Hello everyone,
I seem to have phases, one minute I update a blog a few times in a week and the next I haven't updated it in months! I guess I just update it when I feel I've got something mildly interesting to talk about...
Today has been a very bad day and it's followed a very particular pattern. I'm experiencing what is called 'DOMS', also known as delayed onset muscle soreness. I've not heard the term used much when relating to M.E. but it's a term I use a lot when talking about Personal Training though M.E. 'DOMS' is totally different...
For a start, the muscle pain is much more intense and to an extent, crippling. 'DOMS' experienced after a weights session at the gym doesn't mean you have to alter anything in your routine. You may feel a little sore in places but it's a good soreness and something you can work through.
When I experienced 'DOMS' after a weights session (before I had M.E.), I could still attend university lectures or an 8 hour shift at the pub shortly afterwards with no problem. Today, I've felt almost paralysed. The fatigue and muscle soreness has been so bad that I've not left my bed all day other than eating food.
Wednesday, my car wouldn't start which was very unfortunate. It's a mobility aid for me, I can't walk very far at all so this is the 3rd day I've been housebound now. I've been walking more without mobility aids but the after effects haven't gone away. There is still stiffness, pain and fatigue after any amount of walking. Anyway, my neighbour brought her car over on Thursday morning so I could use my jump leads and hopefully get the car going. The only problem was that for it to be possible, I had to turn my car around completely to get it in the right position. I knew I was doing far too much but there was no way round it, my mum wasn't strong enough to move the car and I could run off adrenaline for a short time. It took well over an hour and I could hardly walk afterwards.
I knew it was a silly thing to do and I did very little on Thursday, I still didn't feel 'terrible' but I wasn't well enough to be doing any jobs around the house, I took it very easy. Today however is a completely different story. I had a good 8 hours sleep and woke up with tingling pains all over, I've felt like this all day even after taking pain relief (don't think they've ever really had an effect) and even typing this is hurting the joints and muscles in my arms.
I've not been able to write any more on my new book and it's definitely going to be the new year that it'll be published. I want to make extra effort on this book as my grammar has been criticized a little in my last book and deservedly so. It's the content that matters after all though... my writing may seem disjointed but then so is my mind so it's a true reflection!
Anyway, I have to endure a 40 minute bus journey tomorrow to go and get my car, then it's a 20 minute drive home. Not good. My great great aunty is also in and out of hospital and I will be visiting her on Sunday after the church carol service. The overloaded schedule can't be helped but this is all a prime example of why I struggle at Christmas. Too much to do when you're limited.
Happy Christmas and bring on the New Year! I think...
Barry x
Friday, 19 December 2014
Saturday, 13 December 2014
New Year, Big Plans!
Hello everyone, I hope you're all having a fabulous weekend so far...
The past few months have been pretty up and down for me but I'm going to focus on the ups...
What am I doing at the moment?
Well I've been writing my 2nd book, it's been a lot more difficult than my 1st book. There's more content and my M.E. symptoms have fluctuated a fair bit since I started writing. However, there's not too much more to do on it. I'm going to have it done hopefully before Christmas but the I will be promoting it more in the New Year. This has been my main focus. I've also been practicing the singing when I can, it must seem forever but these things take time. I've also been pretty tied up with my little ratties. I adopted Gracie, Mags and Pumpkin around a month ago and within days I discovered tumours on all 3 of them. They've been operated on now but they've pulled the stitches out of their wounds. Gracie had staples and they came out too leaving a gaping hole in her tummy, she's required extra attention as 2-3 times a day I have to bathe her wound, put gel in it and give her antibiotics. I guess it's good preparation for when I have a kid of my own, I'm talking more about the caring and not the bathing wounds...
What are next years plans for me?
Well this part of the post is the focal point. The most important point. I'm going to briefly summarise this year and then see how next year can be a better one.
Positives gained from this year:
I'm calling these targets as I don't like the word resolutions. I've never known anyone who sticks to them! These targets I've set I see as doable and I really feel that 2015 is the year big changes will occur.
Exercise - this has been difficult this year but I'm finding what's working for me. I'm finding very gradually I can do more than I could a few months back though still a long way from the "average" person. I've worked the legs which I couldn't have done just months ago even if the weights are light.
I may sign up to a gym and see how it goes. Getting it done in the morning, getting past that "feel like I've been hit by a bus" feeling in the morning and strengthening my body. It may not work but I feel I'm at a point where I can give it a go. I've also decided I'm going to lose weight, get rid of the excess fat and build the weight back up gradually.
Study - this has been difficult to do during the past year but I'm determined that it needs to be done in order to progress with the things I want to do. I'm currently enrolled on 2 courses. A theology course, the aim is not to put back the deadline like I've been continually doing and dedicating certain times of day to do this. The same goes for the nutrition course I'm signed up to.
Personal Training - those who know me will know that this is something I'm qualified in. I also have a degree in business and management and feel the 2 combined can be a real bonus for me. I purchased a web name a year ago and have never done anything with it. This year, I am determined to actually get the website underway and gradually building it up.
Music - Singing is something I've stuck to and I aim to keep on doing it. I've been lacking with piano practice however and this will change next year. I'm working towards writing my own material which won't be possible if I don't keep practicing the 2 so this is a big target for me.
Writing - Well this is secondary to everything above. I've never considered myself an author yet will have 2 books out by the end of the year. It's been great to get my thoughts out onto paper and help raise awareness for different causes. Blogging also comes into this category, I aim to keep my 7 blogs updated even if each blog has 1 update per week. It's doable with a little organising.
Modelling - again, this is secondary as I can't do this without getting back into shape! When I previously modelled, it was a confidence boost and I met some great people whilst making some friends. It's something I'd like to continue doing which can help with my other targets like website promotion etc.
Fresh air - I say this because I've certainly lacked it this year. I've felt at times I've been turning into a hermit which of course I don't want to happen. I always feel better after I've made a trip out of the house so it's a doable aim which will be beneficial for me.
Conclusion:
I always like a conclusion, I feel I've ended something well if there's a conclusion!
You may look at the above and think that this is not possible for someone with M.E. but this is the year I push myself. I may have setbacks but you don't know until you try. I've had 2 years experience of being cautious and listening to my bodies needs, I know when to stop and when to push myself. It's taken time but I've found roughly the right balance.
This time next year I want to view this blog and see the progress I've made. I never break promises and progress WILL be made.
Post any thought underneath, thank for reading!
Barry x
The past few months have been pretty up and down for me but I'm going to focus on the ups...
- My mobility has improved a lot over the past few months, my walking stick isn't being used as much though I've only been keeping to very short distances. Any more than a few minutes walking and my legs start to stiffen and ache quite rapidly.
- Overall, the mid-day naps aren't occurring as much. Since Winter has arrived, it's been very difficult to keep that up as the colder weather is having a great effect on me fatigue and pain wise.
- I've managed to stick to routines more. Having Asperger's means that routines are a must. This includes things like meals, cleaning, hobbies and anything else that needs doing.
What am I doing at the moment?
Well I've been writing my 2nd book, it's been a lot more difficult than my 1st book. There's more content and my M.E. symptoms have fluctuated a fair bit since I started writing. However, there's not too much more to do on it. I'm going to have it done hopefully before Christmas but the I will be promoting it more in the New Year. This has been my main focus. I've also been practicing the singing when I can, it must seem forever but these things take time. I've also been pretty tied up with my little ratties. I adopted Gracie, Mags and Pumpkin around a month ago and within days I discovered tumours on all 3 of them. They've been operated on now but they've pulled the stitches out of their wounds. Gracie had staples and they came out too leaving a gaping hole in her tummy, she's required extra attention as 2-3 times a day I have to bathe her wound, put gel in it and give her antibiotics. I guess it's good preparation for when I have a kid of my own, I'm talking more about the caring and not the bathing wounds...
What are next years plans for me?
Well this part of the post is the focal point. The most important point. I'm going to briefly summarise this year and then see how next year can be a better one.
Positives gained from this year:
- It's given me more time to adjust to my bodies needs like how to pace and how far I can push myself without receiving too much payback.
- I've become more independent and found it easier coping with others lack of understanding towards the condition.
- I wrote my 1st book which I would never have dreamed of just month ago.
- I've had a year practicing singing and made big improvements thought still a long way to go.
- It's become more clear in my mind what direction I want to go.
I'm calling these targets as I don't like the word resolutions. I've never known anyone who sticks to them! These targets I've set I see as doable and I really feel that 2015 is the year big changes will occur.
Exercise - this has been difficult this year but I'm finding what's working for me. I'm finding very gradually I can do more than I could a few months back though still a long way from the "average" person. I've worked the legs which I couldn't have done just months ago even if the weights are light.
I may sign up to a gym and see how it goes. Getting it done in the morning, getting past that "feel like I've been hit by a bus" feeling in the morning and strengthening my body. It may not work but I feel I'm at a point where I can give it a go. I've also decided I'm going to lose weight, get rid of the excess fat and build the weight back up gradually.
Study - this has been difficult to do during the past year but I'm determined that it needs to be done in order to progress with the things I want to do. I'm currently enrolled on 2 courses. A theology course, the aim is not to put back the deadline like I've been continually doing and dedicating certain times of day to do this. The same goes for the nutrition course I'm signed up to.
Personal Training - those who know me will know that this is something I'm qualified in. I also have a degree in business and management and feel the 2 combined can be a real bonus for me. I purchased a web name a year ago and have never done anything with it. This year, I am determined to actually get the website underway and gradually building it up.
Music - Singing is something I've stuck to and I aim to keep on doing it. I've been lacking with piano practice however and this will change next year. I'm working towards writing my own material which won't be possible if I don't keep practicing the 2 so this is a big target for me.
Writing - Well this is secondary to everything above. I've never considered myself an author yet will have 2 books out by the end of the year. It's been great to get my thoughts out onto paper and help raise awareness for different causes. Blogging also comes into this category, I aim to keep my 7 blogs updated even if each blog has 1 update per week. It's doable with a little organising.
Modelling - again, this is secondary as I can't do this without getting back into shape! When I previously modelled, it was a confidence boost and I met some great people whilst making some friends. It's something I'd like to continue doing which can help with my other targets like website promotion etc.
Fresh air - I say this because I've certainly lacked it this year. I've felt at times I've been turning into a hermit which of course I don't want to happen. I always feel better after I've made a trip out of the house so it's a doable aim which will be beneficial for me.
Conclusion:
I always like a conclusion, I feel I've ended something well if there's a conclusion!
You may look at the above and think that this is not possible for someone with M.E. but this is the year I push myself. I may have setbacks but you don't know until you try. I've had 2 years experience of being cautious and listening to my bodies needs, I know when to stop and when to push myself. It's taken time but I've found roughly the right balance.
This time next year I want to view this blog and see the progress I've made. I never break promises and progress WILL be made.
Post any thought underneath, thank for reading!
Barry x
Thursday, 27 November 2014
Donation update + I need help - details inside!
Hello everyone, thank you all for the incredible response to my latest offer on my book "A New ME".
I apologise that this post is late but here it is copied and pasted from my facebook page...
Hello, most of you will know I've been running an offer for kindle users for the past 5 days (Sunday - Thursday). It was free for those 5 days and for every copy downloaded I would personally donate 10p to "Invest in ME". The offer has now ended and 387 copies were sold taking the overall sales number to 517. This means that £38.70 was raised, this number was then rounded up to the next 0 (like I always do) taking the amount up to £40. Then £3 was added to this amount as that is the amount raised for the months September and October when just 10% went to charity. Still with me? We're at £43... this was then rounded up to £50 so that is the amount donated plus a £12.50 gift aid taking the amount raised to...
£62.50!!!
My last offer in August/September had raised £87.50 altogether so now my book has raised an overall amount of...
£150 for the charity...
Thanks everyone!
Secondly, I'm sure a lot of you know by now that I'm writing a new book called "Life is Complicated: My journey with Asperger Syndrome". It's coming along well but there's 1 chapter I'd like a bit of help with... you can be that help!
