I'd probably better start writing!

Well I've had this thing set up for an absolute age but haven't ever got round to writing in it. Today's probably a good time to start.

Today isn't such a bad day really. It's actually pretty good. I say 'good' in a relative sense- to you, a good day might be running around a theme park, or going to the gym, going out for lunch and then seeing friends all evening. For me a good day is being able to walk a couple of meters (with crutches or a walking frame) to the bathroom next to my room, brushing my teeth- all under the supervision of my carers who come in three times a day, and being able to go on my laptop whilst lying in bed. At first I'd get so frustrated at how a 'good' day might not be seen as 'good' at all but I've learnt to go with it. It'll be different one day, hopefully before too long.

I was recently in hospital for three weeks and it was the most depressing three weeks ever. The problem with ME is that it's completely invisible, I mean you don't even look ill with it, so I think it's quite hard for people to really take you seriously. So I think some of the staff thought I could do a lot more than I could and I was told on many occasions that it was a 'confidence issue' and that I just had to put 'mind over matter'. All very easy for them to say. It felt like some of them thought I was putting all this on- I mean why would anyone ever make something like this up? It seemed they thought that I wasn't trying hard enough to get better, that I

was just being lazy- even that I didn't want to get better. It turned into a bit of a battle really, trying to justify myself and that was exhausting enough. I'm not really saying it was their fault. ME is such a misunderstood condition that people are bound to have their views on it and I suppose it must be very difficult to keep those views quiet. But as the one suffering I know that I was doing my absolute best. When I said I couldn't do something, it was literally because I really didn't feel that my body was going to let me. And the thing about ME too is that it's a very unforgiving illness- you push it that little bit too far and for days afterwards you go through hell. So it's all very well to tell me to push myself and if I do it to tell me that, see, I can do it and that it's all about confidence, but until you have felt that extreme payback after doing something then you can't really understand the true effects of what you're saying.

The other thing is that quite often I think it's seen as a psychological condition, supposedly because physically you don't look ill (even though it's accepted by the World Health Organisation as a physical, neurological illness). All I will say is that anyone who says it's psychological clearly hasn't had it themselves. I'm not depressed, I'm actually pretty happy considering. A psychiatrist saw me in hospital and said that psychologically there was absolutely nothing wrong with me and that my symptoms were all physical. So doesn't that say it all really, if a psychiatrist is telling me that?

Don't get me wrong, I had some wonderful moments in hospital. I made some really good friends on the ward, all a lot older than me- I kind of became the 'baby' of the ward (probably not helped by my baby pink wheelchair). I bonded particularly well with one nurse, Ali; she treated me not like I was being difficult but like a person who was really worth her time. When you're in hospital for such a long time and you have nurses doing literally everything, and I mean everything, for you, you can't help but become attached to someone who you particularly get on with. Anyway, Ali was wonderful. She took a lot of time to chat to me when I was upset, particularly one night when I spent a good half an hour bawling my eyes out to her. But she forgot the ME too and saw me as a real person. She asked me about the photos I had with me. She gave me wheelchair races up and down the ward. Some of the other nurses would grab any old pair of pyjamas for me to change into but she'd get them all out, lay them on my bed and help me choose a pair. When I managed to walk three meters she didn't say 'see, you can do it', but instead told me that she was really proud of me. I can especially remember her waking me up after she'd come back from a few days leave, and just hearing 'morning Louise, my little love, are you going to wake up and see who it is?' It's those kinds of people that really spur me on to get better, not those who tell me it's just confidence and that I should think about the effect on everyone else around me. Because I really can't help it and believe me, NOBODY would choose to be like this.

I've been lucky to have the most fantastic friends and the best boyfriend in the world, Rob. They've just shown so much love towards me; they've forgotten the ME and just cheered me up. Below is a photo of my best friend Alice and me. Oh, and by the way the sunglasses aren't some form of fashion statement- I'm very sensitive to light at the moment. Anyway, Alice and her fiancée Darren came to visit me one Saturday- I think I'd been there about a week or so. I'd meant to have been going to her 23rd birthday party, a princess and fairies evening on the Thursday night, but obviously I'd been in hospital. So I got Rob to bring me in a wand, took a photo with it and sent it to her to tell her that I was there in spirit. She then turned up with another wand, a tiara, a gorgeous card she'd made and that everyone had signed and a party bag which had the most amazing cake in it! And that to me meant the world.

There was also the time that Rob brought me in a Chinese takeaway. That cheered me up massively. And he brought me a pizza a few nights later (suggested by Ali) and got pounced on as he walked through the ward by all the other patients who would have given their right arm for a takeaway pizza. So there were some good times in hospital too; that's what you have to remember about having ME generally really, however bad it gets there are always good times.

Anyway, that's enough rambling from me. I'll wear myself out if I'm not careful! But it's pretty miserable outside, so I suppose in some ways I'm glad I'm stuck in bed- at least it's nice and warm.