To push or not to push?

I've set myself a goal. Well, actually, maybe not a goal. It's more of a definite statement. I will be spending Christmas Day downstairs.

It might sound a bit trivial really but it's really important to me. The best Christmas present for me will be doing something that's completely normal; being with everyone else at Christmas, not stuck in my bed like every other day. I know full well that there's going to be no easy way of getting down there, considering that the only way I've got down and up so far is to be carried by an ambulance crew! I've inevitably had a relapse from the drama of the pain clinic and collapsing in the week. I can stand for about fifty seconds a day supported if I spread it out over the day. However I don't care if I have to be dragged down and up those stairs; I am definitely going down there! The photo is of me last Christmas when I wasn't bed bound, I wasn't even housebound and I had a really good Christmas. I'm determined that I'm going to have just as good a Christmas this year. I'm going to fight very hard for it. But in order to get downstairs, I'm going to really have to pace myself and not do too much in the run up to the big day. And that's going to be the hardest part of it.

As an ME sufferer you have to fight. There are no two ways about it unfortunately. First of all there's the most obvious; you have to fight to get better. You have to try and fight the hell that is going on inside your body. You have to fight through all the low moments that you may have when you realise just how much you've lost (the saying 'you don't know what you've got till it's gone' is definitely a very true one indeed). You have to fight to focus on not what you've lost, but also everything that you still have and have possibly even gained. I mean, I've made a lot of new friends from going through this. AYME is just fantastic. However, you also have to fight to be heard. You have to fight to be believed. You have to fight to be understood. This is something that I'm experiencing right now, and it's nobody I'm pointing a finger at in particular. It's just a build up of experiences recently that have made me feel the way I am.

There is a big problem with ME and disbelief. Disbelief that ME is a physical illness, or that you even have it at all, and disbelief that you are trying your very best to get better. Again, I think it all comes down to the fact that it's a completely invisible illness. It feels a lot like there is a massive focus on pushing yourself to your absolute limit and not leaving yourself with any energy for your body to heal itself. The problem is, I find, that if you try and explain that you can't do something, that you really can't push yourself, people see that as 'you don't want to get better'. It's heartbreaking really, because I know I am trying my absolute best but it seems to be going unnoticed. Not by everyone, as I've said before Rob and my friends are truly amazing. But there's the guidance from the doctors, some of those nurses in hospital (that, let's just remember, don't have ME themselves) who think that to get better you just need to exercise more. The thing about ME is that you get payback, as I've mentioned in another post. Pushing yourself too far brings on that payback; the physio and the ME clinic both emphasised to me how important it is to stick within your energy levels. Because if you don't, you make yourself worse and then you don't have the energy for things that you want to do like go downstairs for Christmas. But it feels like by listening to your body you're being awkward to everyone else, you're making a fuss and not wanting to get better. And when you say you've reached your limit, or that you can't keep forcing yourself beyond what you can do, or that you can't do as much today as you did yesterday, nobody is listening.

One reason why I got on so well with Ali (my favourite nurse in hospital) was that she let me do things in my own time and she let me tell her when I'd had enough. She knew I was trying my best, it certainly seemed that way anyway, and she didn't rush me to do things either. She understood that I needed to save energy just for things like eating and letting my body heal itself. She let me save energy for things I enjoyed like visitors and going to the cafe for a cup of tea. And she acknowledged that I was trying really hard too and actually made me feel like I'd achieved something! She listened to the goals that the physio had set me, unlike some of the other nurses; I was only supposed to be sat up for thirty minutes at a time, but to make me push myself they left me sat up for hours! So inevitably that made me feel a LOT worse; if I'd have been allowed to keep within those goals and my energy levels then maybe I would have managed to walk a bit further the next day or had a bit more energy. I don't think they were doing it to be mean at all, but the point I'm trying to make from all this is that there's such a big lack of knowledge about ME in the medical profession and that makes it really difficult for those of us with it. I know that they were just doing what they'd been taught, what they felt their job was to do, but it felt like a lot of people thought my problem was psychological and that by pushing myself I was 'getting over it'. And I think that attitude has lasted. People are telling me that they are going to be hard on me and make me do things; it almost feels like I'm being punished for being ill!

I've been told many times, and I know it's true, that if you don't do anything then your muscles will go to waste. I completely get that. But at the same time, I think people forget that I have got ME and that my energy levels are in VERY short supply. And a lot of my muscle weakness is caused by the ME in the first place; pushing myself beyond my limits is only going to make that worse and then I'll never get anywhere! And that's the thing that I've tried to keep explaining but nobody seems to want to hear it.

The one thing I've found really helps me though is talking to other ME sufferers because a lot of them feel the same as I do. And it's nice to be able to support others too, not just be the one being supported all the time. I know this seems a bit of a negative post but there are some real positives that are coming from all this. Some that I'm really hanging on to are those really special friendships with people from AYME and of course my other friends too. I know that all this is going to make me a much stronger person at the end of it and that can only be a good thing! And I just want to make other people aware of what it's like so that for someone in the future, hopefully, peoples' attitudes towards ME might be a bit different. As they say, every cloud has a silver lining!

Anyway, now I've got that one off my chest it's time to get excited about Christmas again. I've got a lot of presents to wrap; it's too much for me to do them all myself so Rob's staying tonight to give me a hand (although I'm not sure if he knows that bit yet)! I'm slightly worried though, as I ordered Rob's present ages ago but it still hasn't arrived... as long as it gets here by Christmas, I don't mind! I've been having A LOT of fun on the iPad too. It's brilliant. I think I DEFINITELY know what I'd like for Christmas now!