I'm doing a chapter in a Q+A format and I'd liked to be asked questions from a variety of people. There's a few questions I've had from "Autism Mums" and I'd like a few questions from you guys who don't necessarily know much about the condition. I will answer these questions in detail in my book... your questions can be as short or long as you like and don't worry about it being personal or offensive. I'm here to answer all sorts of questions.
Write your questions down in the comments box below, it would be much appreciated...
P.S. What do you think of this new cover? It needs some amendments like the title colour but I'm looking for opinions?
Thanks everyone xxx
I apologise that this post is late but here it is copied and pasted from my facebook page...
Hello, most of you will know I've been running an offer for kindle users for the past 5 days (Sunday - Thursday). It was free for those 5 days and for every copy downloaded I would personally donate 10p to "Invest in ME". The offer has now ended and 387 copies were sold taking the overall sales number to 517. This means that £38.70 was raised, this number was then rounded up to the next 0 (like I always do) taking the amount up to £40. Then £3 was added to this amount as that is the amount raised for the months September and October when just 10% went to charity. Still with me? We're at £43... this was then rounded up to £50 so that is the amount donated plus a £12.50 gift aid taking the amount raised to...
£62.50!!!
My last offer in August/September had raised £87.50 altogether so now my book has raised an overall amount of...
£150 for the charity...
Thanks everyone!
Secondly, I'm sure a lot of you know by now that I'm writing a new book called "Life is Complicated: My journey with Asperger Syndrome". It's coming along well but there's 1 chapter I'd like a bit of help with... you can be that help!
I'm doing a chapter in a Q+A format and I'd liked to be asked questions from a variety of people. There's a few questions I've had from "Autism Mums" and I'd like a few questions from you guys who don't necessarily know much about the condition. I will answer these questions in detail in my book... your questions can be as short or long as you like and don't worry about it being personal or offensive. I'm here to answer all sorts of questions.
Write your questions down in the comments box below, it would be much appreciated...
P.S. What do you think of this new cover? It needs some amendments like the title colour but I'm looking for opinions?
Thanks everyone xxx
Saturday, 8 November 2014
A very SPECIAL OFFER for KINDLE users helping to raise Awareness for M.E.
Hello everyone... if you're a Kindle user then I have a very special offer for you which starts TOMORROW (Sunday 9th November) and ends on Thursday (13th November).
So what's the offer?
Well my first published book "A New ME" will be available in that time period for FREE!!! Not only that, but for every copy sold during that time period, I will personally donate 10p per purchase. The charity is the same as always, "Invest in ME".
What's the catch? There honestly is no catch although it would be much appreciated if you could leave the book a review on Amazon and even Goodreads if you use that.
Why am I doing this? Well it's not due to lack of sales, it's selling fairly steady at the moment. I'm just feeling kind... also, the more copies that are sold means the higher ranking the book will be on amazon. This is great for ME Awareness so even if you're not really interested in reading the book, purchase it for FREE.
Here are the links:
UK version: http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1415454713
US version: http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1_twi_2?ie=UTF8&qid=1415454823&sr=8-1&keywords=a+new+me
Lastly, the book is available in ALL COUNTRIES and don't forget that the offer starts TOMORROW!!!
If you could share this post around then that would be great, I'll also be tweeting a lot about it on twitter if you want to follow me @bazmufc8491 and @BJEadvertise
Thanks for all your support!!! XXX
So what's the offer?
Well my first published book "A New ME" will be available in that time period for FREE!!! Not only that, but for every copy sold during that time period, I will personally donate 10p per purchase. The charity is the same as always, "Invest in ME".
What's the catch? There honestly is no catch although it would be much appreciated if you could leave the book a review on Amazon and even Goodreads if you use that.
Why am I doing this? Well it's not due to lack of sales, it's selling fairly steady at the moment. I'm just feeling kind... also, the more copies that are sold means the higher ranking the book will be on amazon. This is great for ME Awareness so even if you're not really interested in reading the book, purchase it for FREE.
Here are the links:
UK version: http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1415454713
US version: http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1_twi_2?ie=UTF8&qid=1415454823&sr=8-1&keywords=a+new+me
Lastly, the book is available in ALL COUNTRIES and don't forget that the offer starts TOMORROW!!!
If you could share this post around then that would be great, I'll also be tweeting a lot about it on twitter if you want to follow me @bazmufc8491 and @BJEadvertise
Thanks for all your support!!! XXX
Saturday, 20 September 2014
Barry's M.E. Diary - Week 1 plus latest WRAG update!
Hello everyone!
Hope you're all having a fabulous weekend so far...
This post is to tell you about a new series I am doing on youtube... a series that I hope will raise more awareness for this chronic illness...
You can see what it's called in the title of this post! Pretty self explanatory but I'll give you a run down anyway. The series will be updated weekly keeping you all up to date on how my weeks are going M.E. wise including activities I've done and what symptoms I've bee experiencing. Through my new book, I have a growing following on twitter so I see this as a perfect opportunity to get word out there.
Each week I will share the link in this blog. But before I send you the link, I want to update you on what happened at WRAG (Work Related Assessment Group) yesterday. P.S. If my writing isn't as fluent as usual, it's because Lucy rat kept sitting on the keyboard. They've returned to their cage now!
So... WRAG... well, it didn't happen! My appointment was at 9:45am and as soon as I got there I found a piece of paper stuck to the door. Apparently the office was closed! A couple turned up at the same time so I had to take charge of the situation... I led the way to where the piece of paper told us to go which was a few yards away in a different building. We got there and the lady in the office didn't have a clue what I was talking about despite being sent to this place. Anyway, we all returned to the original place where our appointments where meant to be. There was a mobile number which I rung as the couple I was with didn't speak very good English. I hate phone calls but sometimes it's got to be done!!! By this point, a group of around 5 people gathered round waiting for me to come off the phone... talk about pressure! I got the lady who I was meant to be seeing, she said they were in the other place but couldn't carry on with appointments... the keyhole to the office had been filled up with cement so no-one could get in! That meant the workers at a4e had no access to office phones or files. At first I was annoyed but then about a little thought, I found it quite amusing and as bad as this sounds I thought, good for whoever did it! Ha ha... Anyway, that was my amusement for Friday morning! Here's the link to the video:
https://www.youtube.com/watch?v=j4-by6Ev-Bc&list=UUCrsPBrO__GVcD3rm8nomjw
Hope you're all having a fabulous weekend so far...
This post is to tell you about a new series I am doing on youtube... a series that I hope will raise more awareness for this chronic illness...
You can see what it's called in the title of this post! Pretty self explanatory but I'll give you a run down anyway. The series will be updated weekly keeping you all up to date on how my weeks are going M.E. wise including activities I've done and what symptoms I've bee experiencing. Through my new book, I have a growing following on twitter so I see this as a perfect opportunity to get word out there.
Each week I will share the link in this blog. But before I send you the link, I want to update you on what happened at WRAG (Work Related Assessment Group) yesterday. P.S. If my writing isn't as fluent as usual, it's because Lucy rat kept sitting on the keyboard. They've returned to their cage now!
So... WRAG... well, it didn't happen! My appointment was at 9:45am and as soon as I got there I found a piece of paper stuck to the door. Apparently the office was closed! A couple turned up at the same time so I had to take charge of the situation... I led the way to where the piece of paper told us to go which was a few yards away in a different building. We got there and the lady in the office didn't have a clue what I was talking about despite being sent to this place. Anyway, we all returned to the original place where our appointments where meant to be. There was a mobile number which I rung as the couple I was with didn't speak very good English. I hate phone calls but sometimes it's got to be done!!! By this point, a group of around 5 people gathered round waiting for me to come off the phone... talk about pressure! I got the lady who I was meant to be seeing, she said they were in the other place but couldn't carry on with appointments... the keyhole to the office had been filled up with cement so no-one could get in! That meant the workers at a4e had no access to office phones or files. At first I was annoyed but then about a little thought, I found it quite amusing and as bad as this sounds I thought, good for whoever did it! Ha ha... Anyway, that was my amusement for Friday morning! Here's the link to the video:
Wednesday, 27 August 2014
A New ME - LIMITED OFFER!
Hello all, so here's the offer I was telling you about!
Considering my book hasn't had any real marketing, it's done pretty well so thank you to those who have bought it.
However, I'd like to raise even more awareness and raise more money for "Invest in ME".
Considering my book hasn't had any real marketing, it's done pretty well so thank you to those who have bought it.
However, I'd like to raise even more awareness and raise more money for "Invest in ME".
I've decided that for 7 days, both paperback and kindle copies will be
cheaper. Not only that, but ALL money made from sales during this period
will to go "Invest in ME".
After the 7 days, I will round up the total raised to the nearest "0" and post it on here. I will also screenshot the screen when I make the donation.
I will post again when this offer starts and post around the M.E. groups on here and also on Twitter.
It is available in ALL countries too but here I will post links for the UK & US Amazon:
UK Paperback - £3.94 http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=sr_1_1_bnp_1_pap?ie=UTF8&qid=1409036494&sr=8-1&keywords=a+new+me
UK Kindle - £1.85 http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409036494
US Paperback - $6.55 http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1409037317&sr=8-1
US Kindle - $3.07 http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409037317
Lastly, share this post and tag people who you think would be interested.
Thank you everyone. The 7 days starts now so the offer ends this time next Tuesday (2nd September)!
After the 7 days, I will round up the total raised to the nearest "0" and post it on here. I will also screenshot the screen when I make the donation.
I will post again when this offer starts and post around the M.E. groups on here and also on Twitter.
It is available in ALL countries too but here I will post links for the UK & US Amazon:
UK Paperback - £3.94 http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=sr_1_1_bnp_1_pap?ie=UTF8&qid=1409036494&sr=8-1&keywords=a+new+me
UK Kindle - £1.85 http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409036494
US Paperback - $6.55 http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1409037317&sr=8-1
US Kindle - $3.07 http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-1&qid=1409037317
Lastly, share this post and tag people who you think would be interested.
Thank you everyone. The 7 days starts now so the offer ends this time next Tuesday (2nd September)!
Sunday, 24 August 2014
ALS Ice Bucket Challenge
Hello all, although this isn't M.E. related, I've decided to make this post because it's important to support all illnesses/conditions. It's also very light hearted but raising awareness for a good cause.
I think there should be something similar for M.E. but not necessarily using ice buckets as although I didn't feel it at the time, I now have a banging headache and blurred vision. I'm actually in bed before 10pm with my electric blanket on full!!!
Here's the video:
https://www.youtube.com/watch?v=yTSQfkIp-28&list=UUCrsPBrO__GVcD3rm8nomjw
I think there should be something similar for M.E. but not necessarily using ice buckets as although I didn't feel it at the time, I now have a banging headache and blurred vision. I'm actually in bed before 10pm with my electric blanket on full!!!
Here's the video:
https://www.youtube.com/watch?v=yTSQfkIp-28&list=UUCrsPBrO__GVcD3rm8nomjw
Wednesday, 20 August 2014
M.E. - Wise thoughts with a Chronic Illness.
Ok... I'm in the blogging mood!
Today, I will be talking about occupying the mind. This helps a lot when suffering with a Chronic Illness but the phrase can also contradict itself when relating it to a Chronic Illness.
When every limb is screaming out with pain and every single muscle is just too fatigued to keep up with what your brain is telling you to do, it can be incredibly hard not to fall into some sort of depression.
I've suffered with depression in the past to the point where I wanted to end my life, luckily I was unsuccessful in my attempt but I learned a lot from it. It took me a good few years after that to actually learn from it however.
At just 23 years old, I feel very wise and mature for my age, probably why the majority of my friends are a lot older than me. I don't feel my age. Sure, I can have a good laugh and share things in common with others my age, but I feel I'm more on a wave length with older people. That's why relationship wise I've always been more interested in dating someone up to 20 years older than myself as opposed to someone my own age. Age is just a number at the end of the day. With all these illnesses striking us unexpectedly, surely age is the last thing we should be worrying about?
Anyway, I was saying I have learned a lot from my experience with depression and the link with occupying the mind. There was always a pattern that when my mind was occupied, my depression decreased ever so slightly. Finding new hobbies, even speaking to the right people helped incredibly well. I feel aiming towards goals are vital too whether long-term or short-term.
