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.

You can see her wound above, such a warrior. She acted completely normal when I picked her up from the vets and she was just so glad to see me. Unfortunately, just 2 days after her op she has developed another tumour which isn't as likely to be cancerous. It's unlikely to be connected so it's a case of keeping a close eye and as soon as it grows there's the possibility of removing it, so hopefully Daisy will be with us for a bit longer! They all had a nice treat when Daisy came home...



















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

Life Is Complicated: New Book Announcement!

Hello everyone and a very Happy New Year!

Mine didn't get off to the best start when I woke up just before midday though I must've needed the sleep!

A couple of posts ago I talked about what I wanted to achieve this year so I'm not going to mention my goals in this post.

One thing that is probably a few weeks away from being complete is my new book titled "Life Is Complicated: My journey with Asperger Syndrome". It's been hard writing it but will be very rewarding in the end. I think you'll like it and there's a lot more detail and humour added in. I think too if you're a neutral then you'll most likely prefer reading my 2nd book... that's if you like dry humour!

Here's 10 humorous quotes to keep you amused and these are handpicked from only 3 of the 15 chapters!

"My facial expressions didn't help either. I could have been singing a very up-tempo song but going by my face you'd think I was singing a ballad at a funeral"

"I love numbers but not the number 4"

"Being given ice cream with a spoon already in the bowl was a nightmare"

"Using my fingers as a gun with the thumb acting as a trigger shouting "bang, you're dead" didn't really get my adrenaline going much"

"A little bit of spit flew out of someone's straw when they were messing about and onto Ronald McDonald in the center of my birthday cake"

"It took me a while to grasp but I went the other way and started doing it all the time like a nodding dog. I was lucky I didn't get whiplash"

"If they're wearing a fluffy animal print coat then it might sway me"

"I made a point of shaking hands and then craftily as I saw down I might rub my hand on the chair or my trouser leg"

"People don't know if I'm being serious or not and that's part of the humour. It gives me that get out of jail card if I say something inappropriate"

"At least my forehead won't need ironing out in 20 years time unless I have a major mid-life crisis"

To help get word about about my new book, I'm giving all kindle users a chance to purchase my first book "A New ME" from the 3rd January to the 7th January for FREE. It's available in ALL countries too!

http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?s=books&ie=UTF8&qid=1420158128&sr=1-1&keywords=a+new+me

Above is the UK link.

http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_2?ie=UTF8&qid=1420158234&sr=8-2&keywords=a+new+me

Above is the US link.

Oh, and don't forget to share and leave a review!

Thank you.... 3rd January everyone!

Happy New Year!

Barry x

'DOMS' - A bad day...

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

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...

• 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.

Ok, so they're the main points. I won't mention any negativity in this post as I want it to remain positive which will hopefully reflect on anyone reading this!

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.

New Years Targets:

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

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

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

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