I always set out to be honest about what it is to deal with chronic illness, and I guess being honest about this too is just as important: adjusting is hard. Even adjusting to something good.
Just to get this straight right now, I wouldn’t go back, good grief would I never go back. I am so joyful that I’m not stuck in that bed any more that I could cry, even now, months later. It is so good, but it’s hard, and hard to get used to. Somehow I didn’t expect that, but I suppose that I should have. But believe me when I say that whatever losses or hardships I’m talking about here are well worth the trade… yet that doesn’t stop them being losses or hardships. So, that’s what I wanted to talk about, really, when I set out to talk about adjusting. Because it’s the very thing people don’t talk about.
There are things I miss – the silence and space for contemplation, not having so much responsibility or a schedule to adhere to, sleeping with double bed to myself. I haven’t written very much because I haven’t had so much time to think – although I am undeniably grateful that I have so much activity to occupy my time. It was hard to get used to the endless days of nothingness, I thought I hadn’t, but it’s similarly hard to get used to that nothingness taken away in one sweep!
There are things I have lost – a sense of belonging quite so firmly to the community I was in, some sort of identity, even if it’s not an identity I want. I feel in some way like I’m betraying all the people I have met who are still so terribly ill. Betraying them because I’m better, and they aren’t; because I’m better and I still don’t have a magic wand to wave to make everything better. Betraying them because when I was so sick, I thought if I had more energy I could do so much more, but now I have more energy I realise I can’t – not now anyway – because so much of it goes on staying alive. I have to work, and look after myself and my family, and after all that there’s probably less time and energy left than I had before… right now anyway, whilst I’m adjusting. It seems a terrible irony. I know that there’s nothing I could do differently, nothing more I can add right now other than those small things I wrote of yesterday, but I still feel like I’m betraying you all. I know if everyone did that, it would be more than enough, but they don’t, and it isn’t, and I wish it was. I’m sorry.
I wonder, is this how my husband felt all that time? Knowing he couldn’t do enough?