With M.E., it can be very hard to occupy our minds when we are so limited and so fatigued/energy-less. In myself I have felt better the past few weeks but health wise I've really taken a knock for it because I haven't given myself time to catch up with myself and dwell. When we dwell, we tend to attract negative thoughts... thoughts about the future/personal relationships/health etc etc. I've been hurt a lot in the past by selfish people, whether they be friends/professionals or partners. Dwelling on these bad experiences has previously been my down side. I've been led on, treated like dirt, not taken seriously and at 23 years old, I'm at a stage where I've started to think about myself more for my own benefit. These bullies made me into an incredibly shy/insecure person and I've gradually worked my way up to contentment so why on earth would I let negative influences affect my life?
God's opinion is the only one that matters, he has big plans for me and already I am starting to see some of them unravel before my very eyes. Many have said I cope so well with the illness which is a huge compliment, but that's how God has worked. I read bits of scripture and pray throughout the day that keep me ticking. I'm not "brainwashed" or "unrealistic" by any means, I just have a firm belief which in effect gives me reason to keep going... I know there are better times ahead.
Relating back to short-term and long-term goals, I have lots. M.E. has helped me to discover things I would never have discovered before... what I mean by that is if I didn't have M.E., I would never have explored things that I've found... I'm accepting the illness but I'm working around it. I know people who give in to the illness and I know people that won't accept it, neither ends positively. You need to find that balance which luckily I feel I have. Sure, I'm positive about a full recovery but I'm not waiting around until it happens. For the time being, I'm working around it. My goals... well, I've discovered a love for music... singing! I had never sung anything before I had M.E. and to be honest, I find it hard to keep up as it requires more energy than you think. But it's there for me to keep going back to and I have a teacher to help me work towards my grades. The same goes for playing the keyboard though it hasn't been touched much recently to be completely honest. Theology, I enrolled on an online theology course a year ago, I've only completed 1 module but it's gradual progress, again... it's something I can dip in and out of. There's also the website name I purchased for my personal training plans, it's a gradual process... I'm continually experimenting with exercise too which is going fairly well.
The short of this post is to not let others control your mind! You are in control of what you do and think. Occupy your mind if negative thoughts start to drift in and you'll reap the benefits. Be wise! :)
And... to finish off... here's my lovely boy, Smokey who kept me company after my hospital visit yesterday!
Hope you're all enjoying yourselves x
Today, I will be talking about occupying the mind. This helps a lot when suffering with a Chronic Illness but the phrase can also contradict itself when relating it to a Chronic Illness.
When every limb is screaming out with pain and every single muscle is just too fatigued to keep up with what your brain is telling you to do, it can be incredibly hard not to fall into some sort of depression.
I've suffered with depression in the past to the point where I wanted to end my life, luckily I was unsuccessful in my attempt but I learned a lot from it. It took me a good few years after that to actually learn from it however.
At just 23 years old, I feel very wise and mature for my age, probably why the majority of my friends are a lot older than me. I don't feel my age. Sure, I can have a good laugh and share things in common with others my age, but I feel I'm more on a wave length with older people. That's why relationship wise I've always been more interested in dating someone up to 20 years older than myself as opposed to someone my own age. Age is just a number at the end of the day. With all these illnesses striking us unexpectedly, surely age is the last thing we should be worrying about?
Anyway, I was saying I have learned a lot from my experience with depression and the link with occupying the mind. There was always a pattern that when my mind was occupied, my depression decreased ever so slightly. Finding new hobbies, even speaking to the right people helped incredibly well. I feel aiming towards goals are vital too whether long-term or short-term.
With M.E., it can be very hard to occupy our minds when we are so limited and so fatigued/energy-less. In myself I have felt better the past few weeks but health wise I've really taken a knock for it because I haven't given myself time to catch up with myself and dwell. When we dwell, we tend to attract negative thoughts... thoughts about the future/personal relationships/health etc etc. I've been hurt a lot in the past by selfish people, whether they be friends/professionals or partners. Dwelling on these bad experiences has previously been my down side. I've been led on, treated like dirt, not taken seriously and at 23 years old, I'm at a stage where I've started to think about myself more for my own benefit. These bullies made me into an incredibly shy/insecure person and I've gradually worked my way up to contentment so why on earth would I let negative influences affect my life?
God's opinion is the only one that matters, he has big plans for me and already I am starting to see some of them unravel before my very eyes. Many have said I cope so well with the illness which is a huge compliment, but that's how God has worked. I read bits of scripture and pray throughout the day that keep me ticking. I'm not "brainwashed" or "unrealistic" by any means, I just have a firm belief which in effect gives me reason to keep going... I know there are better times ahead.
Relating back to short-term and long-term goals, I have lots. M.E. has helped me to discover things I would never have discovered before... what I mean by that is if I didn't have M.E., I would never have explored things that I've found... I'm accepting the illness but I'm working around it. I know people who give in to the illness and I know people that won't accept it, neither ends positively. You need to find that balance which luckily I feel I have. Sure, I'm positive about a full recovery but I'm not waiting around until it happens. For the time being, I'm working around it. My goals... well, I've discovered a love for music... singing! I had never sung anything before I had M.E. and to be honest, I find it hard to keep up as it requires more energy than you think. But it's there for me to keep going back to and I have a teacher to help me work towards my grades. The same goes for playing the keyboard though it hasn't been touched much recently to be completely honest. Theology, I enrolled on an online theology course a year ago, I've only completed 1 module but it's gradual progress, again... it's something I can dip in and out of. There's also the website name I purchased for my personal training plans, it's a gradual process... I'm continually experimenting with exercise too which is going fairly well.
The short of this post is to not let others control your mind! You are in control of what you do and think. Occupy your mind if negative thoughts start to drift in and you'll reap the benefits. Be wise! :)
And... to finish off... here's my lovely boy, Smokey who kept me company after my hospital visit yesterday!
Hope you're all enjoying yourselves x
Monday, 18 August 2014
M.E. - A Work in Progress!
Hello everyone... I'm back... updating my blogs!
I thought I'd keep you all updated with what's been going on...
A few weeks ago I had my worst time ever with M.E. - it was a weekend, mainly Saturday and everywhere was so painful, I could barely move the whole day... couldn't physically go beyond slow motion, I must've lay down at least 20 hours that day... I'd been fairly busy and could see a definitive pattern. It's moments like these when you know it's not in your mind and it's moments like these that reaffirms you that there is something definitely wrong. It's times like these when you wish your family/friends/doctors etc could see how badly affected you really are...
Anyway, I had a pretty good week a couple of weeks later, kept my mind occupied. I try to refrain from falling into the trap of doing absolutely nothing (although not always possible) as my mind wanders. That's when negative thoughts kick in. Thinking about things like your current situation, current relationships and what the future holds... others thoughts!
Spending more time away from the computer definitely helps, I like to go out for coffees as it caters for a change of scenery... somewhere I can park outside without having to walk very far at all. My leg pains now go worse even after a few yards... I had a day out recently and didn't do overly much but was out for a fair bit... I was walking like a snail by the end of it... I couldn't physically move any quicker, my legs were giving up on me...
I'm very pleased to have published my book of course, that was a great achievement for me. I've had very good support and very nice comments about it too. Also, I've made new friends though I'm finding keeping up with messages a little difficult! I wish I could talk to everyone but it's not always possible... especially when you have so little energy.
My next project... a project that will take months and months is my personal training website. I've mentioned it before but gradually I'm collecting bits of information and coming up with new ideas for it. I'm also experimenting with very little exercise and a good diet, I've made decent progress so far considering how little I'm actually doing but again, it's a long project and my goal will probably take at least a year to reach. My body fat has rocketed up since I've had M.E. and I've not got the same muscle mass I once had... I'm a work in progress!
I've purchased a laptop, I'm going to store all my documents and information for the website on there. I'm going to store things like my book manuscript so it's for business really. I can also start taking it to coffee shops which will be good for me.
Singing... it's still a work in progress and I'm improving gradually, obviously I can't practice an awful lot but I'm working towards my grade 2 at the end of the year.
Lastly... WRAG (work-related assessment group)... urgh... they're trying to force me into voluntary work... firstly they wanted me to do a half hour train ride (plus 10 minute walk) then a full day of "motivational course"... and of course the travel back and also to and from the station... and also they wanted me to do this twice a week!!! They accepted it was too much for me in the end but the very thought is exhausting... they're now trying to push me to do 1 day a week fixing clocks for 4 hours! I can't even stay up that long and on the rare occasion I do, the payback is pretty intense. They have no idea. I've had letters from the hospital where I'm having therapy and WRAG just won't accept them... they're great letters explaining thoroughly my limitations but still they don't listen!
Anyway, that's what I've been up to!
Thanks for reading...
Keep on fighting!
Barry x
I thought I'd keep you all updated with what's been going on...
A few weeks ago I had my worst time ever with M.E. - it was a weekend, mainly Saturday and everywhere was so painful, I could barely move the whole day... couldn't physically go beyond slow motion, I must've lay down at least 20 hours that day... I'd been fairly busy and could see a definitive pattern. It's moments like these when you know it's not in your mind and it's moments like these that reaffirms you that there is something definitely wrong. It's times like these when you wish your family/friends/doctors etc could see how badly affected you really are...
Anyway, I had a pretty good week a couple of weeks later, kept my mind occupied. I try to refrain from falling into the trap of doing absolutely nothing (although not always possible) as my mind wanders. That's when negative thoughts kick in. Thinking about things like your current situation, current relationships and what the future holds... others thoughts!
Spending more time away from the computer definitely helps, I like to go out for coffees as it caters for a change of scenery... somewhere I can park outside without having to walk very far at all. My leg pains now go worse even after a few yards... I had a day out recently and didn't do overly much but was out for a fair bit... I was walking like a snail by the end of it... I couldn't physically move any quicker, my legs were giving up on me...
I'm very pleased to have published my book of course, that was a great achievement for me. I've had very good support and very nice comments about it too. Also, I've made new friends though I'm finding keeping up with messages a little difficult! I wish I could talk to everyone but it's not always possible... especially when you have so little energy.
My next project... a project that will take months and months is my personal training website. I've mentioned it before but gradually I'm collecting bits of information and coming up with new ideas for it. I'm also experimenting with very little exercise and a good diet, I've made decent progress so far considering how little I'm actually doing but again, it's a long project and my goal will probably take at least a year to reach. My body fat has rocketed up since I've had M.E. and I've not got the same muscle mass I once had... I'm a work in progress!
I've purchased a laptop, I'm going to store all my documents and information for the website on there. I'm going to store things like my book manuscript so it's for business really. I can also start taking it to coffee shops which will be good for me.
Singing... it's still a work in progress and I'm improving gradually, obviously I can't practice an awful lot but I'm working towards my grade 2 at the end of the year.
Lastly... WRAG (work-related assessment group)... urgh... they're trying to force me into voluntary work... firstly they wanted me to do a half hour train ride (plus 10 minute walk) then a full day of "motivational course"... and of course the travel back and also to and from the station... and also they wanted me to do this twice a week!!! They accepted it was too much for me in the end but the very thought is exhausting... they're now trying to push me to do 1 day a week fixing clocks for 4 hours! I can't even stay up that long and on the rare occasion I do, the payback is pretty intense. They have no idea. I've had letters from the hospital where I'm having therapy and WRAG just won't accept them... they're great letters explaining thoroughly my limitations but still they don't listen!
Anyway, that's what I've been up to!
Thanks for reading...
Keep on fighting!
Barry x
Saturday, 21 June 2014
A New ME by Barry John Evans available in paperback and kindle
Hello everyone, I thought you may be interested to hear that I have had a book published! It's about my journey so far with M.E. whilst I also talk about my struggles with autism and depression too. If you'd like to know a bit more then I've recorded a video which you can watch via this link: https://www.youtube.com/watch?v=eG8bCFpbseE
Also, if you'd like to purchase a copy then you can do so through the following links: http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1 - this is the link for UK readers who would like a paperback. It's currently at £5.89
http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me - this is the link for UK readers who prefer to read a kindle. It's currently at £3.06
http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 - this is a link for everyone who lives in the US and would like a paperback. Currently at $8.71
http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040 - Finally, this is a link for everyone in the US who would like a copy on kindle. It's at $5.19.
