Latest #Spoonie Vlog, this time about the difficulties of study!
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts
Monday, 18 April 2016
Tuesday, 12 April 2016
#Spoonie Virus - 4
Thanks everyone for the lovely comments and support re my latest vlogs. I am aware there's people who have messaged me and I promise I will get back to you but it's been a very stressful week that's been taken over with coursework, hence no vlog yesterday trying to get it done ASAP! Hope you're all having a pain free day x
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Here's the playlist: https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Sunday, 10 April 2016
#Spoonie Sleep - 3
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
One thing I forgot to add *brain fog* is that mornings are incredible difficult, especially with the pain/stiffness/fatigue etc.
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
One thing I forgot to add *brain fog* is that mornings are incredible difficult, especially with the pain/stiffness/fatigue etc.
Saturday, 9 April 2016
#Spoonie Relationships - 2
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
https://www.youtube.com/playlist?list=PLvX-06vtGjR590vqaAofP2A48AiTbOgmK
Friday, 8 April 2016
#Spoonie Birthday's - 1
This is my new #spoonie series to help raise awareness for invisible chronic illnesses and to also connect with other #spoonies. Vids will be no longer than 5 minutes long making it more watchable for those who struggle. Basically these are just my views on particular subjects that I hope others can relate to.
Monday, 4 April 2016
Sunday, 18 January 2015
January's update...
Hello everyone!
I hope you're all having a wonderful weekend...
Thought I'd give you an update as there's been quite a lot been going on this past few weeks. Unfortunately, one of my rats Pumpkin had to go today. The local vets were closed so she had to endure a 25 minute drive wrapped in a towel. After speaking to the vet over the phone yesterday, the problem was what he expected. An infection of the uterus. She was losing blood and was incredibly lethargic. I actually wondered if she'd developed M.E. !!! She didn't appear to be in any pain but she was very weak and had lost quite a lot of weight. She was meant to be going in tomorrow but I felt another day was just too much for her.
Here's a picture of her in the car on the way to the vets this morning, I felt she knew what was going to happen and I'm just glad she spent the last 3 months of her life in a loving home rather than in a pet shop. She was prone to stress and developed scabs over her eyes which disappeared after a week of living here. She will be buried in North Wales like the others wrapped in 1 of my hooded tops. It's always a hard time visiting my Grandad physically with the journey but it's for a good cause...
RIP Pumpkin xxx
She could also have had a small tumour which would have been impossible to find without operating which she clearly wasn't ready for. It brings me onto the next subject which is my other rat Daisy, she had a tumour removed from her throat just a couple of weeks before. She and Pumpkin developed a real bond which was nice to see.
Moving on...
I've been very up and down physically, mentally I've been fine though it doesn't help seeing the headlines in this weeks papers indicating that M.E. sufferers fear exercise. FEAR?! I've been going to the gym since I was 14 years old and became a fully qualified personal trainer. Why on earth would I be scared of going to the gym? I can't physically handle it anymore and for the past 2 years have been trying to find out ways I can incorporate some exercise without worsening my M.E. symptoms! The sad thing is that people believe what they read in the newspapers... it's an ongoing battle but we won't be defeated! I even bought some kettle bells the other day so I could try something new, I wouldn't have been seen dead with the pink ones a couple of years back but now it would be an achievement to get through a workout with them... However I did have my mum in mind when I bought them, I've started her on a diet and she'll be using these very soon... She's lost 3lbs in her first week so it's working!
I've started her (and myself) on the juices. Only 1 a day though as I firmly believe you need lots of solid foods in your daily diet... the juice is very tasty though!
Anyway, mornings have been very hard for me recently. I've been waking up in quite a bit of pain that worsens if I get up and do my stuff like making breakfast and having a shower. I like to keep clean but showering is a real chore and I need a fair amount of rest after having 1. It's been recommended that I purchase a shower stool but my bath is too small so it's not possible. The mornings aren't helped by having 5 cats waiting for me as soon as I enter the kitchen...
I am actually thinking of coming off my painkillers altogether because they just don't seem to be working. I've been on them for a while and I'm on a high dose. I'm experiencing side effects too so I don't think they'd be too much of a loss...I'm also thinking of changing my doctor because as nice as she is, she admits that she doesn't really have a clue about what M.E. is and I've heard a few people recommend a good doctor at another surgery local to me so that's the next step...
There's also a lot going on with the renewal of my ESA benefits which I don't really like to talk about but I do just to show how hard they make it and basically to put to bed any doubts about whether I'm "faking" it or not.
I've seen the Welfare Rights team and I learned a lot. I won't go into it but my "adviser" at WRAG (Work-related assessment group) could be in a bit of trouble as 1) she told me I couldn't have anyone go to the appointments with me and 2) she totally dismissed a factual report from the hospital telling her I couldn't participate in any activities. Just to add salt to the wounds, she's told me that it's mandatory I attend a "psychological motivational course". How insulting is that?! This is where my local MP is getting involved... it's been needless stress but it's getting sorted.
What else? My book! Wow time is flying... I am making progress but because my health has been up and down it's been hard to be consistent with my writing. I've also discovered a new word... "voxpopping". Basically I've been invited to go and ask the public in the city for their thoughts and blessings. I'm not entirely sure myself but it's something I'm interested in as it's helping to raise awareness. It'll be a little nerve wracking because I'm not the most social guy but then why not?!
I'm also going to a social gathering for a friends birthday, there's going to be a lot there so it's a big deal for me. A few months back I would have said no but I'm determined that I push myself that bit further this year to do more... let's see what my body's capable of and if I've made much progress!
There's lots of little things in the pipeline but as my head has gone very foggy I'll leave the post here. There were a few more pics but I'll share them another time.
Barry x
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)!
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
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