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

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!
 

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!!!

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

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






 

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/

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