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 anyawillowfan@yahoo.co.uk and I'll be happy to answer as best I can.

M.E./C.F.S. Awareness Day

Today is M.E./C.F.S. Awareness Day.  I know I was going to explain to you all what it is like to live with this disability but really don't have any idea where to start.  So I'm opening it up to you - the readers.  Please leave any questions you want to have answered and on Friday I'll do my best to give you my answers.  They will be personal and only of my opinion so don't be surprised if my answers don't match other experiences that you have read about - everyone is different.  So please ask away.

Sunday Shout Out - MEAW

Usually I use the Sunday Shout Out to point you in the direction of a blog I read and enjoy.   This week will be slightly different as it is M.E. Awareness Week.  A lot of you know that this is a disability I have lived with for quite a long time and I often mention it in my blog.  However, I am also aware that I haven't really explained what M.E. is.  So later this week I plan to write a post about how M.E. has effected me.  But for today I am leaving some links to M.E. charities that are certainly worth a look if you want to know more about this disability. 
AYME (Association of Young People with M.E.) is the charity that I've found most useful, their services are for  sufferers under 25 - they have given me comfort and contact with other sufferers which has proved invaluable.
The M.E. Association I haven't had a lot of experience with this charity but their website is very useful if you are looking for information about M.E.
And for any sufferers or carers who may come across my blog: FAME (Fibromyalgia And M.E.) is an open forum where you can talk about anything with other sufferers.

P.S.  M.E. stands for Myalgic Encelopathy which literally translates into muscle and brain disease.  It is now known in the medical world as Chronic Fatigue Syndrome but M.E. is still the more common term with sufferers.  There is no known cure and it is uncertain what causes this disability as there doesn't appear to be any common factors in sufferers.

What Would the Doctor Do?

The other day I was wishing I could think like the Doctor - there is something about the quickness and intelligence with which he thinks, the way he states all aspects of the problem then attacks each point until he has narrowed down the answer.  Wouldn't it be awesome if people could really think the way he does?  And then I realised that what I am actually impressed with is the writing.  The way the Doctor thinks and speaks is a product of the creators and writers and actors.  In thinking what would the Doctor do I had forgotten that he is a character.  I mean, I know he is fictional.

But the fact that I think of him as real is a tribute to the writers.  And I think too often we forget about the writers, especially in television and film.  The better the writing the less we notice it which is how it's supposed to be.  But we shouldn't forget where it comes from.  Someone has created the worlds, the situations and the answers as well as putting the words into the character's mouths and that while I may physically be able to do that I can only hope that one day my writing will speak to someone so directly that they forget it was written.  That is my dream.  Not to be forgotten.  But to have my work appreciated so much that I blend into the background and therefore whatever message is in my work will be received without interruption from me.  What does being great at what you do mean to you?

The 365 Project

You may remember me mentioning a few times that I was trying the 365 photography project.  I haven't taken a photo in almost a month.  The reason I haven't told you is I wasn't sure if I was really giving it up or if I would keep going after a few days.  But it has become apparant that I have officially given up.  I am not upset about it, I have learnt to take my camera with me everywhere - you never know what you might see.  And it has made me notice the world around me.  But it has become clear that I am not a photographer.  Surprisingly this doesn't worry me, because I gave it a chance.  I didn't write it off before trying it so I am happy to admit that that is not my forte and I can use my new attentiveness in my writing to bring out the worlds I am creating.

Sunday Shout Out

Only a few days ago I was directed to Tawna Fenske's blog, specifically for her post on her writing method.  Yes, this is primarily a writing blog (sorry to everyone who aren't writers and have no interest at all in the writer's mind, but if you know me at all, you know it's to be expected).  Anyway, so I only found the blog a few days ago and yet I have already spent hours wandering around it and soaking up all her enthusiasm and great advice.  Seriously - I'm not bored of it yet!  This to me means it is definitely worth having a snoop and even if you aren't a writer you might still find something that appeals to you.

The Sound of Blogs

It has never really occurred to me how we hear the written word before.  What I mean is, when I read words off a page I hear them in my head, as if someone is talking to me.  This happens particularly with blogs as everyone has such a unique voice and so you all become characters in my head.  That was until yesterday when someone posted a youtube video where their voice was an overvoice (so I couldn't see them) and I realised that I didn't really hear the bloggers.  I hear their words in my voice (well, the sound of my voice anyway) - so therefore every blog I read is English, Female, Early Twenties, you see where I'm going with this.

So I began to wonder how you hear my voice when you are reading this and if it becomes across as completely different than how it sounds in my head (which I'm now beginning to realise that it probably sounds nothing like me in your head).  So how do I sound?  Who do you see when you read my words? (This is mainly aimed at those of you who don't know me or not well, eg. Kess, your voice in your blog is a lot more confident than when I've talked to you in rl, so feel free to pass your judgement on me)