It's also available in ALL countries and 10% of profits go to the charity "Invest in ME".
Hope you all enjoy!
Barry x
Tuesday, 6 May 2014
My post for M.E. Awareness. Help spread the word!
Hello everyone!
This is M.E. Awareness month and next week is M.E. Awareness day (12th May).
I've been very kindly asked to write a post for M.E. Awareness so here goes...
It's a lovely sunny day today and here I am with my thick hoodie accompanied by a pair of fingerless gloves. Why is that? Body temperature is just one very small symptom of this illness!
I'm going to explain what M.E. is and how it affects me.
What is M.E.?
Taken from the patient.co.uk website...
Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known.
Doesn't sound great does it?! So on what scale does M.E. affect people? There isn't a specific answer so I thought it would be best to take you through the 3 different forms of M.E. (Mild, Moderate and Severe).
So you get a clearer insight into how limited sufferers with the different forms of M.E. are, I've taken the following information from the patient website...
Mild cases - you can care for yourself and can do light domestic tasks, but with difficulty. You are still likely to be able to do a job, but may often take days off work. In order to remain in work you are likely to have stopped most leisure and social activities. Weekends or other days off from work are used to rest in order to cope.
Moderate cases - you have reduced mobility and are restricted in most activities of daily living. The level of ability and severity of symptoms often varies from time to time (peaks and troughs). You are likely to have stopped work and require rest periods. Sleep at night tends to be poor and disturbed.
Severe cases - you are able to carry out only minimal daily tasks such as face washing and cleaning teeth. You are likely to have severe difficulties with some mental processes such as concentrating. You may be wheelchair-dependent for mobility and may be unable to leave your home except on rare occasions, and usually have severe prolonged after-effects from effort. You may spend most of your time in bed. You are often unable to tolerate any noise, and are generally very sensitive to bright light.
Hopefully now you will have a clear view on what M.E. is! So how does this illness affect me personally? Well I've compiled a video which I filmed last week as I feel that seeing how it affects me is the best way to get the message across and raise awareness.
Before I share the link with you, I'd like to share with you a little bit about my history!
I was diagnosed with M.E. on the 10th January 2013 aged 21. Just months prior to this, I had graduated from University and then went on to a Personal Training academy which I had only finished a couple a months before my diagnosis. It was summer 2012 that I 1st started to wonder if I had M.E. (I had never heard of the illness before then). Before then I thought it was just me and that it was partly down to my Aspergers which I was diagnosed with as a child. I talked to a friend who had M.E. and a lot of what they were saying I could really relate with. I then went to see my doctor who referred me to a specialist (I was diagnosed the day I saw the specialist). I had only been Personal Training for a matter of weeks before I had to give it up, at this time I was also working a few nights a week as a barman and was very into my sports/ weightlifting.
Here's the link to my video: https://www.youtube.com/watch?v=TIvc_1SCKhI&list=UUCrsPBrO__GVcD3rm8nomjw
Help spread the word!
This is M.E. Awareness month and next week is M.E. Awareness day (12th May).
I've been very kindly asked to write a post for M.E. Awareness so here goes...
It's a lovely sunny day today and here I am with my thick hoodie accompanied by a pair of fingerless gloves. Why is that? Body temperature is just one very small symptom of this illness!
I'm going to explain what M.E. is and how it affects me.
What is M.E.?
Taken from the patient.co.uk website...
Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known.
Doesn't sound great does it?! So on what scale does M.E. affect people? There isn't a specific answer so I thought it would be best to take you through the 3 different forms of M.E. (Mild, Moderate and Severe).
So you get a clearer insight into how limited sufferers with the different forms of M.E. are, I've taken the following information from the patient website...
Mild cases - you can care for yourself and can do light domestic tasks, but with difficulty. You are still likely to be able to do a job, but may often take days off work. In order to remain in work you are likely to have stopped most leisure and social activities. Weekends or other days off from work are used to rest in order to cope.
Moderate cases - you have reduced mobility and are restricted in most activities of daily living. The level of ability and severity of symptoms often varies from time to time (peaks and troughs). You are likely to have stopped work and require rest periods. Sleep at night tends to be poor and disturbed.
Severe cases - you are able to carry out only minimal daily tasks such as face washing and cleaning teeth. You are likely to have severe difficulties with some mental processes such as concentrating. You may be wheelchair-dependent for mobility and may be unable to leave your home except on rare occasions, and usually have severe prolonged after-effects from effort. You may spend most of your time in bed. You are often unable to tolerate any noise, and are generally very sensitive to bright light.
Hopefully now you will have a clear view on what M.E. is! So how does this illness affect me personally? Well I've compiled a video which I filmed last week as I feel that seeing how it affects me is the best way to get the message across and raise awareness.
Before I share the link with you, I'd like to share with you a little bit about my history!
I was diagnosed with M.E. on the 10th January 2013 aged 21. Just months prior to this, I had graduated from University and then went on to a Personal Training academy which I had only finished a couple a months before my diagnosis. It was summer 2012 that I 1st started to wonder if I had M.E. (I had never heard of the illness before then). Before then I thought it was just me and that it was partly down to my Aspergers which I was diagnosed with as a child. I talked to a friend who had M.E. and a lot of what they were saying I could really relate with. I then went to see my doctor who referred me to a specialist (I was diagnosed the day I saw the specialist). I had only been Personal Training for a matter of weeks before I had to give it up, at this time I was also working a few nights a week as a barman and was very into my sports/ weightlifting.
Here's the link to my video: https://www.youtube.com/watch?v=TIvc_1SCKhI&list=UUCrsPBrO__GVcD3rm8nomjw
Help spread the word!
Thursday, 1 May 2014
M.E. Awareness - Spread the word!
Hello everyone! I would very much appreciate if you could view and share this video to help raise awareness for this terrible illness! Thank you! :)
https://www.youtube.com/watch?v=TIvc_1SCKhI
P.S. Spread the word!!!
https://www.youtube.com/watch?v=TIvc_1SCKhI
P.S. Spread the word!!!
Monday, 14 April 2014
M.E. - WRAG group session 2
Hello! So first of all, I apologize for not updating my blog in so long! It's not been a great couple of months to be honest. For example, over the past weekend, I spent around 30/48 hours lying down on my bed! This week, I'm really trying to push myself (not too much) so be slightly more active. It's easier said than done as I'm sure you all know...
It's not a great start to the week, as you can see in the title I had to attend the WRAG group for a 2nd time. If you scroll back a bit, you'll see I posted after the 1st session. Tomorrow I'm at hospital for therapy so it's a very tiring couple of days!
So... WRAG group... well, I went along, waited about 10 minutes, spoke to the person I saw for about 5 minutes and then sat for around 20 minutes whilst they were typing on the computer.
What did we talk about for those 5 minutes bearing in mind it's meant to be an hour long session? (though I'm not complaining!) Well... very little actually. They were asking me what sort of work I wanted to be doing and of course, the answer is the same as it always has been. The thing I'm qualified in called Personal Training! I can't get my head around the next bit... They asked me if I'd heard of a group, something like active for life?! Anyway, it's something you ask your doctor and it's basically going along to see a trainer in a special gym who will personalize a program for you to help you get back to full fitness. ??????!!!!!!!! Not only did I find this insulting but I found it ridiculous. 1st of all, I'm a Personal Trainer! Why on earth would I want to be trained by someone else who is no more qualified than I am?! 2nd of all, working out with moderate M.E... I don't think so... Unless of course I want to make myself worse. I do very little at home and even that is pushing it, never mind a full gym workout!
Not for 1 minute am I blaming the person I saw, she even said that the Job Centre are on their backs asking what they're doing with these people in the WRAG group.
Anyway, the conclusion of our 'meeting' was that I'm going back in 2 weeks to complete my C.V. even though they said the one I gave them was fine, just needed to be adjusted for their purposes!
Also, when I'm at the hospital tomorrow, I need a report from my OT to state what they're doing with me just so when I have my next WRAG group meeting, they know what I can and can't do... in writing as they can't take my word for it...
So... if anyone else has any experiences of WRAG groups then leave a comment!
Thanks for reading...
Barry x
It's not a great start to the week, as you can see in the title I had to attend the WRAG group for a 2nd time. If you scroll back a bit, you'll see I posted after the 1st session. Tomorrow I'm at hospital for therapy so it's a very tiring couple of days!
So... WRAG group... well, I went along, waited about 10 minutes, spoke to the person I saw for about 5 minutes and then sat for around 20 minutes whilst they were typing on the computer.
What did we talk about for those 5 minutes bearing in mind it's meant to be an hour long session? (though I'm not complaining!) Well... very little actually. They were asking me what sort of work I wanted to be doing and of course, the answer is the same as it always has been. The thing I'm qualified in called Personal Training! I can't get my head around the next bit... They asked me if I'd heard of a group, something like active for life?! Anyway, it's something you ask your doctor and it's basically going along to see a trainer in a special gym who will personalize a program for you to help you get back to full fitness. ??????!!!!!!!! Not only did I find this insulting but I found it ridiculous. 1st of all, I'm a Personal Trainer! Why on earth would I want to be trained by someone else who is no more qualified than I am?! 2nd of all, working out with moderate M.E... I don't think so... Unless of course I want to make myself worse. I do very little at home and even that is pushing it, never mind a full gym workout!
Not for 1 minute am I blaming the person I saw, she even said that the Job Centre are on their backs asking what they're doing with these people in the WRAG group.
Anyway, the conclusion of our 'meeting' was that I'm going back in 2 weeks to complete my C.V. even though they said the one I gave them was fine, just needed to be adjusted for their purposes!
Also, when I'm at the hospital tomorrow, I need a report from my OT to state what they're doing with me just so when I have my next WRAG group meeting, they know what I can and can't do... in writing as they can't take my word for it...
So... if anyone else has any experiences of WRAG groups then leave a comment!
Thanks for reading...
Barry x
Friday, 21 February 2014
My Nominations for the First ME CFS FMS Blog Awards (2)
Hello all!
So basically, this is a continuation from yesterdays post. I've just taken some painkillers so I'm hoping my headache will ease a bit whilst I'm doing this.
Yesterday, I explained the rules of the Blog Awards started by Sally. It's a great idea and as I want to try and raise as much awareness as possible, I'm going to share with you 6 others blogs. I shared 4 with you yesterday and I thought I'd take the tally up to 10!
Here goes...
This is Megan with "my chronic life journey".
http://mychroniclifejourney.com/
Megan was diagnosed last April after being rushed to hospital with extreme stomach cramps. A lot of Megan's posts provide useful tips for those suffering with M.E. She has also started up the "Foggy Frog and the Pain Gang Campaign" which you should check out.
Next up is Ali with "All about ME!".
http://beingamummywithme.blogspot.co.uk/
Ali suffers with severe M.E. and gives us a great insight into what it's like to be a mum whilst suffering with the illness. From the preparations through to the pregnancy, this is a must read for any mums to be.
Next up is Cort Johnson with his blog on the "Health Rising" website.
http://www.cortjohnson.org/blog/author/Cortttt/
Cort writes many articles based on facts and reports. It's a must read for those who are into statistics and for those looking to help find a cure to this illness. The article "What stops you from trying to get better? An ME/CFS and Fibromyalgia community report" may be of particular interest to you. http://www.cortjohnson.org/blog/2014/02/10/stops-trying-get-better-me-cfs-fibromyalgia-community-report/
Next up is Cari with her blog on the "Heal Click" website.
http://blog.healclick.com/author/cari
Cari's blog is very much like Cort's blog as she writes many articles based on facts and reports. "Sensory Overload & Lack of Inhibition in Fibromyalgia & MECFS may interest you in particular: http://blog.healclick.com/fibromyalgia/sensory-overload-in-fibromyalgia-mecfs
Next up is Leigh with "a Path Through the Valley".
http://apaththroughthevalley.wordpress.com/
Leigh has suffered with M.E. since the age of 15. In this blog, a variety of topics are talked about including "Bible/theology, UK politics/poverty and disability/chronic illness". It provides a great insight into Leigh's life with M.E. and in particular I thought you may like to see this post: http://apaththroughthevalley.wordpress.com/2013/05/06/being-there/ Leigh set this up for M.E. Awareness week last year when a few of us wrote about a different topic on our blogs each day, it also has links to the other blogs as well as my Youtube channel.
