Climbing Stairs & Muscle Flares
It’s 3:13 AM and I am laying in bed going down an LGMD-induced Google rabbit hole. I know this is a place we’ve all been with our chronic illnesses, and nothing good ever comes of it. But I’m currently in a flare-up, and between that and my insomnia, it leaves little time to sleep.
I made some stupid decisions over the weekend. I should know by now that climbing stairs = muscle flares, but unfortunately, in a mimosa-induced, bridal brunch state, I decided to ignore this fact. That was Saturday. It’s Wednesday. And I am still paying the price. This is a lesson I keep having to re-learn as my disease progresses. And while new areas atrophy, I’ll continuously have to impose new limits and boundaries on myself. I’ve struggled the most with this in group activities— bachelorette trips, family vacations, etc. So while I’m being reflective, I’ve decided to jot down some areas I could improve and lessons I’ve learned along the way. Who knows? Maybe you can relate to it as well.
I make dumb decisions a lot. But I make even dumber decisions when alcohol is involved. How my muscle weakness, flare-ups, and inflammation show themselves are usually (not always) delayed. I typically don’t show debilitating symptoms on the spot. And when I have a little liquid courage in me, I feel invincible. For context, I’m a social drinker. So, if I’m doing some kind of activity with friends or family, I’m even more inclined to decline any help and insist I’m fine overdoing it to feel normal; which leads me to my next point…
Sometimes I just want to feel f*cking normal! And that leads to problems… I am so sick of looking for accommodations, worrying about flare-ups, obsessing over my medicine, going down Google rabbit holes at 3 AM… The times I tend to overdo it the most are likely when I’ve hit a limit on these in one way or another. And when I’m surrounded by non-chronic friends and loved ones who don’t have to worry about these types of things, my boundaries tend to slip... Since my flare-ups do not typically onset the minute I do something dumb, I will do my dumb thing and pay the price for it later. Is it solid logic? No. Do I always weigh it out before? Not really. But I always pay the price. And that price is getting higher and higher.
I don’t give myself a lot of time to recover. I tend to try to bounce back as soon as possible. Why? See reason #2. I despise losing my sense of normalcy and routine. It makes me feel guilty and lazy. So, when I’m in a flare-up, I tend to try to heal as fast as possible so as not to inconvenience myself or those around me longer than necessary. Again, this is dumb. I know. And it often makes it take even longer to recover, as it makes me overdo it much quicker.
I gaslight myself. A lot. I don’t know where this came from or when this started. I think it’s a result of some medical trauma from my childhood neurologist, but I am constantly convinced I am faking it. My biggest fear is not being believed, and if you have a chronic illness, you know that that’s a common factor in visiting a specialist. Sometimes, I’m so fearful of this, that I start questioning myself. It’ll be the middle of the night and I’ll be holding court in my brain, lining up evidence, and presenting arguments. Absurd…as the evidence was used for the diagnosis itself, and the reason I’m awake holding court in the first place!
So what now? I know that the urge to feel normal will never go away. I will always grieve normalcy. But I think the key is to redefine what normal means to me. Rest isn't laziness—it's responsible. Setting boundaries isn't being difficult; it's wise. Listening to my body isn't a fabrication; it's self-awareness. These are my normals, and embracing them can help me avoid flare-ups so I can enjoy my life alongside my able-bodied loved ones.
And listen, this is no easy task and I’m certainly not there yet. Redefining normal doesn’t change that I don’t get to take long walks on the beach anymore or live in a 2-story home. It doesn’t give me my muscles back or change my genetic structure. It simply means normal will forever look a bit different for me—and perhaps for you too. And that's okay.
Be well,
Amanda
