Chronic illness is such a weird animal. A couple times a year, you might find yourself having a day where you feel completely normal. Pain free, energetic, focused, able to move around easily. It’s euphoric. And you hardly ever realize it’s happening until after the fact, when the pain comes back. It’s pretty amazing when it happens.
And there are days — and nights, oh, the endless nights — where you just want to curl into the fetal position and pretend this isn’t your life, because you are so miserable with pain and nausea. It feels relentless and it strips you down to the animal inside you, the one that’s got its teeth bared and is willing to gnaw its own leg off if it means that it gets to live. You breathe through minute after minute, and that encompasses all the priorities you thought you had, like making sure that you eat a family meal together every night, getting that bank paperwork done, and finishing the laundry. Screw it, says your hind brain. Just breathe, and make it to the next moment and the next breath without breaking.
But in between that pendulum swing are the majority of the days. The days where you are chronically ill but semi-functional. You are aware that you’re not at your best, but you’re ok. You can parent — mostly — and you can work — mostly — and you can be a good spouse — mostly. You juggle your medications and your pain and your need for rest and try not to look too lazy while you do it. You spend some evenings sitting down with your family to dinner. Sometimes you cook a meal, and then dash for the bathroom while everyone else sits down to eat because you can’t handle the smells any more. And sometimes you order take out and tell the kids they can have a carpet picnic with a movie while you curl up in bed, well away from even the thought of food.
You find an endless well of frustration at being trapped in a body that doesn’t allow you to always play with your kids, hang out with your spouse, work full time at a demanding and fulfilling career, and go to all the events you’d like to go to. You face judgment from strangers who don’t understand why you have a handicap tag on your car when you’re able to walk because they don’t see the pain levels or the need to keep your distances short. You face skepticism from acquaintances who see you volunteering at your kids’ school one day and using walking canes the next.
You also find the special friends and family who can handle the unpredictability of being friends with someone who can sometimes participate in their lives and sometimes can’t. You find a level of awareness of your rhythms, your cycles, and your symptoms that allows you to partially predict your illness and your periods of functionality. If you’re really lucky, you find employment with some schedule flexibility, part time hours, and within the limits of what you can physically do. And you find a measure of peace with your reality. It’s not perfect, but it’s not bad. You’re still here.
There’s a certain amount of attitude that goes into having a chronic illness. You accept that this is your body and that you have limitations. It really isn’t the kind of situation where you can grit your teeth and pull yourself up by the bootstraps and you will overcome. The American Dream doesn’t work on chronic illness. But you can give your chronic illness a big old middle finger and have fun with the things you can do. I smile a lot. I laugh a lot. I don’t always feel great when I do it, but the act of smiling and laughing helps smooth out the edges, and makes everything a bit better. It feels good to give my illness the finger.
I refuse to give up on my hobbies, though sometimes I take a break from one for a couple of years before I can get back to it. I refuse to give up on being a good spouse and parent, and I actively look for fun, whimsical things to do with my family when I feel up to it. I build in nap times and treat my down days with a matter-of-fact attitude, because that’s what my girls need, and I reassure them that just because I’m not feeling well doesn’t mean I’ll never be able to play with them. Sometimes — ok, often — I get the comment, “I couldn’t do that. I don’t know what I’d do in your shoes.” And I say, “Yes, you could.” It simply is what it is, and especially when you have kids, you just make things work. You’re neither fish nor fowl, not fully healthy nor fully, visibly disabled. But you’re strong and determined and you can stick it out. So rock on with your awesome self and just do what you can when you can. You’re doing great.