Next up is Jess with "My Journey Thru M.E.".
http://myjourneythrume.wordpress.com/
Jess was a solicitor who came down with M.E. just a couple of years ago whilst in her 20's. Her blog tells the story of her life through this horrible illness. As well as giving us an insight into her life with ME, Jess also provides links, remedies and her own strategy regarding M.E.
So there we go, there's my last 6!
I'm very tired now and my headache has come back, it's 21:14pm and I need to put my tea on!
Thanks for reading everyone and continue to raise awareness for this terrible illness.
For the rules concerning nominations, check out my last post. :)
Barry x
So basically, this is a continuation from yesterdays post. I've just taken some painkillers so I'm hoping my headache will ease a bit whilst I'm doing this.
Yesterday, I explained the rules of the Blog Awards started by Sally. It's a great idea and as I want to try and raise as much awareness as possible, I'm going to share with you 6 others blogs. I shared 4 with you yesterday and I thought I'd take the tally up to 10!
Here goes...
This is Megan with "my chronic life journey".
http://mychroniclifejourney.com/
Megan was diagnosed last April after being rushed to hospital with extreme stomach cramps. A lot of Megan's posts provide useful tips for those suffering with M.E. She has also started up the "Foggy Frog and the Pain Gang Campaign" which you should check out.
Next up is Ali with "All about ME!".
http://beingamummywithme.blogspot.co.uk/
Ali suffers with severe M.E. and gives us a great insight into what it's like to be a mum whilst suffering with the illness. From the preparations through to the pregnancy, this is a must read for any mums to be.
Next up is Cort Johnson with his blog on the "Health Rising" website.
http://www.cortjohnson.org/blog/author/Cortttt/
Cort writes many articles based on facts and reports. It's a must read for those who are into statistics and for those looking to help find a cure to this illness. The article "What stops you from trying to get better? An ME/CFS and Fibromyalgia community report" may be of particular interest to you. http://www.cortjohnson.org/blog/2014/02/10/stops-trying-get-better-me-cfs-fibromyalgia-community-report/
Next up is Cari with her blog on the "Heal Click" website.
http://blog.healclick.com/author/cari
Cari's blog is very much like Cort's blog as she writes many articles based on facts and reports. "Sensory Overload & Lack of Inhibition in Fibromyalgia & MECFS may interest you in particular: http://blog.healclick.com/fibromyalgia/sensory-overload-in-fibromyalgia-mecfs
Next up is Leigh with "a Path Through the Valley".
http://apaththroughthevalley.wordpress.com/
Leigh has suffered with M.E. since the age of 15. In this blog, a variety of topics are talked about including "Bible/theology, UK politics/poverty and disability/chronic illness". It provides a great insight into Leigh's life with M.E. and in particular I thought you may like to see this post: http://apaththroughthevalley.wordpress.com/2013/05/06/being-there/ Leigh set this up for M.E. Awareness week last year when a few of us wrote about a different topic on our blogs each day, it also has links to the other blogs as well as my Youtube channel.
Next up is Jess with "My Journey Thru M.E.".
http://myjourneythrume.wordpress.com/
Jess was a solicitor who came down with M.E. just a couple of years ago whilst in her 20's. Her blog tells the story of her life through this horrible illness. As well as giving us an insight into her life with ME, Jess also provides links, remedies and her own strategy regarding M.E.
So there we go, there's my last 6!
I'm very tired now and my headache has come back, it's 21:14pm and I need to put my tea on!
Thanks for reading everyone and continue to raise awareness for this terrible illness.
For the rules concerning nominations, check out my last post. :)
Barry x
Thursday, 20 February 2014
My Nominations for the First ME CFS FMS Blog Awards
Hello!
First of all, I'd like to apologise for the fact I haven't updated this for a bit, I'm coming down with an upper respiratory infection making my M.E. symptoms twice as bad. It's funny, when I was previously very fit and athletic, I was pretty much immune from any infections and very rarely caught them but now it's a different story...
So, the title of this post? I was very kindly nominated for the 'First ME CFS FMS Blog Awards' by Sally Burch with a very kind few sentences explaining what my blog is about:
"This is a very new, but perceptive blog written by a young man suffering with ME. This post on Deteriorating Friendships is likely to resonate with many ME and Fibro patients. And it's not just this post, throughout his blog Barry shows clear insight into what it is like to live with a disabling illness like ME, at a time when the world just expects us all to keep going".
I think it's a great idea to raise awareness and as Sally said, to "reward diligent bloggers, and to help us all to seek out new and interesting blogs".
Before explaining the rules of the nominations, I'm going to pick out a few blogs to write a few lines about...
1st of all, I'd like to share with you Sally's blog "Just ME"
http://sallyjustme.blogspot.co.uk/
This blog is incredibly well researched, easy to read and very informative. Sally doesn't just write about her own battles with ME, she provides a thorough insight into a variety of things such as doctors opinions, interesting articles and advice based on previous experience. Lastly, here is Sally's "ME Backstory" http://sallyjustme.blogspot.co.uk/2013/12/my-me-backstory.html
For the rest of my nominations, I am going to pick out different blogs to those that Sally has nominated, this is to make sure that as much awareness is raised as possible. As I'm new to this blogging, I'm only familiar with a few blogs so here goes...
My next nomination is Clare Wood with "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" and "A life Within an Illness"
http://lifewithmedoingadegree.blogspot.co.uk/
http://alifewithinanillness.blogspot.co.uk/
Clare has had a difficult start to life, she was diagnosed with M.E. at the start of secondary school and was bed bound for 3-4 years whilst studying for her GCSE's. Clare improved for a couple of years after that but deteriorated again after that. Despite this, she has the added pressure of doing her degree. Clare's blogs offer a thorough insight into her life bit by bit. In particular, "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" shows the struggles that occur whilst studying and is something students with M.E. can relate to.
My next nomination is Kealie Mardell with "Seeing is Believing: Canary in a Coalmine"
http://www.kealiemardell.co.uk/2014/01/seeing-is-believing-canary-in-coalmine.html
Kealie recently shared this link with me which I was very grateful for. Kealie is a Mass Communications undergraduate studying in California. She writes about many things and her post about M.E. is incredibly well written. "Canary in a Coalmine" is a documentary to help raise awareness for M.E. This post provides many quotes and a very realistic insight into how it feels to have M.E. It also provides several facts, quotes and is very informative in relation to the documentary.
My next nomination is Nigel & Miranda Brewster with "Dozy Dayz"
http://dozydayz.co.uk/index.html
Nigel & Miranda both suffer with severe M.E. Nigel has suffered for 20 years, Miranda has suffered for 11 years and they've both been bed bound for long periods. "Dozy Dayz" is a website providing tips, books reviews, surveys and videos. The videos http://dozydayz.co.uk/video.html provide good tips as well as personal experiences. They do a lot to raise awareness for M.E. and do a great job of it.
I will probably share a few more tomorrow but I'm very tired now!
And finally...
*************
ME & CFS & FMS BLOGGER AWARDS:
Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FMS).
The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.
It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves. No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.
HOW IT WORKS:
1, On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award. The page will also include this set of instructions and the two award images.
2. Please note, you do not need accept the award. The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.
3. To claim your award:
a) Create a new post on your blog, in which you thank the individual who gave you the award (remember to include a link back to their blog). You can then copy the images to your blog post and/or side bar as you wish.
You may need to click on the image and download it, before putting it into your own post.
Below is the code for adding the small image as a link in your blog side bar if you wish to do so:
<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>
b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special. A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.
c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )
d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs. The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit <insert link to the post you have just created> to collect your Award"
3. Hopefully these awards will spread far and wide. I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.
THANK YOU ALL FOR PARTICIPATING.
Sally
http://sallyjustme.blogspot.co.uk/
First of all, I'd like to apologise for the fact I haven't updated this for a bit, I'm coming down with an upper respiratory infection making my M.E. symptoms twice as bad. It's funny, when I was previously very fit and athletic, I was pretty much immune from any infections and very rarely caught them but now it's a different story...
So, the title of this post? I was very kindly nominated for the 'First ME CFS FMS Blog Awards' by Sally Burch with a very kind few sentences explaining what my blog is about:
"This is a very new, but perceptive blog written by a young man suffering with ME. This post on Deteriorating Friendships is likely to resonate with many ME and Fibro patients. And it's not just this post, throughout his blog Barry shows clear insight into what it is like to live with a disabling illness like ME, at a time when the world just expects us all to keep going".
I think it's a great idea to raise awareness and as Sally said, to "reward diligent bloggers, and to help us all to seek out new and interesting blogs".
Before explaining the rules of the nominations, I'm going to pick out a few blogs to write a few lines about...
1st of all, I'd like to share with you Sally's blog "Just ME"
http://sallyjustme.blogspot.co.uk/
This blog is incredibly well researched, easy to read and very informative. Sally doesn't just write about her own battles with ME, she provides a thorough insight into a variety of things such as doctors opinions, interesting articles and advice based on previous experience. Lastly, here is Sally's "ME Backstory" http://sallyjustme.blogspot.co.uk/2013/12/my-me-backstory.html
For the rest of my nominations, I am going to pick out different blogs to those that Sally has nominated, this is to make sure that as much awareness is raised as possible. As I'm new to this blogging, I'm only familiar with a few blogs so here goes...
My next nomination is Clare Wood with "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" and "A life Within an Illness"
http://lifewithmedoingadegree.blogspot.co.uk/
http://alifewithinanillness.blogspot.co.uk/
Clare has had a difficult start to life, she was diagnosed with M.E. at the start of secondary school and was bed bound for 3-4 years whilst studying for her GCSE's. Clare improved for a couple of years after that but deteriorated again after that. Despite this, she has the added pressure of doing her degree. Clare's blogs offer a thorough insight into her life bit by bit. In particular, "Life with M.E. whilst Studying with the Open University; BSc (hons) Computing, I.T. & Business" shows the struggles that occur whilst studying and is something students with M.E. can relate to.
My next nomination is Kealie Mardell with "Seeing is Believing: Canary in a Coalmine"
http://www.kealiemardell.co.uk/2014/01/seeing-is-believing-canary-in-coalmine.html
Kealie recently shared this link with me which I was very grateful for. Kealie is a Mass Communications undergraduate studying in California. She writes about many things and her post about M.E. is incredibly well written. "Canary in a Coalmine" is a documentary to help raise awareness for M.E. This post provides many quotes and a very realistic insight into how it feels to have M.E. It also provides several facts, quotes and is very informative in relation to the documentary.
My next nomination is Nigel & Miranda Brewster with "Dozy Dayz"
http://dozydayz.co.uk/index.html
Nigel & Miranda both suffer with severe M.E. Nigel has suffered for 20 years, Miranda has suffered for 11 years and they've both been bed bound for long periods. "Dozy Dayz" is a website providing tips, books reviews, surveys and videos. The videos http://dozydayz.co.uk/video.html provide good tips as well as personal experiences. They do a lot to raise awareness for M.E. and do a great job of it.
I will probably share a few more tomorrow but I'm very tired now!
And finally...
*************
ME & CFS & FMS BLOGGER AWARDS:
Awarded by bloggers, to other bloggers, to acknowledge outstanding endeavour in promoting awareness of Myalgic Enchephalomylitis (ME), Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FMS).
The blogs receiving the awards do not need to be dedicated solely to ME, CFS or FMS, but they should contain at least one post that has helped to increase awareness.
It is hoped that these Awards will increase blog readerships and also encourage networking between ME & CFS & FMS bloggers themselves. No matter the title of our diagnosis, patients of these conditions all suffer from a frustrating state of health that is poorly recognised by most of society.
HOW IT WORKS:
1, On receiving the ME & CFS & FMS BLOGGER AWARD, you should be directed to a post that describes why you (and others) have been given this award. The page will also include this set of instructions and the two award images.
2. Please note, you do not need accept the award. The aim of the awards is about recognition and a bit of fun, NOT extra work! Please do not feel pressured to participate.
