Well, its a lovely day outside today, and i had planned to go for a drive - however, i am feeling a little unsteady today so i probably wont end up going. I got up early this morning (well, 9am) to make breakfast for my boyfriend, who has since gone off to as stag do which involves a nigh on the lash, and a trip to Go Ape - a kind of assault course up in the trees! Rather him than me.

I suppose as noone who reads this blog will know any background info, i ought to give some - about how i came to have M.E. and what level i am at now. I am suspecting that noone will read it - i am sort of writing it that way; because if i thought anyone was, i would have been more positive! Anyway, my M.E. started in May 2008, when i got some strange virus that started off like flu. This progressed to muscle heaviness and weakness, some numbness, anxiety and of course extreme tiredness. I lost my strength really suddenly, and although the shakiness has improved considerably, it is still there and my muscles are completely soft, with no tone and i am tired all the time. I gave up work in September 2008; with my employer keeping my job open for 6 months wihout pay; which of course have long since expired.

I am now at the satge where i can only walk short distances. If i walk 40 metres i will feel exhausted, but not straightaway - about 2 hours later! I can do bit of housework - bits of cooking, small amounts of ironing etc with rests inbetween, but not a 'normal' amount by any means. On a good day i can drive a short distance. So, i am mostly housebound, unless someone can drive me and drop me right outside the destination.

The hardest thing has been accepting the imact this has had on my life. Before all this, i guess my life was 'to' perfect. I loved my jobas an instructional designer for a small company. I loved to skate and would go three times a week, plus an exercise class. I would go out with friends to pubs and bars, shopping on Saturdays. Now i have none of this. The most i do is have a friend over for a visit, or be driven to a friend's house. if i get out at usually it's for medical appointments. I find it difficult to stay positive in view of all that i have lost. Sometimes i feel like a ghost to my own life - especially when i get driven past places i used to go. I can see my shadowy figure walking on ahead of me. And i can't stop the thought: 'Why me?' which has to be the worst one of the many thoughts i have.

It is difficult to see someone else doing your job, see friends socialising. I keep in touch with people which provides a 'window' into my past life. It is really heartbreaking to look through.

I received a lovely email yesterday which actually gave me the support i was looking for - everything about understanding how it must have felt, and i have to say i felt somewhat better for reading it. Im still going through a mix of emotions; on one hand i am looking at the letters M.E. as evil letters that will overshadow my life. It only takes one website to start the tears off. On the other i am thinking that i no longer feel a 'fraud' for feeling the way that i feel. And i am now admitted to a community of people who have to fight this thing, and almost feel excited about trying to beat it. And if i do, ill be very proud. I will see life from both sides now; from a healthy person who has every opportunity to do and achieve whatever they wish, and now, as someone who looks at other people and wishes they knew how lucky they are to be 'normal'. I suppose that's not something everyone experiences. I hope, at least that because of this i will no longer be one of the people on Facebook who makes me cringe for complaining that the weather isnt quite good enough for skiing or that they have had to postpone a night out. That is how i used to be. I still wish none of this had ever happened and would still like to live in blissful ignorance - but now that i can't, i may as well make use of the experience.

I am wondering what it will be like to go to the support group - will it make me feel better or worse? I'll shelve the thought until i actually have to go. Right now i am waiting for my boyfriend to turn up and we will have a night in front of the telly and everything will seem ok just for an evening. Tomorrow i am hoping to go for a drive, just to get a free coloured glass from McDonalds....it's the little things! And i hope to visit my poorly Grandfather too. He is in a worse position than me. I need to remind myself that things could be worse and be there for others as well.

So, even though this is sort of ananymous, i find myself holding back a little. I think this is from my exerience of reading other blogs, which are far more gracious and accepting than mine. I'm afraid of spreading negativity everywhere, and i would like to think, that if there was one thing this illness can give me, it's a sense of pride that i can look back one day and say: 'Well, i handled that with diginity'. But i fear that with my attitude, it wont even afford me this. So where does that leave my misplaced and angry feelings? Maybe feeling unable to express them, except with my counsellor, is part of the problem. There is so much value these days, placed on the ability to put on a brave face, make the best of things and not complain. But who is it that places these demands on us? Those who don't have an illness like this, most likely. How can i be advised to accept something by people that wouldnt (or dont have to) accept it for themselves? And yet if i dont, and let myself be consumed with anger, jealousy, resentment, i am pressing my own self destruct button. I must be kinder to myself and others, and not waste my energy on stress that does noone any good. I am still perfecting that skill, and, believe me, it is a long way from perfection!

Yesterday, for the first time, i felt like i cried properly for what had happened. Don't get me wrong, i have cried far too many times before, but always with a sense of 'limbo'. Yesterday, something felt different - it was something i felt deep inside my chest, like a proper sense of physical release, that i hadn't felt before. For the first time i felt 'allowed' to feel the way i did, because there was a reason for it. So even though the diagnosis has brought fresh worries and compounded the idea that this might be here to stay for a while (or even longer), at least it gave me that.

I've was thinking a lot earlier about the idea of being 'forgotten', or in a sense 'out of sight, out of mind'; something that i've been acutely sensitive to, ever since this began. I suppose it is difficult to accept the normality of others' lives, while all this is going on in my own. There are few people that have really cared, some that have outright ignored, and several in between. I suppose i look for reassurance that at least some people try to understand what its like, even for a few seconds, as i know they have their own lives to lead. If i knew they were doing this, maybe i'd trust them not to forget me. If someone just said the simple words: 'That is absolutely horrible. I can completely understand why you're so scared', that would be enough. Sometimes, when people have asked me to explain the situation, i've tried to give examples of what i can and can't do. But somewhere along the line, either immediately or weeks later, they might say: 'But you can still go into town and go shopping can't you?' or 'Could you manage a day out somewhere?' which, as a result, makes me feel like ive not been heard. 'Of course i can't!' i want to snap back at them - but that wouldn't be allowed, now would it?! And this adds to the feeling of being completely alone with this. How can they understand if they can't be made to realise the facts? And if they don't realise the facts, they'll think i am coping and they'll think it's ok to forget.

Well i've dne my bit for the day. I've written my blog and i've cooked a meal myself and done some low level pottering. I should be grateful i can do this when there are some who can't, i'm aware of that much. So that's today...see you tomorrow!

The day after diagnosis

Well, i always said i wouln't be shocked or upset when i got my definite diagnosis of CFS; i knew i had it, everything points to it, but it was still somewhat of a blow. They told me what i expected to hear - there was a chance i could do well and recover or at least 'get my symptoms to a manageable level', but there were no promises, no guarantees. They told me in their typical matter of fact way, before i left the consultation room to digest the information, and they carried on with their presumably normal lives and careers. Bitter arent i? But i make no apology. I came here partly i suppose, to vent my feelings in a sort of anonymous way. Why for example are my studies now seemingly a waste of time because i cant work just like they can? Why are other people allowed holidays and trips while i sit day after day in front of daytime TV, in a life where cooking pasta and washing up become 'events'. I have spent hours congratulating others on their marriages, holidays, promotions - wishing this person and that person ' a lovely time'. Now i've had enough, and i am begining my blog with an unashamedly self-indulgent rant. But hopefully, even though this might not be admirable and a highlyingracious way of dealing with the illness, it might give a reflection as to how some (and not all of course) people with M.E. might feel.