If you asked me recently if I had accepted my illness I would have said yes, absolutely. I've been ill for nineteen years; of course I've accepted my illness. I've adapted my way of life, I use a wheelchair to go out, I rest, I listen to my body, I do all the things I'm "meant" to do, of course I've accepted being ill.
The truth is, that's not completely true, because even now, nineteen years on, I am still pretending to be something I'm not. I'm pretending I'm "normal" just like everyone else.
I do it because I don't want people to think I'm "different" because "different" is weird, it's wrong; it means I won't fit in anywhere or with anyone. Right? I mean that's what we're told every single day, that we must be just like everybody else and if we're not then we're failing. Failing at what we do, failing at who we are, failing at life.
I work hard to seem fine, to seem just like everybody else. Not just for other people, friends, contacts, and strangers; but for me. I pretend for me too. I tell myself I'm better than I am, that I can do more than I can and I ignore the things I can't.
When I sleep during the afternoon I get Mum to tell people who call that I'm in a meeting or I'm out. When people talk about working forty hour weeks I nod and agree; but I never let on I can only manage a few hours a day because that sounds lazy, right? Like I'm not trying hard enough. At least it does to me. If friends are meeting up at eight o'clock or later then I make an excuse because I know by that time of night I'll be shattered and not up to being sociable and when I go places I have to get a lift from my Mum. She has to wait for me and pick me up and that makes me feel like a child. In so many ways I still feel like I am, like I've never got the chance to find my independence because I've never been well enough to be independent.
I know I've felt like a failure for being ill, for not getting better, for not living the life I wanted, the one I planned for. You know the one - school, university, career, husband, house, kids. That's the standard and that's all I ever wanted. Normal was enough for me and it's still all that I want.
The thing is none of those things are impossible, I know people who are ill and have done all of those things, there are ways to have that life; but for them to happen, for me at least, I feel like I need to accept one big thing. I am ill.
There I've said it, I'm ill and while there is hope that I might get better on my own or they might find a treatment or cure, right now I'm ill and there is very little I can do about it. I'm not saying this in a depressed way, although saying it is incredibly painful, I'm stating it as a fact, one that I really need to hear. Nineteen years and you think I'd have accepted it, not just on a logical level; but an emotional one too. I haven't and I'm so tired of pretending otherwise.
That's part of the reason for starting up Live in Love in Laugh in because I'm so sick of waiting to be well enough to go out, to have lots of "real world" friends and a "normal" social life. I'm sick of waiting for my life to begin. Don't get me wrong I have been doing some amazing, fun, exciting things; but they tend to be the big events, it's the everyday things I feel like I'm missing out on. Having a chat with a friend, meeting up for a drink, going to the cinema. As well as a few big things, like girlie weekends away, or a holiday somewhere exotic. I keep waiting to be well enough for them to happen and they don't, so I lock up the disappointment and the sadness, I pretend it doesn't exist; but it does.
Live in Love in Laugh in is about living now, finding ways to live the best life I and we can, doing it together. I can't have the best life now though, if my heart is aching for the life that I imagine, because it's a fantasy and I'd much rather live in reality, not waste another moment.
I'm learning as I go, in no way am I an expert; but I know that there are so many people out there that feel the same, for whatever reason and I just know that together we can find ways to create better lives for ourselves.
How do you accept the things in your life that you can't change? What helps you to cope? I'd love to hear your thoughts.
I won the Good Housekeeping Novel Competition. My novel, The Box, is going to be published on 25th July 2019, by Orion