Something that you’ll read a lot about in the websites and text books, and you’ll hear from your rheumatology team and other Ankylosaurs is the word flare. That’s not flair (which is how we live our lives anyway), and neither does it mean that you set off fireworks (although on days like today I feel that we deserve a parade)! No, it’s when one or more of your symptoms flares up and reminds you that your immune system is a big mean meanie.
The symptoms of a flare up varies between Ankylosaurs. Actually, it varies between flares as well. Sometimes it’s more back pain (when the normal dosages don’t work). Sometimes it’s pain down one or both legs, particularly in the buttocks. It could be an increase in fatigue, uveitis, or neck pain. One thing’s for sure – you’ll know it when you get it! Continue reading “Flares and Scares”
I’ve been quite lucky with my Humira injections, although I’ve had a few infections and bouts of tonsillitis and I get my fortnightly two-day hangover, it means that I can be fully functional most of the time. I’m able to work, get around and generally live life. The injection really does make a difference. (It could be psychosomatic, but I can feel myself getting stiffer and more achy as I reach the Thursday/Friday before my injection day).
And that’s where the invisible part of the illness comes in. I’m very open about my Ankylosing Spondylitis and try to educate people as much as possible. But they see me functioning well and I’m not sure that they realise what a knife edge we Ankylosaurs skirt.
Take this last couple of weeks, I’ve been really busy at work (we all have), so I’ve been turning to plastic spoons to keep myself upright. It’s working, and I only have a couple of weeks to go, but it’s still not ideal.
Continue reading “Catch-22”