Sometimes I forget who I am.
No, I don’t mean I hit my head and get amnesia. I’m talking about what a difference capitalising those two little letters can make; M E.
I was five and a half when I got a sore throat that turned in to something life changing. So naturally I would’ve changed quite a bit since then- chronic illness or no chronic illness- but I go up and down a lot, flares, relapses, good days, pyjama days… And that makes for a constant reminder of how it feels to have built something up (be it life in general or physical fitness) only to watch it fall away again. To loose a part of yourself you have worked so hard on.
When you spend a lot of time isolated and alone it often feels like you’re forgetting who you used to refer to as ‘me’ and then, when it comes to putting yourself back in to the real world with people you used to know, you find you’ve got nothing to say. You have forgotten who you are, the way you used to laugh, how easily you could fit in to a conversation with your friends. You need to learn these things again but learning can often be a long, drawn out process and you simply can’t find the energy or the time
I often feel like I am nothing, have noting, except a body full of illness and a future going nowhere. As with everybody else around you, you have a picture of yourself in your head. The way you imagine you are, what makes up ‘you’. Some times this interpretation is accurate some times… Not so much. When I was going through a reasonably good (no where near ‘normal’ but as close as I’d been in a long time) period -health wise- I felt like this image was crystal clear. I knew where I belonged, who meant something to me, what my short and long term aims were. Then, over the past 6-8 months, my health tumbled down once more, shaking and blurring that picture until I couldn’t even tell you if it was the right way up. Bringing all that in to focus again is a challenge. That’s putting it lightly. One moment I’m proud, walking a mile and establishing friendships that I’d never thought possible before. Then I’m barely going out, using my wheelchair when I do and feeling as if none of those ‘friends’ even remember I exist. ‘Maybe it’s my fault…?’ I wonder. I pushed it too far and this is where it got me. Deep down I know this is not true, that it might seem a lot now but back then I was within my limits, just gradually stretching them a little further and trying to make my life better. One thing I did do wrong was forgetting. Forgetting the good times never last forever. I didn’t prepare for getting worse. I gave a healthy first impression to those new ‘friends’ and kept on showing only that side of myself- never thinking how difficult that would make everything when it came to explaining why I never see them anymore.
If everyone you surround yourself with during those ‘good’ times only knows the ‘healthy’ you, if you show the world the person you would’ve been, had you been healthy, then that makes it even harder to accept the version of you who isn’t capable of even dreaming about all the things they’ve seen you achieve in the past, let alone doing them. I lied, not to everyone else, but to myself. I told myself I was strong, that I could keep going on with the exercise and socialising as long as I had a consistent routine to keep me going. That isn’t how my body works. Energy is not a currency to be budgeted; it is the barrier inside which I must function. I built up a picture of myself in my mind, supported by work, exercise, hobbies and friends, forgetting that this would only lead to confusion when my health worsened and I lost all those things I’d labelled as being a part of me. Through this I have learned that I am not a collection of things, a list of achievements and pastimes. You can’t truly sum yourself up in words because all- or most, at least -people are constantly changing. Sometimes these changes are slight shifts brought about by circumstances; other times giant ‘epiphanies’ when you realise you’ve finally found the truth you’ve been searching for.
Please don’t do what I did. Don’t think that you have given up on yourself, lost who you are and discarded all your dreams. Life is not over. It’s on partial hold. Even when you can’t communicate who you are to the world without falling down or slurring your words you are still the same person inside. Each small thing I do today is a shadow of what I used to enjoy because my illnesses have stolen my ability to do anything more at the moment. But this does not mean I am a shadow of myself. I’d love to say ‘I’m stronger now’ but I’d be lying so I will give you the truth; I still feel like I’m lost in a hall of mirrors surrounded by a thousand different, slightly distorted, versions of myself but I have more of an idea which one I am. And one day I know I’ll be a good enough shot to break all the glass.
P.S. That sounded rather profound but all I’m really trying to say is relax. It is not your fault. You are still you under all that pain; just a slightly altered version of yourself. I hope one day I can accept this as much as I’d like to.