I was waiting for an appointment today in hospital for the cardiologist and ended up talking to some of the other people who were in the waiting area. They were all saying that they weren’t used to being ill until they got ill with the reason they were there and it made me realise that I have had ME so long I’ve got used to being ill and don’t remember what it’s like really to not be ill.
I don’t know how long any of you have been ill for but as it’s been eleven years for me now it’s been quite a bit of my life as I’m 26. Before I was ill I was in school and working on my GCSEs so I didn’t really have a proper grown up life without being ill. I haven’t had a job because I’ve been too ill since before I could legally work (apart from a weekend job I think) and I’ve never been able to drive as I ended up managing a few driving lessons before I was too tired and didn’t actually feel safe to drive with how tired it made me and my concentration issues.
This kind of sounds like it’s a bit of a pity post but it’s not, I suppose the best way to describe how it feels to me is the saying about how you can’t miss what you’ve never had, or words to that effect anyway. It’s not completely accurate as I do wish I had more independence and that I was able to just drive off somewhere or not have to plan everything I do but I don’t think it’s as big a hole in my life to not drive as for someone who could drive and can’t any more. I’ve never been able to do it so I don’t know the feeling of being able to drive myself without someone telling me what to do so I don’t miss it.
The way they were talking in the waiting room made me realise that, although I don’t have any real social life, I probably don’t have much of the life that a normal 26 year old would expect to have but as I don’t really remember it being any different it doesn’t bother me as much. I think that most of the time it affects my parents more than it does me. I’ve always had to listen to my body and know when I can’t do things and accept the fact that I may have to cancel fairly last minute.
I don’t think that people who don’t have a long term illness understand, and there’s no reason they should really, that you have to accept it. You can keep fighting it, find new things to try and help or ways to push yourself without going overboard, but you can’t just ignore when your body is telling you that you need a rest. I think a lot of healthy people do end up pushing through things that we can’t, like a virus or a cold that would make them feel a bit groggy or slow, and think that we can too.
Most people never expect to suddenly get ill, whether the health issue is visible or invisible, and when it’s something that affects your physical ability to do things and the way your body works it takes a while to learn to listen to things that you’d have ignored before. I think it’s a bit of shock if it comes on suddenly like ME does (at least I think it has for most people, especially if it’s after a virus or illness), especially if you’re younger like a teenager. If the illness lasts a while you learn when symptoms mean you have to stop or slow down. After a while it just sort of becomes a way of life, I’ve ended up finding I don’t even think about it any more, it’s just the way it is.
I suppose one time that I realised this in the past was when I had to fill out a form, I think it was for the census, and there was a question about if you had a disability how much it affected your life and it had the categories with words like ‘affects my life a little/a lot/all the time’ sort of thing and by that time I’d been ill for a while and I almost thought it was a little until my parents said about all the things I couldn’t do and it ended up being one of them a lot further along the scale. I tend to find that forms like that remind me how much I can’t do, which is a bit depressing when it comes to actually doing the forms, but does end up motivating me to do more and see if next time I do it I can be the next step on the scale.
Overall I guess this post was meant to be about how we end up getting used to being ill, listening to our bodies and knowing that we just can’t do what we used to be able to. It does take a while to adjust and I’ve probably said this a few times in various posts but I thought I’d make a post about it today as I ended up thinking about it after the conversation. I think the fact that I’ve been a lot worse than I am now means I sort of don’t see it being as affecting my life as much as it does, have any of you found that when you’ve improved health wise?
This wasn’t my planned post, I just ended up thinking about it so thought I’d do a post. It got a bit rambly and I’m not sure how much of it made sense but I’m going to post it anyway. Have any of you found that you sort of get used to being ill? Like the things you do now without thinking that took a bit of getting used to to start with.