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".

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!".

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.

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.

Next up is Cari with her blog on the "Heal Click" website.

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:

Next up is Leigh with "a Path Through the Valley". 

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: 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.".

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


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"

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"

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"

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"

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"

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 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...



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.


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="
" target="blank">
<img src=""/>

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:
I hope that collecting all the recommendations in one place will help each of us to find and explore new blogs.



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

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! ;)

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

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

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

Monday, 3 February 2014

M.E. - A wasted day: What about my daily tasks?!

Good evening...

I type this as I'm listening to the end of the Manchester City v Chelsea game on the radio!

So, as the title says... A wasted day! Sound familiar?!

I got off to a decent start, by that I mean I was out of bed before 10am with my breakfast...

The time I tend to need a lie down most is shortly after my breakfast so that's what happened...

I woke up at around 2.30pm and had my lunch at 3pm - 2 hours later than I had planned!

After then, another quick lie down followed by a bit of Prime Suspect!

I have a mild form as Asperger Syndrome meaning I am not content unless I have my daily tasks done... all when added up are doable with lots of pacing but realistically too much for someone with M.E. to do.

I like to have my meals at roughly the same time each day. I eat 5 times a day (trying to bulk up a bit after losing some weight). 1st meal starting at 10am and last meal at 11pm.

Before 2 of these lesser meals, I like to have my workout spread out into 2 parts though my body isn't always up to this.

I like to do my vocal/breathing workout, a little bit of piano and oh, I have some Theology coursework to do (this rarely gets done if I'm honest).

I'm obviously being too hard on myself but there are many emotions involved here.

Contentment when my tasks aren't done. I have many things in life I want to achieve, if I sit around all day then how am I going to progress?!

Depression - Ok, I use this term lightly here... A better phrase would be "fed up". This occurs when my tasks aren't done!

Obsession - well I can't help this, it's one of Autism's finest traits... At least I'm obsessing over the right things! Or am I?

In my situation, out the top of my head these 3 emotions are probably the most important regarding my daily tasks. If you look at the 3, they all contradict each other to an extent?

Maybe I'm fighting a losing battle but at least I'm fighting... with caution!

Most importantly I listen to my body, only my body can tell me how each day is going to pan out.

Hope you've all had a lovely day x

Sunday, 2 February 2014

M.E. - Who ever though that attending church would be such hard work?!

Hello all...

Continuing from the title of this post... I've done nothing!

Well, that isn't completely true... I made it to church this morning, the usual problems with parking the car meant I had a few minutes walk from my car to church. To the average person, this is no biggy... but when you have M.E. you have to think about:

1. Getting up early is already a killer, typically my worst time of day.
2. Forget a shower, it doesn't even get considered before church anymore! The evening before if I have the energy.
3. Making my breakfast.
4. Brushing my teeth (this isn't including the trips up and down stairs).
5. Stress about leaving my glasses or my walking stick in the house because I'm too forgetful!
6. Over 10 minutes driving.
7. Short walk to church.

As you can see, already there are 6 things I have to take into consideration before even walking from my car to church.

By time I arrive at church, I sit upstairs as I'm late (my own fault but the earlier I'm up, the worse I feel). That's another flight of stairs taken into consideration. Now it's time to stand up for a hymn... No chance, I'm aching all over and my brain fog is so bad I don't know if I can even keep my balance.

Next up, the sermon... Now I can listen and take it all in... Wrong! If you asked me now what the sermon was about this morning, I'd have to be honest and say there's absolutely nothing I can remember. Is that because I'm not interested? Of course not, why am I there in the 1st place?! When brain fog is bad, nothing goes in and I mean NOTHING! My sensitivity to light meant I spent half of the service with my eyes closed to try and get some concentration.

After the last hymn, people often stay for refreshments. I went straight home. I feel extremely anti-social but what can I do? Stay and make myself more ill?

Should I feel guilty? The answer is NO but my answer is YES!

Why do I feel guilty? Well, to start with I'm a devout Christian, I truly don't believe I'd be here without my faith. Everyone has been great to me at church. I don't want people to think I'm anti-social!

Why shouldn't I feel guilty? Easy... because I have M.E. Is that a cop out like many see it? Absolutely not, no-one has said anything negative to me about my illness at church. Paranoia certainly kicks in, generally it's very hit and miss whether the next person you come across will be understanding of your illness or not.

Anyway... Needless to say the rest of my day has been non-productive - no naps but no production!

Here's to hoping we all get off to a good start this coming week! x

Saturday, 1 February 2014

M.E. - "One step forward, four steps back!"


A quick update before I go to bed... I managed to stay up for 12 hours without going to sleep in between though I have had a couple of lie downs!

As we speak, I'm very tired and my legs are very achy and my brain is functioning pretty slow...

I'm sure most of you will relate to me when I say this.... Regarding each day - There has never been a truer saying than "One step forward, two steps back" although in my case it tends to be "One step forward, four steps back!"

When we have a "good" day we tend to overdo it due to being so excited that we can actually function properly to an extent. In fact it's probably the adrenaline that the excitement brings on that creates payback!

It's a very difficult situation, there are things that "have" to be done despite how good or bad you might feel and especially at a young age you feel like there's so much to do that you might not get the chance to do again...

A bad habit of mines tends to be leaving all my tasks until evening! I genuinely feel unable to do most of these tasks during morning/afternoon - in fact, morning doesn't really exist for me anymore! There's a pattern that has evolved: If I get up before 10am then my fatigue/aches is worse throughout the day. Unfortunately it's not always possible to stay in bed till 10am... I really hate it if I'm honest, I was always an early bird, I love the idea of having a productive morning going into a more relaxing afternoon/evening.

Anyway - I'm rabbiting on and I need some sleep!

Church in the morning... It pains me to say this but I've got to the point where I dread church, not because I dislike it, I'm a devout Christian. The reason I have come to dread Sunday morning is because it involves me getting up earlier, socializing with bad brain fog/aches and by afternoon I have to lie down and next thing I know, it's evening!

Hope you're all having a better weekend than me! ;)