This may seem like an odd way of explaining it, but hopefully it will make sense by the end of the post. As the theme for ME Awareness Week, at least in some places, is the idea of understanding what it’s like to have ME I thought I’d do a post of how it feels like, or rather this post is sort of more how it felt like to start with, this feeling does sort of go away after a while but it still sometimes sneaks up on me again.
I’m not sure how much sense this post will actually make, my brain is rather fuzzy, and it’s definitely not the only aspect of my life with ME, I might do a post on something else later in the week as I did think of including more aspects but it got a bit long and like a wall of text, so this is just the parallel worlds, two lives kind of thoughts I’ve had. Also I will say before I start, these are just my experiences, obviously it won’t be the same for everyone, maybe no one else feels like this at all but I think at least some people might be able to agree with me or know what I mean with this post.
It’s weird, when I was first ill I wasn’t really sure what it was that was wrong, which is obviously a bit scary when suddenly you can’t do anything that you could before and lots of people thought it was either just me being over the top after being ill and not wanting to go back to school or that I wasn’t actually feeling as bad as I was. As I was so ill I didn’t really have the energy or concentration to think of much, the first few years are mainly a blur of staying in my room broken up with events that I went to that I was probably too ill to go to and I can’t really remember properly anyway like seeing bands live or school events.
After that time it was almost like waking up and finding I was someone else, but at the same time I was also the old me, like I was two people at once, which does sound odd but might make sense if you’ve ever been ill for a while and you start to recover a bit, like with the flu, and you want to be able to do what you normally can and in your head you still can but in reality you can’t.
It’s like the old me is a dream, there were all these things that I wanted to do, all these plans that I had and in my head I can still do them. In my head, or possibly a parallel world, I got my GCSEs and A levels, I went to university and I graduated and got a normal job, even a boring one, and can go out in the evening if I want to without having to plan around it, without having to rest before and after.
Then there’s the real me, the me who can’t go out most days because I don’t have the energy and, even if I do have the energy, the light headedness, poor balance and dizziness make it so unpleasant to go out and draining in themselves that I don’t because I just don’t want to have to put up with that or the thing itself isn’t worth it. The real me who didn’t get to go to a bricks and mortar university, didn’t get a degree in the four years or get to make new friends in another part of the country.
It’s like there are these two lives, very different lives, and sometimes it’s hard not to dwell on the other life, the one that I probably would have had. It’s the thought of ‘what if’ which I know everyone gets whenever there’s a big turning point in your life. Sometimes they’re things you can control, other times they aren’t. Sometimes these are things that make an impact on one aspect of your life, like choosing to apply for a job, what if you’d got the one you applied for but you failed in the interview. They do affect your life, and the two branches at that point could be very different with the knock on effect, but often that one point is forgotten about or it pops up every now and again because you’re still the person you were before, with ME, and any chronic illness I guess, you don’t have your life returning to some kind of normal afterwards. Or I guess you do but your normal is shifted a long way away from what the average person in your social group/job/age/country would consider normal and it all happens very quickly so you don’t really get the chance to get used to it gradually, it just happens. And it doesn’t stop happening, it’s there every day and it somehow seems to find new ways to change your life, whether it’s a new food intolerance, a new symptom that suddenly pops up after years of not having it or getting a bit over confident in what you can do and being knocked back months because you feel good enough want to forget and wanted to be able to live this ‘other life’ where there were less consequences on your health after doing something that you wouldn’t have had to worry about without the chronic illness.
On the other hand, the old me, if I hadn’t got ME, would have gone to university, probably studied for graphic design and would most likely be struggling to get a job. Although now I would do anything to have any job at all I don’t think I would have the same opinion if I hadn’t been ill and not be physically able to do anything. The old me probably wouldn’t have got a degree in anything computer related, I wouldn’t have volunteered and be able to work on an online magazine because I wouldn’t have had the qualification or know how to do it. I wouldn’t have made the friends I have online, probably wouldn’t have talked to people all over the world, at least as much as I do now anyway, and I doubt I would have started this blog or selling my jewellery.
I guess at the end of the day everyone has big events that change your life, I’m not saying that what anyone else has had happen to them is any worse. It’s more that a lot of people who I talk to online or know in real life, especially ones who have known be a while, almost don’t seem to realise that having a chronic illness is one of these events and we do have lives that we wanted, dreams and plans that were put on hold, or completely destroyed, because of this illness.
At times it almost feels like the real life is the dream, like you’ll wake up and suddenly you can do anything. If anyone has seen Red Dwarf it’s a bit like the episode where they think they’ve been playing a game called Red Dwarf and everything that had happened in their lives was in the game rather than reality. A slightly odd reference but sometimes it’s like that, at least to me.
I know this only covers a small aspect of life with ME and it’s probably not very well put together or anything, partly because I’m going to submit this before I can change my mind again about posting it at all. I post about having ME and have probably done posts about how it affects certain aspects of my life and how that makes me feel at times but it feels a bit odd just focussing a whole post on how it makes you feel, especially as there are so many aspects to it, so many things in my everyday life that are affected and it’s been twelve years so that’s quite a few experiences to write about.
At the end of this ME Awareness Week I plan on doing a post with links to fellow ME bloggers, I think it’d be good to bring awareness to people blogging with it as well as the illness itself. I have done a post about it here but if you want me to include your blog in it then please either leave a comment or email me at firstname.lastname@example.org