Adjusting is hard

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?


4 responses to “Adjusting is hard

  1. Awwww, Lydia. I know what you mean.

    I think we all walk through different seasons of life. As things change, not everyone comes with us. It’s hard, but I think we all understand that you have new responsibilities and obligations that come with your newfound energy.

    If you started promoting the idea that all chronic illness is fictitious and that all we have to do is pray longer or something like that, I think we would call that betrayal.


    • Thanks Abigail :) Guess I’m going to have to scrap that next post series then… ;)
      (Yeah, that’s definitely a joke, don’t worry. I can safely say I understand more than most how real and devastating chronic illness is, and that ‘all you need to do is pray harder’ is not a realistic response)

  2. I read your previous post, and is crystal clear you are enjoying every single moment. Most of them are simple moments, yet you realize that is what people miss most when they’re sick, and you’re not taking those moments for granted. No one expects you to save the world with your new found health. You should just enjoy having your life back. Betrayal would be if you were saying, “Well, ever since I’ve gotten better… I’ve been thinking… all you people who are still sick aren’t trying hard enough!”