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Friday 14 May 2010

My M.E./C.F.S Experiences

This post is purely from my point of view and about my personal experiences.

Thanks for the questions girls.  I first got M.E/C.F.S when I was about 15 though I am hazy on when exactly.  It started with me catching a virus and then it just seemed like I never recovered from it.  Luckily I had a really good doctor who knew about and understood M.E. and so after a few months she suggested I might have it.  There is no way of determining whether you have M.E. or not other than eliminating other possibilities so I had to have quite a few blood tests for other illnesses.  Also, because of the nature of M.E. the sufferer has to have had the symptoms for at least 6 months before it can be classified as M.E.

As for the symptoms.  There are a lot of them and they vary for every sufferer.  The main symptom that every sufferer has is fatigue.  A lot of people believe this is simply tiredness but it is so much worse than that.  It's beyond exhaustion and I feel it almost all of the time.  It's as if all my energy has been sucked out of me and I feel like a useless lump as moving is very difficult, not to mention painful.  Other symptoms that I suffer from are headaches/migraines which I have almost all the time, muscle pain particularly in the legs and sometimes in my arms, insomnia, sensitivity to light and sound.  When I am particularly bad the sensitivity causes a lot of problems as I jump at the slightest sound and if more than one person is talking at once I have to cover my ears because it becomes deafening to me.  I also have depression which may or may not be connected to the M.E. but obviously it gets worse as my M.E. gets worse due to the fact that I lose hope that I will ever be able to do anything I want to again.  I haven't had all these symptoms all the time as M.E. is a circular disability meaning that it gets worse for a period of time then gets better, sometimes to the point where I can forget I have it.  Of course this is a problem as the symptoms get worse if you overdo it - either physically or mentally - so if I'm feeling well my instinct is to make the most of it but this can bring it back.  So it never really goes and I've had to learn to pace myself and not overdo it which I'm still learning to do.

As for how it effects my life - when I first got it I was doing my GCSE's but could only go to school part time so would go for a few hours everyday as when I tried to go full time I made myself very ill so I was unable to go to school at all.  Now I am at uni and most of the time I am able to go to all the classes as there are only a few a week, however, when I am feeling particularly bad I have to miss the class if I want to get any work done.  In the past few months it has been particularly bad to the point that I was only managing one class a week as getting there and having to focus for a few hours totally drained me so I would need a couple of days to recover from it.  Last year (my first year) went well and I didn't have many problems and was able to have a social life.  This year I have managed to go out clubbing twice and I didn't really enjoy it as I wasn't able to dance which is what I love.  I also had to quit dance due to my M.E.  So now all my time is pretty much spent focusing on my uni work as I can't cope with a social life as well.

I am very lucky as I have a very understanding family who have supported me and never thought that I was making it up so they don't push me to do more than I can.  And I am also very grateful to my boyfriend as he is also very understanding and often helps me when I am particularly bad by helping me to the toilet, cooking my dinner etc as these things can be very difficult when my muscles feel like they are about to collapse under me.  I think that the main effect M.E. has had on my life is friendships.  When I was at high school a lot of my friends believed I was just being lazy (I am no longer friends with any of them) and I haven't been able to keep in contact with many friends that I made last year as I just don't have the energy to go out.  Some of them have tried to stay in contact but it has been very difficult for me as they always seem to want me to go out places, and the more times I've said I can't, the less I've been asked.  It can sometimes feel very lonely as I am stuck in my house for weeks so the only way I see anyone other than my boyfriend is if they come to me which, understandable, not many people have the time to do as they all have their own lives.

I hope this has answered all your questions - if you find you don't understand something or want to ask me something I haven't covered, please leave a message or email me at and I'll be happy to answer as best I can.


Ashley said...

Thanks for answering the questions. That was a really insightful perspective into a disease that I have no experience with--I've never met anyone before with it. Sorry about the hardships it causes you. I hope that it will make you a stronger person in the long run, and I'm glad you have such a supportive family and boyfriend.

Kess said...

You are so brave, Bethany :) And I really mean that. This is an awesome post! I know of a couple of people who suffer from M.E. but not to the extent that you do. I know life can be a real struggle for you at times, but you've made a real effort against all odds to make something of it!

Unknown said...

Thank you so much for your supportive comments - honestly I don't have M.E. that bad (I'm about 60% on the scale, with 0% being the worst) in comparison to a lot of people I know who have it. But often I feel that that is the problem - because I look 'fine' from the outside and am able to walk around most of the time, people find it difficult to believe there is anything wrong at all (or perhaps they don't want to know).