3. To claim your award:
a) Create a new post on your blog, in which you thank the individual who gave you the award (remember to include a link back to their blog). You can then copy the images to your blog post and/or side bar as you wish.
You may need to click on the image and download it, before putting it into your own post.
Below is the code for adding the small image as a link in your blog side bar if you wish to do so:
<a href="
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html
" target="blank">
<img src="http://i68.photobucket.com/albums/i4/salpublicphotos/BloggerBadge_zps26d28ded.png"/>
</a>
b) List three to ten blogs that you would like to recommend, giving a brief description of why you think each one is special. A couple of lines is fine, but be sure to include a link to each blog you name (or specific page if you prefer) so that others are encouraged to visit.
c) Copy and paste these instructions into your post. Copy from the first *** above, to the last *** below to ensure that every thing is included. (Add the images separately if they don't copy automatically. Control-Shift-V also removes crazy formatting during pasting if that is a problem. ;) )
d) Alert your chosen blog owners to their awards by making a comment on the most recent post of their blogs. The comment could simply read:
"Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit <insert link to the post you have just created> to collect your Award"
3. Hopefully these awards will spread far and wide. I would love to keep track of where the awards end up, so I would be very grateful if participants would also copy their list of awards into a comment beneath this post:
http://sallyjustme.blogspot.com/2014/02/launching-me-cfs-fms-blogger-awards.html.
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.
THANK YOU ALL FOR PARTICIPATING.
Sally
http://sallyjustme.blogspot.co.uk/
Wednesday, 12 February 2014
M.E. - Severe revision has ended!
Hello all!
It's been a very draining few days... I had a nutrition resit exam today, it's an exam I haven't taken for around a year due to numerous reasons... mainly because I wasn't fit enough to travel with the added pressure of it being in the morning (my worst time of day). Luckily I passed! The last few days I've made myself worse due to severe revision but I wanted to make sure I got it out of the way...
I got up shortly after 7am and was out of the house just before 8am. It took me just under an hour to drive to the location where I was having the resit and I was home around 11am. When I got home, I watched some t.v. but had to stop after around half an hour as my aches/pains, fatigue and brain fog were becoming very distracting! I had to have a lie down so I went back to bed for around an hour, still feeling achy etc but I felt marginally better than before I went for a lie down.
This afternoon I paid my M.O.T. (received invoice in the post a few days ago) £420 - ouch! I paid for a lifetime subscription with gigajam (the website I use for keyboard lessons) and I'm having a visit late tomorrow morning from the church pastor for a catch up, I haven't been well enough for church a fair few times recently so it will be nice to have a chat and he's always been helpful. :) I'm seeing my dad tomorrow afternoon (if I'm well enough). He worked a lot so I have to fit in with him and usually see him once a week. If I have a nap early afternoon then my symptoms shouldn't be too bad!
No singing or exercise the last few days, certainly not feeling up to that...
Lastly, there's some terrible winds going on outside. I'm sweating in here but I daren't open this window!
Hope you're all safe and wrapped up indoors!
Speak to you all soon x
It's been a very draining few days... I had a nutrition resit exam today, it's an exam I haven't taken for around a year due to numerous reasons... mainly because I wasn't fit enough to travel with the added pressure of it being in the morning (my worst time of day). Luckily I passed! The last few days I've made myself worse due to severe revision but I wanted to make sure I got it out of the way...
I got up shortly after 7am and was out of the house just before 8am. It took me just under an hour to drive to the location where I was having the resit and I was home around 11am. When I got home, I watched some t.v. but had to stop after around half an hour as my aches/pains, fatigue and brain fog were becoming very distracting! I had to have a lie down so I went back to bed for around an hour, still feeling achy etc but I felt marginally better than before I went for a lie down.
This afternoon I paid my M.O.T. (received invoice in the post a few days ago) £420 - ouch! I paid for a lifetime subscription with gigajam (the website I use for keyboard lessons) and I'm having a visit late tomorrow morning from the church pastor for a catch up, I haven't been well enough for church a fair few times recently so it will be nice to have a chat and he's always been helpful. :) I'm seeing my dad tomorrow afternoon (if I'm well enough). He worked a lot so I have to fit in with him and usually see him once a week. If I have a nap early afternoon then my symptoms shouldn't be too bad!
No singing or exercise the last few days, certainly not feeling up to that...
Lastly, there's some terrible winds going on outside. I'm sweating in here but I daren't open this window!
Hope you're all safe and wrapped up indoors!
Speak to you all soon x
Sunday, 9 February 2014
M.E. - Deteriorating Friendships
Sorry I haven't posted in a few days!
Say, as the title says... Deteriorating Friendships...
It's such a common problem with M.E. sufferers or any Chronic Illness sufferers in general. It's not until recently that I've noticed a change.
Since I was diagnosed last January, friends haven't really questioned me and I thought everything was fine. I was a little upset that they didn't ask how I was but appreciate they were still acting as normal and not holding my illness against me. Really, why should I be appreciative? It sounds like I should be honoured that people still want to know me... Surely that's not right?
Anyway, over the last few months in particular I've been seeing my friends less and less. I've not been able a lot of the time, bedbound for long periods over Christmas but of course everyone gets lazy over Christmas don't they!! I'm just being lazy, of course I'd rather be in bed than out spending time with friends and getting some fresh air, makes sense doesn't it?! Not...
I mentioned on my last post (or the one before) about some comments made to me on New Years Eve. It upset me but then he's probably just very uneducated about what M.E. is... lets give him the benefit of the doubt, a bit cocky but bite your lip sort of guy...
It turns out a much closer friend doesn't believe I really have M.E. too, of course he hasn't approached me about this. In fact I haven't heard a peep out of him since that night... Shows what a slip of the tongue can do... I didn't hear what he was saying and it could have been misinterpreted sure... but thinking back over the past year, how often has this supposed close friend messaged me/called me to see how I am? I could very easily count that on 1 hand. Innocent remarks that totally disregard my illness. So much more, but why go into it?
M.E. is terrible for thoughts, it enables you to think more than you've ever thought before, that includes dwelling on every comment made to you, becoming an anxious wreck and feeling embarrassed when lagging behind because you can't keep up anymore...
One thing is for sure, M.E. eventually can make you VERY thick skinned, if not then how could you survive? So many against you when you've done nothing wrong. Feelings of guilt because you've fallen ill - it's all our fault isn't it!
I can understand people not wanting to read up about M.E. if you're going to come to conclusions about others who have it, DO YOUR RESEARCH! Stop jumping on the bandwagon and realise how selfish you're coming across...
This isn't a rant, these are thoughts and emotions that I know every Chronic Illness sufferer experiences.
I've said it before and I'll say it again, I have many qualifications, finding a job isn't a problem for me... medical experts have diagnosed me with this illness, are you saying they're wrong? Maybe I faked my appointments but of course medical experts could never see through that could they! Why would I want to fake it?
It's outrageous that the biggest challenge of this illness is trying to get "friends" to understand. If that is your mindset then I really don't want to know you!
Having said all that, I have some very supportive people in my life, they outnumber these narrow minded people without question.
Thanks for reading! ;)
Say, as the title says... Deteriorating Friendships...
It's such a common problem with M.E. sufferers or any Chronic Illness sufferers in general. It's not until recently that I've noticed a change.
Since I was diagnosed last January, friends haven't really questioned me and I thought everything was fine. I was a little upset that they didn't ask how I was but appreciate they were still acting as normal and not holding my illness against me. Really, why should I be appreciative? It sounds like I should be honoured that people still want to know me... Surely that's not right?
Anyway, over the last few months in particular I've been seeing my friends less and less. I've not been able a lot of the time, bedbound for long periods over Christmas but of course everyone gets lazy over Christmas don't they!! I'm just being lazy, of course I'd rather be in bed than out spending time with friends and getting some fresh air, makes sense doesn't it?! Not...
I mentioned on my last post (or the one before) about some comments made to me on New Years Eve. It upset me but then he's probably just very uneducated about what M.E. is... lets give him the benefit of the doubt, a bit cocky but bite your lip sort of guy...
It turns out a much closer friend doesn't believe I really have M.E. too, of course he hasn't approached me about this. In fact I haven't heard a peep out of him since that night... Shows what a slip of the tongue can do... I didn't hear what he was saying and it could have been misinterpreted sure... but thinking back over the past year, how often has this supposed close friend messaged me/called me to see how I am? I could very easily count that on 1 hand. Innocent remarks that totally disregard my illness. So much more, but why go into it?
M.E. is terrible for thoughts, it enables you to think more than you've ever thought before, that includes dwelling on every comment made to you, becoming an anxious wreck and feeling embarrassed when lagging behind because you can't keep up anymore...
One thing is for sure, M.E. eventually can make you VERY thick skinned, if not then how could you survive? So many against you when you've done nothing wrong. Feelings of guilt because you've fallen ill - it's all our fault isn't it!
I can understand people not wanting to read up about M.E. if you're going to come to conclusions about others who have it, DO YOUR RESEARCH! Stop jumping on the bandwagon and realise how selfish you're coming across...
This isn't a rant, these are thoughts and emotions that I know every Chronic Illness sufferer experiences.
I've said it before and I'll say it again, I have many qualifications, finding a job isn't a problem for me... medical experts have diagnosed me with this illness, are you saying they're wrong? Maybe I faked my appointments but of course medical experts could never see through that could they! Why would I want to fake it?
It's outrageous that the biggest challenge of this illness is trying to get "friends" to understand. If that is your mindset then I really don't want to know you!
Having said all that, I have some very supportive people in my life, they outnumber these narrow minded people without question.
Thanks for reading! ;)
Thursday, 6 February 2014
M.E. - Finding balanced forms of entertainment
Here again... and at least this time it isn't past 3am in the morning! I'll be in bed shortly after 1am... mind you, I was last night! Hopefully I can sleep better tonight...
Today has been a pretty average day in terms of my M.E. I admit, I just had to nap before... not surprising considering I didn't get to sleep till 4.30am yesterday morning... The positive is that it wasn't during the evening! I've managed to stay awake this evening...
You know that feeling when you feel you've wasted the day sat at your computer but you continue to do it anyway? That's me today and something I experience more often than I would like. It sends you into a trance... I'm baffled at how much time passes when I'm on the computer - looking at facebook, football news, general news, twitter, blogger, youtube etc etc - How on earth can these things keep me occupied for hours on end? I don't know, but they do!
I think it's so easy to do because you can sit at your computer even with bad brain fog, it doesn't require a high level of concentration - playing songs on loop, general chit chat that your brain is so used to it becomes 2nd nature and you don't have to think about what you say, not only that but computer chairs can be very comfortable... mine is anyway!
I've banned myself from PC games - Whenever I played Football Manager, I literally played it for hours and knew it was doing me no good. Unfortunately, less time spent on the computer means either television or bed... unless you're having a reasonable day and you can leave the house but most of the time these are the only options we have when we're housebound.
What about reading a book? I've tried to start reading more but not only does my head hurt, information tends not to go in after between 5-10 minutes!
I have my singing but again, it's very energy consuming... correct breathing techniques, listening to your own voice as well as listening to the tune can be exhausting, not to mention all the warming up scales!
I find it's a very frustrating vicious circle that we find ourselves in - evening inviting friends round is incredibly exhausting, making conversation, focusing all your energy on your friends is mentally draining.
The only thing really that we can do is to find that fine line, limiting time spent doing all these things. Finding an even balance - spacing it out which is easier said than done.
Enough waffle from me, I have to drop the dog off to be trimmed at 9am followed by a hair appointment at 10.15am - no doubt I'll be needing that afternoon nap!
See you all tomorrow x
Today has been a pretty average day in terms of my M.E. I admit, I just had to nap before... not surprising considering I didn't get to sleep till 4.30am yesterday morning... The positive is that it wasn't during the evening! I've managed to stay awake this evening...
You know that feeling when you feel you've wasted the day sat at your computer but you continue to do it anyway? That's me today and something I experience more often than I would like. It sends you into a trance... I'm baffled at how much time passes when I'm on the computer - looking at facebook, football news, general news, twitter, blogger, youtube etc etc - How on earth can these things keep me occupied for hours on end? I don't know, but they do!
