So, occasionally, I have days where I’m okay. I mean, I’m still in considerable pain, but it’s no more than the level I’m used to, and I’m able to go to the cinema without falling asleep, or take a walk in the sunshine without hobbling the whole way. (It really is the little things.) Some days, I feel almost normal.
But just because I’m smiling, it doesn’t mean I’m healthy. (I don’t much like that word to describe able-bodied people, as it suggests that those of us who struggle with one thing or another are unhealthy, which has negative connotations. But for the purpose of this post, I’ll continue to use it.) What it means is that I’m pleased to be able to do such everyday things without my illness getting in the way. I’ll more than likely pay for “overdoing” it later, but if I can do something I enjoy, then I like to make the most of it.
The effects of my illness can vary day-to-day. I’m in pain every day, but sometimes I get blinding headaches, and sometimes I don’t. Sometimes I’m exhausted by 7pm, sometimes I make it til 10. Sometimes my joints give up on me and I fall over, sometimes I can get around the supermarket. Healthy people don’t seem to understand that, while I may be able to do something one day, there’s no guarantee I’ll be able to do it the next.
My illness is also degenerative, insofar as I’m not yet receiving treatment (pending a formal diagnosis) anyway. So I am gradually getting worse. People ask, why are you limping? What’s hurting today? Well, let me tell you. My right ankle feels as if it’s fractured. It hurts to put pressure on it, and it feels very weak.
My body is not reliable. Some of my symptoms ebb and flow, but I’m always in pain. Imagine a flu that lasts forever. Imagine a broken leg that just won’t heal. Imagine that festival you went to, where you didn’t sleep for 4 days straight. That’s the level I’m at every day. And yet, I still do everyday things. I work full time, I do my laundry and food shopping and clean my house. I feed my cats and try to socialise. But these mundane things take a lot more out of me than they do a healthy person. A long day for me is working, cooking dinner, and having a shower. Usually, I have to pick one of the last two. If I cook a meal from scratch, that shower is going to have to wait until the morning, and I sure as hell won’t be washing my hair.
I compromise every day. In order to go see that movie, I have to clear my schedule for the rest of the day. I have to have easy meals, enough time to shower and recover, and have the energy to travel. If I cancel plans, it’s not because I’m lazy; it’s because I had to compromise. My health beats socialising every time, so if I’m not up to it, we can reschedule. But I try my best to be able to do things. Please acknowledge the effort I put into the littlest things.
In 3 days, I’ll be seeing a rheumatologist. I’m desperate for a diagnosis, and am reaching the end of my tether. I need treatment. I need help. And in the meantime, I need understanding. Happy does not equal healthy (or vice versa), but being happy does mean I’m having an okay day. Let me cherish it.