Winter is a hard time to be a Spoonie. Well, it is for me, anyway. Here in Texas, the weather is mostly mild, but weather fronts come through every few days and the temperature variances are crazy. Yesterday it was in the high 70s, this morning it was in the low 30s and we’ll have a high in the high 50s and by Friday it’ll be in the 80s. Even on medication, my joints don’t know what to make of this insanity. I woke up this morning incredibly fatigued even though I slept well most of the night, and all of my joints aching furiously. Luckily, it’s a work from home day for me, so I can wrap up in a blanket and turn the space heater on.
I’m still adjusting to the idea that I have a chronic condition and that my life will never be like it was before. My brain stubbornly resists even thinking the word ‘disability’ even though I’ve technically had one most of my life, and now I have two. Migraines run in my family and we all just live with it the best we can. It’s only after learning about my rheumatoid disease and researching about it that I’ve realized that it’s really my second chronic condition, and yes, disability. I don’t know why I’m finding it painful and shaming to use that word. It feels overly dramatic, and somehow minimizing of people with more profound disabilities. I mean, after all, I can still get around, take care of myself, and hold down a job. Where do I get off calling myself disabled?
Just typing that out, I find that I really, intensely hate the term ‘disabled’. I’m not disabled, dammit. I have a condition, and one that imposes some disability, but I’m not disabled. The distinction seems to be an argument about being politically correct, but I’m learning that it feels completely different to say I’m disabled versus I have a disability. I don’t think there should be a law about it or anything, but I think people who are impacted by something have the right to speak out about it and ask for consideration in the way people refer to it.
So yes, life looks different as a Spoonie. I have to ask for accommodations at work. Nothing huge, since I already have the ability to work from home, but I need to be able to use that as needed instead of on a regular schedule. I have to prioritize things in my life, and some things just don’t make the cut. I can’t burn the candle at both ends and then catch up on sleep a week or two later like I did when I was younger. Something has to give. Right now the top priorities are family, work, and school. If I don’t have the energy, cleaning and cooking don’t make the cut. I don’t bounce back from illness and injury the way I used to, so I have to take an extra day or two when I’ve been sick. I’m really having to learn to take better care of myself, because allowing one condition to flare up inevitably causes the other to as well. The cascade of pain and illness costs are huge when that happens.
I’ve read articles by Spoonies who say their illness is a blessing. I can’t go that far. What I can say is that there are beneficial lessons that can come from hardship. Learning to let go of things that aren’t as important as others and taking better care of myself are good things. I won’t ever be grateful that I developed rheumatoid disease, or migraines for that matter. But I will figure out how to live the best life I can with them.