Believe it or not, the biggest issue I have with being a big bent Ankylosaur isn’t the pain that travels around my body – finding new and interesting places to raise its head, the fact that I buy pretty shoes because I spend half of my life facing the floor, the tiredness and fatigue that I experience by pushing my body to carry on when it would really rather stop or the fact that I know every two weeks I’m going to wipe myself out with my immuno-kryptonite for a whole weekend. It’s trying to fit in. The blog post that Kerri linked to talks about the assumption that people make when they see a picture of people with chronic illnesses having fun, and how they jump to assumptions that you’re “cured” or “clearly not as bad as you claim to be”.
I’m really lucky, genuinely. I’ve never had that claim made against me, but then again – with medication and the aforementioned immunosuppressives – I’m able to work a full time job. There are lots of people out there who can’t. But I use all of my energy to do so. My evenings consist of coming in, collapsing on the sofa and napping while I listen to the radio. Every other weekend is consumed by dealing with my Humira hangover, and the weekend where I’m not – I either get to spend some time with Cassie (who always makes me smile), or I veg out at home *actually* trying to relax.
Putting on a happy face is important to me, it would be easy to let my AS define me (and it does to a large degree) but I don’t want it to control me. So I push myself, smile, and when most people ask how I’m doing I’ll say “fine thanks, and you?” like a good Brit should. Please don’t take that to mean that I’m cured, there is no cure for AS. It just means that I’m managing, and that looks different to every person living with a chronic illness.
So I’ve decided that this week I’m going to be a bit more open. I’m going to be #keepinitreal for seven days with a picture and a short (yes, I do know how to do short posts!) update on how I’m *really* feeling. I’m not looking for sympathy, or any sort of fuss, it’s just a way to record what my life is living with Ankylosing Spondylitis.
If you’d like to join in I’d really appreciate it, and I’d genuinely love to see how you’re doing. Feel free to co-opt the #keepinitreal hashtag from Kerri (and look out for it on Twitter, Facebook, Instagram, elsewhere on WordPress, and anywhere else you can think), I’m sure that she won’t mind! And if you’d like to read one of her books then you can find her on Amazon as Holly A Harvey.
(Oh, and just a heads up – it’s injection night tonight so tomorrow’s not going to be pretty!)