I think it's so easy to do because you can sit at your computer even with bad brain fog, it doesn't require a high level of concentration - playing songs on loop, general chit chat that your brain is so used to it becomes 2nd nature and you don't have to think about what you say, not only that but computer chairs can be very comfortable... mine is anyway!
I've banned myself from PC games - Whenever I played Football Manager, I literally played it for hours and knew it was doing me no good. Unfortunately, less time spent on the computer means either television or bed... unless you're having a reasonable day and you can leave the house but most of the time these are the only options we have when we're housebound.
What about reading a book? I've tried to start reading more but not only does my head hurt, information tends not to go in after between 5-10 minutes!
I have my singing but again, it's very energy consuming... correct breathing techniques, listening to your own voice as well as listening to the tune can be exhausting, not to mention all the warming up scales!
I find it's a very frustrating vicious circle that we find ourselves in - evening inviting friends round is incredibly exhausting, making conversation, focusing all your energy on your friends is mentally draining.
The only thing really that we can do is to find that fine line, limiting time spent doing all these things. Finding an even balance - spacing it out which is easier said than done.
Enough waffle from me, I have to drop the dog off to be trimmed at 9am followed by a hair appointment at 10.15am - no doubt I'll be needing that afternoon nap!
See you all tomorrow x
Wednesday, 5 February 2014
M.E. - Sleep Problems
Morning... It's just turned 3:16am and it's raining pretty heavily outside. Not only that but there's an annoying green light shining through my window (I live behind the back of a shop).
Why can't I get to sleep? To be honest, it's probably because I had an hours nap this evening but something doesn't quite add up.
If I ever nap during the day, I can nap again and again and again but during the evening although I'm tired I just can't get to sleep.
Maybe it's a mixture of things: Anxiety, stress, temperature, thoughts etc etc...
I know a lot will relate to me when I say that night time is when a lot of us will start to conjure up our thoughts and just can't let our minds rest. Maybe a comment someone has said, insecurities, stress created through jobs you know have to be done, the knowledge that when you wake up you have to face another day.
From time to time, these all tend to play a part. A big problem of mine is knowing that when I wake up in the morning that I'm going to be at my worst. Before you know it, afternoon has come along and there's the mad rush to get a few things done then back to square 1 in the evening. There's just not enough hours in the day, or too many depending on your outlook!
At one point, I thought that it could have something to do with the medication I take (anti-depressants) which I've been on for around 5 years now. I've been on the latest lot for around 3 years. I originally took them at night but started taking them in the morning and unsurprisingly for me, it didn't make a difference!
Apparently, spending time on your computer before bed time can have an affect. It makes it hard for our minds to switch off - so why am I writing a blog before getting back into bed?!?!?!
Maybe I eat too late, I admit it wasn't far from 10pm when I had my tea - I fell asleep near 8pm when I was going to put it on and woke up an hour later - took me twice as long to make because I was dazed! Typically though, I eat between 7 and 8 - apparently it's not good to eat after 8pm - again, I admit I don't stick to this, I get too hungry and need my food! I've started having a protein shake between tea and bed - muscles repair when your body is totally relaxed (in your sleep) so it makes sense.
That's enough rambling on from me - I've been writing this post for 18 minutes!
Night x
Why can't I get to sleep? To be honest, it's probably because I had an hours nap this evening but something doesn't quite add up.
If I ever nap during the day, I can nap again and again and again but during the evening although I'm tired I just can't get to sleep.
Maybe it's a mixture of things: Anxiety, stress, temperature, thoughts etc etc...
I know a lot will relate to me when I say that night time is when a lot of us will start to conjure up our thoughts and just can't let our minds rest. Maybe a comment someone has said, insecurities, stress created through jobs you know have to be done, the knowledge that when you wake up you have to face another day.
From time to time, these all tend to play a part. A big problem of mine is knowing that when I wake up in the morning that I'm going to be at my worst. Before you know it, afternoon has come along and there's the mad rush to get a few things done then back to square 1 in the evening. There's just not enough hours in the day, or too many depending on your outlook!
At one point, I thought that it could have something to do with the medication I take (anti-depressants) which I've been on for around 5 years now. I've been on the latest lot for around 3 years. I originally took them at night but started taking them in the morning and unsurprisingly for me, it didn't make a difference!
Apparently, spending time on your computer before bed time can have an affect. It makes it hard for our minds to switch off - so why am I writing a blog before getting back into bed?!?!?!
Maybe I eat too late, I admit it wasn't far from 10pm when I had my tea - I fell asleep near 8pm when I was going to put it on and woke up an hour later - took me twice as long to make because I was dazed! Typically though, I eat between 7 and 8 - apparently it's not good to eat after 8pm - again, I admit I don't stick to this, I get too hungry and need my food! I've started having a protein shake between tea and bed - muscles repair when your body is totally relaxed (in your sleep) so it makes sense.
That's enough rambling on from me - I've been writing this post for 18 minutes!
Night x
Tuesday, 4 February 2014
M.E. - Why do I have to use Walking Aids?!
Good morning! (very early morning)
It's 01:39am and I'm straight off to bed after I've typed this.
So how's today gone? Very well actually...
Very well as in I've stuck to my routine well and got my tasks done, fatigue wise I haven't lay down all day so I shouldn't have much of a problem getting to sleep (hopefully not anyway) though my pains aren't great today. Well, they are great depending on which way you look at it! I had to take painkillers this evening for the 1st time in a while as they got to the point where I didn't the dog to sit on my knee the pains were that bad. Also, despite not being overly physically tired, my eyes were extremely sore this evening to the point where I couldn't open them for a bit. No blurred vision either... anyone experience anything similar?
Anyway... I think the pains in my legs today have been brought on by a couple of things... 1st of all I didn't have my mid afternoon nap and when I don't have that my pains tend to be worse throughout the day. Also, I've done more walking around the house than I usually would, needless trips up and down stairs which take their toll on me without me realizing until afterwards!
I'm still on crutches/walking stick whenever I leave the house - the pains kick in worse if I walk anything over a few minutes (they're always there but they get worse the more I walk). I do think to myself "How long will I be using these walking aids for?", "When will I know when to stop using them?" "I get the impression others feel I shouldn't be using them at all!". These are the thoughts running through my head every time I pick up my walking stick or my crutch(es).
It's got to the point where I feel embarrassed when I go to pick up my stick. I instinctively try to hide it when meeting people I don't know to save any explaining or the dreaded question "What have you done to your leg?"
What is it a "friend" said to me recently? "I can't believe that the NHS pay for that". I gave him the benefit of the doubt because he'd had alcohol but if these are the thoughts of people I'm spending time with then what on earth are people I don't know going to think?! And by the way, the NHS DOES NOT fund my walking aids for me, I DO! I've never really liked him anyway...
When you're ill you can dwell on odd narrow minded comments like that but who's fault is it really? It's all down to a lack of knowledge and a lack of understanding.
Anyway, that's my rant done with for today!
See you all tomorrow x
It's 01:39am and I'm straight off to bed after I've typed this.
So how's today gone? Very well actually...
Very well as in I've stuck to my routine well and got my tasks done, fatigue wise I haven't lay down all day so I shouldn't have much of a problem getting to sleep (hopefully not anyway) though my pains aren't great today. Well, they are great depending on which way you look at it! I had to take painkillers this evening for the 1st time in a while as they got to the point where I didn't the dog to sit on my knee the pains were that bad. Also, despite not being overly physically tired, my eyes were extremely sore this evening to the point where I couldn't open them for a bit. No blurred vision either... anyone experience anything similar?
Anyway... I think the pains in my legs today have been brought on by a couple of things... 1st of all I didn't have my mid afternoon nap and when I don't have that my pains tend to be worse throughout the day. Also, I've done more walking around the house than I usually would, needless trips up and down stairs which take their toll on me without me realizing until afterwards!
I'm still on crutches/walking stick whenever I leave the house - the pains kick in worse if I walk anything over a few minutes (they're always there but they get worse the more I walk). I do think to myself "How long will I be using these walking aids for?", "When will I know when to stop using them?" "I get the impression others feel I shouldn't be using them at all!". These are the thoughts running through my head every time I pick up my walking stick or my crutch(es).
It's got to the point where I feel embarrassed when I go to pick up my stick. I instinctively try to hide it when meeting people I don't know to save any explaining or the dreaded question "What have you done to your leg?"
What is it a "friend" said to me recently? "I can't believe that the NHS pay for that". I gave him the benefit of the doubt because he'd had alcohol but if these are the thoughts of people I'm spending time with then what on earth are people I don't know going to think?! And by the way, the NHS DOES NOT fund my walking aids for me, I DO! I've never really liked him anyway...
When you're ill you can dwell on odd narrow minded comments like that but who's fault is it really? It's all down to a lack of knowledge and a lack of understanding.
Anyway, that's my rant done with for today!
See you all tomorrow x
Monday, 3 February 2014
M.E. - A wasted day: What about my daily tasks?!
Good evening...
I type this as I'm listening to the end of the Manchester City v Chelsea game on the radio!
So, as the title says... A wasted day! Sound familiar?!
I got off to a decent start, by that I mean I was out of bed before 10am with my breakfast...
The time I tend to need a lie down most is shortly after my breakfast so that's what happened...
I woke up at around 2.30pm and had my lunch at 3pm - 2 hours later than I had planned!
After then, another quick lie down followed by a bit of Prime Suspect!
I have a mild form as Asperger Syndrome meaning I am not content unless I have my daily tasks done... all when added up are doable with lots of pacing but realistically too much for someone with M.E. to do.
I like to have my meals at roughly the same time each day. I eat 5 times a day (trying to bulk up a bit after losing some weight). 1st meal starting at 10am and last meal at 11pm.
Before 2 of these lesser meals, I like to have my workout spread out into 2 parts though my body isn't always up to this.
I like to do my vocal/breathing workout, a little bit of piano and oh, I have some Theology coursework to do (this rarely gets done if I'm honest).
I'm obviously being too hard on myself but there are many emotions involved here.
Contentment when my tasks aren't done. I have many things in life I want to achieve, if I sit around all day then how am I going to progress?!
Depression - Ok, I use this term lightly here... A better phrase would be "fed up". This occurs when my tasks aren't done!
Obsession - well I can't help this, it's one of Autism's finest traits... At least I'm obsessing over the right things! Or am I?
In my situation, out the top of my head these 3 emotions are probably the most important regarding my daily tasks. If you look at the 3, they all contradict each other to an extent?
Maybe I'm fighting a losing battle but at least I'm fighting... with caution!
Most importantly I listen to my body, only my body can tell me how each day is going to pan out.
Hope you've all had a lovely day x
I type this as I'm listening to the end of the Manchester City v Chelsea game on the radio!
So, as the title says... A wasted day! Sound familiar?!
I got off to a decent start, by that I mean I was out of bed before 10am with my breakfast...
The time I tend to need a lie down most is shortly after my breakfast so that's what happened...
I woke up at around 2.30pm and had my lunch at 3pm - 2 hours later than I had planned!
After then, another quick lie down followed by a bit of Prime Suspect!
I have a mild form as Asperger Syndrome meaning I am not content unless I have my daily tasks done... all when added up are doable with lots of pacing but realistically too much for someone with M.E. to do.
I like to have my meals at roughly the same time each day. I eat 5 times a day (trying to bulk up a bit after losing some weight). 1st meal starting at 10am and last meal at 11pm.
Before 2 of these lesser meals, I like to have my workout spread out into 2 parts though my body isn't always up to this.
I like to do my vocal/breathing workout, a little bit of piano and oh, I have some Theology coursework to do (this rarely gets done if I'm honest).
I'm obviously being too hard on myself but there are many emotions involved here.
Contentment when my tasks aren't done. I have many things in life I want to achieve, if I sit around all day then how am I going to progress?!
Depression - Ok, I use this term lightly here... A better phrase would be "fed up". This occurs when my tasks aren't done!
Obsession - well I can't help this, it's one of Autism's finest traits... At least I'm obsessing over the right things! Or am I?
In my situation, out the top of my head these 3 emotions are probably the most important regarding my daily tasks. If you look at the 3, they all contradict each other to an extent?
