2010, bless its wee socks, was the year I really came to grips with what it means to have a chronic illness. Let’s get some vocab out of the way: Western mainstream medicine makes a distinction between “chronic” and “acute” illness. Basically, it explains how long something’s wrong. Chronic = three months or more, ongoing (as opposed to on-again-off-again, which is recurrent rather than chronic); Acute = less than that, without coming back. A broken leg, a dose of the squirts, an eight-week flu, life-threatening salmonelliosis: these are acute conditions. Endometriosis, asthma, autoimmune disorders: these are chronic. It’s a distinction of time rather than of awfulness.
The big thing I had to learn in 2010 is that a chronic condition involves negotiating a helluva lot of life things. In March 2010, I caught a weirdo virus thing that made me all spotty and tired. I did my best to jump on it with some diligent cortisol management, increasing my dose and getting tons of rest. But things got tricky. In May, we bought a house; in June, a coworker with whom I worked closely got sick; and then in July, another coworker suffered a personal crisis — I mention this because the absence of those two coworkers effectively tripled my workload. I lost a lot of weight and was constantly tired and really gloomy. What started with a virus ended up being months of Addison’s-related stuff to be considered and negotiated. While it never got totally out of hand — I never had to go into hospital or anything — I had to deal with daily fluctuations in energy, appetite and mood. This is what I mean about learning to live with a chronic condition: some days it will feel easy, some days hard, and some days you won’t notice anything at all. But it’s rarely the same, day-to-day.
When I was first diagnosed, I reassured myself that managing Addison’s would be a walk in the park: take your measured dose of replacement cortisol every morning and you’ll be fine. But the body’s systems do not work in isolation and a challenge to one is a challenge to all. I want to stress here that I’m not a doctor, just someone with Addison’s disease and an overenthusiasm for sharing details. Things I learned about chronic illness in 2010:
- If you are feeling subpar a lot of the time, that will soon become your normal. This is scary. When we’re dealing with pressure, especially work-related, it’s easy to lose track of how long it’s been going on: after six weeks of ten-hour days, you look around and think “huh, don’t we usually have July?” It gets away from you, and before you know it, you’ve been feeling tired and overstretched for weeks. As time goes on, this becomes your normal: you forget how good you used to feel. The idea of doing stuff after work is ludicrous because you just want to crash and you wonder how you ever used to find the strength. Want to seriously deplete your quality of life in the long-term? Change “normal”. Set yourself up so that you assume feeling tired and perpetually on the verge of tears is how things always are. This is a huge trap for chronic condition sufferers.
- Asking for help shouldn’t be an issue, but it totally is. When you’re finding your condition presents a daily set of challenges, it’s a funny headspace to be in. You feel as though your condition is tinging every part of your life, because you’re thinking about it so much. But you don’t want to be a whinger or a wet blanket, so when people ask how you are, you say “fine”, and when people ask what’s been happening, you say “oh, not much.” You don’t say “I feel like shit in a dirty glass” or “I spent Saturday laying in bed wishing I had the energy to fart”. At the same time, you can be so freaking bored with thinking about ‘having a condition’ that you just want to pretend it isn’t even there. Talk to people: tell your family, your friends, your partner if you have one how you’re doing. If you feel self-conscious about talking medical stuff, preface it with a warning along the lines of “Things have been rough, and I’d love to get something off my chest if that’s okay.” Don’t let them say it’s not okay.
- Keep track of yourself. Pay attention to how much or how little you’re eating, and what you’re craving. Pay attention to how much sleep you seem to need; whether you’re having a big energy crash mid-afternoon; having enough water, getting enough exercise and happy times. Pay attention to your world: if you’re stuck in what feels like an endless headspace of “I feel like crap…oh well, mustn’t grumble…nobody listens anyway” then you are going to wear yourself down and forget that life can be waaaaay better. Keep a journal, or a bullet-point list if that’s more your thing, noting what you’re eating, how you’re feeling through the day, how much sleep: anything that will help remind you to think about how you’re doing.
If you stopped reading now, you’d come away with the impression I spent all of 2010 wrapped in a sack that said VICTIM. That it was the year I began to identify myself as an Addisonian and nothing more. But nothing could be further from the truth. This was a year where I learned to accept the impact Addison’s has on different aspects of my life. It was the year I learned what it meant to really run out of energy and hit the wall, and what fatigue can really, truly do to a person. But it was also the year I learned how to cope with that and what I can do to stop it; how simple it is to cherish and respect my body, despite the limitations that Addison’s may, at first, seem to impose.
When you suffer an acute condition, you see a doctor. But when you’re dealing with a chronic condition, you can’t go to the doctor every day. That’s not to say that you shouldn’t see them frequently, especially if you feel like you’re having trouble managing it, but we’re talking about a mid- to long-term situation here, and you are going to have to do some self care. You don’t need a degree to know what I mean: eat properly, get a bit of exercise, have a chocolate milk every now and again, and try to laugh more. Get to know your body and how it works; understand how and why it fluctuates and changes; and work with it instead of trying to pretend it’s not happening.