You dont know the meaning of Tired !!

So I mentioned in my previous post that I had a condition called ME (Myalgic Encephalomytits) now I hear you say what is that? Some of you might know it as Chronic Fatigue Syndrome. But still I hear you ask what is the actual condition? Basically it means you are VERY tired, no EXHAUSTED most if not all of the time. The reason I changed tired to exhausted is because 99% of people say there tired and if I was to say that you wouldn't understand how truly tired I feel so exhausted would better fit this condition, but even then people just brush it away! But there is much more to constantly being exhausted that I needed to explain to everyone.

Now I have been diagnosed with this condition for over 2 years officially but if I look back I most probably have had this condition for just over 6 years, while deteriorating year on year to the point where I am now! I used to be able to play football 3 times a week, take on 2 friends at once at badminton without any problems, I was always on the go but over the years this started to slow down as I would find myself struggling to keep up until it got to point where the day after playing an hour of football it felt I had been hit by a bus! basically unable to move and struggle getting out of bed. So I hear you all saying that's a sign of getting old! well this started when I was around 25/26 so not old at all!

When I came to the doctors several years ago with how I was feeling the first thing he said to me was there is a few things that it could be, but one he wont test me for until all other ideas are exhausted (no pun intended) he didn't at the time tell me what this one thing could be just that its not very nice. If you hadn't guessed this one condition was ME! not me personally lol but Chronic Fatigue Syndrome (sorry tried to make light of it lol) anyway continuing on I was tested for Depression, eating disorders blood tests on blood tests for high this low that blah blah my head and arms hurt!!! Until finally it was diagnosed that I had this unknown condition called M.E!

So you can imagine myself thinking "what the fuck is he on about"!, so as per doctors guidelines on this subject he gave me a leaflet and I was told to sign up to the NHS ME Association program oh! also check out the NHS link for info on it!! Right so whats the fucking cure? to which I was told THERE IS NO KNOWN CURE! Yup you heard that right the condition I have has no fucking cure, I was then told it can last months, years or a life time, whats even better is the doctors.... hell no-one knows what causes this complete tool of a condition!

I still hear you ask "how are you affected by M.E! well there are many symptoms associated with M.E and different degrees of severity to which thankfully I am classed somewhere in the middle. I say Thankfully as the worst case I have seen is someone confined to a wheel chair due to lack of strength and energy to walk while needing to rest on several occasions throughout the day just to get by!! Now while I'm not as bad as this I still struggle......badly on occasions.

What again most people aren't aware of is that this condition isn't just about being tired so to speak there are other not just physical issues but mental issues too! For example I can get wiped out just by going up the stairs! Yes going up the stairs can get me to the point that I need to sit down and take a rest! Now there are good days and bad days. the stairs being in the middle of that. A bad day for me consists of not being able to get out of bed, while not spending all day in bed I can spend several hours longer than most, this isn't for want of trying to get up but the only way I can describe it is that my muscles feel heavy like lead weights, while my head is fuzzy and my eyes just don't want to open, almost as if I've been drugged. A good day could be that I just feel tired but not exhausted!

Whilst the fatigue is the biggest problem I have there are a few more noticeable issues that when coupled together really makes this a life changing condition! A common problem known to those with M.E is muscle and joint pain, to which I also get namely in the back (almost all the time) and my legs/knee joints (frequently). I also suffer from disordered sleep on occasions insomnia while this isn't as frequent as other issues this can be one of the worst as lack of sleep as most know is very draining. The next problem I suffer with is Short term memory loss which also couples with verbal pronunciation, meaning I sometimes struggle to speak out what I want to, then there's the gastric disturbances!! yup I shit a lot! but this also couples with the fact that I have a dietary condition known as Ceoliacs Disease (wheat & Gluten Allergy). A smaller random symptom which I get is sore throats !!!

Theirs one more problem that I suffer with that really is the one that upsets me the most out of all of the issues and that's the mood swings, I can just snap! I will be in a fine mood then all of a sudden without warning everything will fuck me off and ill be very agitated for no known reason what so ever, this means that I can cause arguments where not needed. But I must stress this is not an intentional thing it just happens and I cant explain why or how other than it does happen quite frequently. Only those with the condition can understand this. (So from this the picture I've just portrayed of myself is that I'm a miserable twat that cant speak properly, always in pain, spends most of the time taken a shit while falling asleep and forgetting to flush!!lol) Thing is you'd be forgiven for being right for thinking this as this is how I feel most of the time! Bar forgetting to flush !!!lol

Whats worse this condition isn't visible at first glance, hell its not noticeable at all!! I don't walk funny (unless I need a shit lol) I've no visible marks (other than tattoos) I don't froth at the mouth, so to look at me you would think there is nothing wrong and there in lies the problem, people see you as LAZY! not the fact I'm having to sit down to get some energy as that last walk up the stairs has wiped me out!! This is a common problem, everyone perceives you to be un-helpful when you decline to do something which leads to being classed as lazy.

Now I try do do as much as I can as I have a wife that needs me and 2 young kids that require my attention too, so take all of my above mentioned problems, the constant attention needed for the family not to mention a job (when I get one lol), its very physically and mentally draining to the point every so often I will just crash and need to just sleep in the middle of the day or stay in bed even longer to try and regenerate some energy.

The mental side of all of this is that your constantly thinking your useless as to do anything even remotely physical is going to have you needing to rest, I mean come on who wouldn't feel useless if they needed a rest after going up the fucking stairs!!! So with this in the back of your mind, every time someone asks of you, you start to get very de-motivated at doing things, as your turning down helping out what would be a simple job for fear of crashing. So now your becoming very un-motivated to do things or go anywhere as this all has a knock on effect, which means you put off social events or even wanting to go out into town as you know it will physically and mentally exhaust you. So then you start to become a recluse, but you cant as you have a wife and 2 kids that love you and want to spend time with you.

This is just a snippet of what it is like well for me anyways to live with this condition known as M.E, now when you see me I put on a brave face I've even been known to waffle on like there is nothing wrong, the joker of the crowd, but just be aware that once I have left your company and gone home I will most likely be crashing as I have for want of a better word physced myself up to try and cover up best my Embarrassing condition. Yes I see this condition as Embarrassing due to the constant need of feeling useless at not being able to do anything without getting warn out!

I don't want your sympathy, I would just like you all to be aware that I am not being blunt on occasions or un-helpful on others as there is a valid reason to why I act the way I do. So Its with this that I will now stop talking about it and lastly just send a huge thank you to those that have been supportive of me and especially a huge thank you to my lovely wife for being the rock that holds everything together.

Please feel free to leave any comments or if there is anything that you wish to know more about don't hesitate to ask.

Finally Here is a very good friends take on what M.E has done to him!

http://as-i-face-the-sun-i-cast-no-shadow.blogspot.co.uk/