Maybe I'm fighting a losing battle but at least I'm fighting... with caution!
Most importantly I listen to my body, only my body can tell me how each day is going to pan out.
Hope you've all had a lovely day x
Sunday, 2 February 2014
M.E. - Who ever though that attending church would be such hard work?!
Hello all...
Continuing from the title of this post... I've done nothing!
Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:
1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.
As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.
By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.
Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.
After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?
Should I feel guilty? The answer is NO but my answer is YES!
Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!
Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.
Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!
Here's to hoping we all get off to a good start this coming week! x
Continuing from the title of this post... I've done nothing!
Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:
1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.
As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.
By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.
Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.
After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?
Should I feel guilty? The answer is NO but my answer is YES!
Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!
Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.
Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!
Here's to hoping we all get off to a good start this coming week! x
Saturday, 1 February 2014
M.E. - "One step forward, four steps back!"
Hello!
A quick update before I go to bed... I managed to stay up for 12 hours without going to sleep in between though I have had a couple of lie downs!
As we speak, I'm very tired and my legs are very achy and my brain is functioning pretty slow...
I'm sure most of you will relate to me when I say this.... Regarding each day - There has never been a truer saying than "One step forward, two steps back" although in my case it tends to be "One step forward, four steps back!"
When we have a "good" day we tend to overdo it due to being so excited that we can actually function properly to an extent. In fact it's probably the adrenaline that the excitement brings on that creates payback!
It's a very difficult situation, there are things that "have" to be done despite how good or bad you might feel and especially at a young age you feel like there's so much to do that you might not get the chance to do again...
A bad habit of mines tends to be leaving all my tasks until evening! I genuinely feel unable to do most of these tasks during morning/afternoon - in fact, morning doesn't really exist for me anymore! There's a pattern that has evolved: If I get up before 10am then my fatigue/aches is worse throughout the day. Unfortunately it's not always possible to stay in bed till 10am... I really hate it if I'm honest, I was always an early bird, I love the idea of having a productive morning going into a more relaxing afternoon/evening.
Anyway - I'm rabbiting on and I need some sleep!
Church in the morning... It pains me to say this but I've got to the point where I dread church, not because I dislike it, I'm a devout Christian. The reason I have come to dread Sunday morning is because it involves me getting up earlier, socializing with bad brain fog/aches and by afternoon I have to lie down and next thing I know, it's evening!
Hope you're all having a better weekend than me! ;)
A quick update before I go to bed... I managed to stay up for 12 hours without going to sleep in between though I have had a couple of lie downs!
As we speak, I'm very tired and my legs are very achy and my brain is functioning pretty slow...
I'm sure most of you will relate to me when I say this.... Regarding each day - There has never been a truer saying than "One step forward, two steps back" although in my case it tends to be "One step forward, four steps back!"
When we have a "good" day we tend to overdo it due to being so excited that we can actually function properly to an extent. In fact it's probably the adrenaline that the excitement brings on that creates payback!
It's a very difficult situation, there are things that "have" to be done despite how good or bad you might feel and especially at a young age you feel like there's so much to do that you might not get the chance to do again...
A bad habit of mines tends to be leaving all my tasks until evening! I genuinely feel unable to do most of these tasks during morning/afternoon - in fact, morning doesn't really exist for me anymore! There's a pattern that has evolved: If I get up before 10am then my fatigue/aches is worse throughout the day. Unfortunately it's not always possible to stay in bed till 10am... I really hate it if I'm honest, I was always an early bird, I love the idea of having a productive morning going into a more relaxing afternoon/evening.
Anyway - I'm rabbiting on and I need some sleep!
Church in the morning... It pains me to say this but I've got to the point where I dread church, not because I dislike it, I'm a devout Christian. The reason I have come to dread Sunday morning is because it involves me getting up earlier, socializing with bad brain fog/aches and by afternoon I have to lie down and next thing I know, it's evening!
Hope you're all having a better weekend than me! ;)
Friday, 31 January 2014
M.E. - Typical Payback
Hello all!
Well, the good news is that I haven't had to leave the house all day... however! The bad news is that I've been energyless all day!
It just goes to show that when you have a good day like I did on Wednesday, you will pay for it at some point afterwards!
The last 2 days have consisted of lots of lying down and well... not much else!
It's currently 18:50 and I'm due to make tea in about an hour - lets hope it's not too strenous...
I'd like to get my vocal workout done but it might be aiming a little too far to attempt some songs... very gentle exercise and maybe 10 minutes on the piano.
Tomorrow I will be meeting a friend for coffee, something I haven't done much of recently due to either not being up to it or pre-planned arrangements.
Lets hope that tomorrow is a better day!
Barry x
Well, the good news is that I haven't had to leave the house all day... however! The bad news is that I've been energyless all day!
It just goes to show that when you have a good day like I did on Wednesday, you will pay for it at some point afterwards!
The last 2 days have consisted of lots of lying down and well... not much else!
It's currently 18:50 and I'm due to make tea in about an hour - lets hope it's not too strenous...
I'd like to get my vocal workout done but it might be aiming a little too far to attempt some songs... very gentle exercise and maybe 10 minutes on the piano.
Tomorrow I will be meeting a friend for coffee, something I haven't done much of recently due to either not being up to it or pre-planned arrangements.
Lets hope that tomorrow is a better day!
Barry x
Thursday, 30 January 2014
M.E. - The Dentist
Hello all!
Well today hasn't been a great day... I think the last couple of days have caught up with me. I had the dreaded trip to the dentist in the morning! Not because I was worried about having anything done but because it involves me driving into town and walking a shortish distance! Anyway... the dentist told me I was looking after my teeth very well - that's another benefit to a healthy diet... healthy teeth, as long as you brush them too of course! He always asks me about my M.E. and is understanding so it's great that someone on the outside world actually understands... no explaining needs to be done! :)
I was finished late morning, went home and pretty much crashed out on my bed... watched a little bit of t.v. and made all my meals and buy early evening time I had crashed out again, this time for around 2 hours at a guess... I woke up around 8.30pm so my tea was quite late!
Anyway, lets hope tomorrow is a better day... maybe I won't have to leave the house!!
Hope you've all had a great day...
Barry x
Well today hasn't been a great day... I think the last couple of days have caught up with me. I had the dreaded trip to the dentist in the morning! Not because I was worried about having anything done but because it involves me driving into town and walking a shortish distance! Anyway... the dentist told me I was looking after my teeth very well - that's another benefit to a healthy diet... healthy teeth, as long as you brush them too of course! He always asks me about my M.E. and is understanding so it's great that someone on the outside world actually understands... no explaining needs to be done! :)
I was finished late morning, went home and pretty much crashed out on my bed... watched a little bit of t.v. and made all my meals and buy early evening time I had crashed out again, this time for around 2 hours at a guess... I woke up around 8.30pm so my tea was quite late!
Anyway, lets hope tomorrow is a better day... maybe I won't have to leave the house!!
Hope you've all had a great day...
Barry x
Wednesday, 29 January 2014
M.E. - WRAG group drama
Hello there!
1st of all, I have my car back though it's costing me £400 - ouch!
2nd of all, I crashed out for half an hour at 12pm but despite that I had a very good day... very good in the fact I felt relaxed it had been very productive for me. I updated my blogs, I got bits of leisure activity in there, I cooked tea, did a gentle workout and read a book in bed which I haven't done for a while... having said that, I was in bed around 11pm and didn't get up this morning till past 10am!!! Must have needed it!
Right, onto today...
Well it really is beyond belief... As you probably know, I had to attend a Work-Related Activity Group today to help me prepare to get back into work despite being unable to health wise. So I got to the place for 11am and when I arrived, I spoke to a lady who said they were closed today... Bit of an awkward silence... Apparently I wasn't even on their system?! On my letter it had a London address which I thought was surely a misprint but in fact it wasn't a misprint! My appointment was actually down in London... For those who don't know, I live in a little town called Southport near Liverpool! A few things I couldn't get my head around... 1st of all, it was confirmed the location of this appointment on the phone and face to face... 2nd of all the letter that was sent out to me saying I had an appointment in London was sent to a PR postcode... and I'm pretty sure most people would know that PR is a Preston postcode so surely someone would have twigged on before sending the letter out? Obviously not!
So anyway, I'm being sent another letter in the post asap to arrange another appointment!
Do you ever feel like the World is against you sometimes?!... Well the Government more like...
Hope you're all having a better day than I am so far!
Barry x
1st of all, I have my car back though it's costing me £400 - ouch!
2nd of all, I crashed out for half an hour at 12pm but despite that I had a very good day... very good in the fact I felt relaxed it had been very productive for me. I updated my blogs, I got bits of leisure activity in there, I cooked tea, did a gentle workout and read a book in bed which I haven't done for a while... having said that, I was in bed around 11pm and didn't get up this morning till past 10am!!! Must have needed it!
Right, onto today...
Well it really is beyond belief... As you probably know, I had to attend a Work-Related Activity Group today to help me prepare to get back into work despite being unable to health wise. So I got to the place for 11am and when I arrived, I spoke to a lady who said they were closed today... Bit of an awkward silence... Apparently I wasn't even on their system?! On my letter it had a London address which I thought was surely a misprint but in fact it wasn't a misprint! My appointment was actually down in London... For those who don't know, I live in a little town called Southport near Liverpool! A few things I couldn't get my head around... 1st of all, it was confirmed the location of this appointment on the phone and face to face... 2nd of all the letter that was sent out to me saying I had an appointment in London was sent to a PR postcode... and I'm pretty sure most people would know that PR is a Preston postcode so surely someone would have twigged on before sending the letter out? Obviously not!
So anyway, I'm being sent another letter in the post asap to arrange another appointment!
Do you ever feel like the World is against you sometimes?!... Well the Government more like...
Hope you're all having a better day than I am so far!
Barry x
Tuesday, 28 January 2014
M.E. - Introductory Blog
So 1st of all, here's my latest M.E. Vlog regarding recent events! - http://www.youtube.com/watch?v=Wu6-eWzYlcc
And 2nd of all, here's my Introductory Vlog I did almost a year ago regarding the background history to my M.E. diagnosis - http://www.youtube.com/watch?v=JE61Vd6Wap8
Ok, so now I've shared those links with you, I'll share just 1 more! http://www.youtube.com/playlist?list=PLvX-06vtGjR5FJTp0iCJ-C135yKG5jF45 - This is a playlist to all my previous M.E. Vlogs. :)
So this morning, 28th of January (the year's flying by already!) and as we speak it's 09:07am!!?? I was up before 08:00am??!! The reason is that my car is in for its MOT. Surprisingly when I woke up this morning I didn't feel as bad as I thought I would so after dropping my car off, I decided to walk down the road before calling a taxi home just to see how I got on. At the time I felt fine, had all these ideas of getting all my jobs done this morning so I can relax more this afternoon and here I am with very painful legs and fairly heavy brain fog. I can't remember all of what I've written so far, I type as I think and it may not always make sense!
So lets see what the rest of the day has to bring - I'm thinking painkillers before breakfast!!!
Hope everyone has a lovely day!
Barry x
And 2nd of all, here's my Introductory Vlog I did almost a year ago regarding the background history to my M.E. diagnosis - http://www.youtube.com/watch?v=JE61Vd6Wap8
Ok, so now I've shared those links with you, I'll share just 1 more! http://www.youtube.com/playlist?list=PLvX-06vtGjR5FJTp0iCJ-C135yKG5jF45 - This is a playlist to all my previous M.E. Vlogs. :)
So this morning, 28th of January (the year's flying by already!) and as we speak it's 09:07am!!?? I was up before 08:00am??!! The reason is that my car is in for its MOT. Surprisingly when I woke up this morning I didn't feel as bad as I thought I would so after dropping my car off, I decided to walk down the road before calling a taxi home just to see how I got on. At the time I felt fine, had all these ideas of getting all my jobs done this morning so I can relax more this afternoon and here I am with very painful legs and fairly heavy brain fog. I can't remember all of what I've written so far, I type as I think and it may not always make sense!
So lets see what the rest of the day has to bring - I'm thinking painkillers before breakfast!!!
Hope everyone has a lovely day!
Barry x
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