Yup, yet another article that I wrote for Myasthenia Gravis News back in January of 2022; this one on setting realistic expectations as it related to myasthenia gravis.
When you are living with chronic health issues like myasthenia gravis and traumatic brain injury, setting realistic expectations can be HARD. Especially if your disabilities and health issues are acquired and not something you’ve lived with your entire life. When you acquire limitations through disability or illness, at least in my experience, you find yourself continuously comparing yourself to the you that you were pre accident or illness.
“Well I USED to be able to do xyz.”
“I should be able to get this done in 10 minutes!”….1 hour later and you’re only half way through..
You need more sleep than you used to. You might not be able to eat the same foods because now they illicit an autoimmune response and your joints hurt. Or you can’t do as much computer work because the screen fatigue causes lapses in the ability to focus. Or you can’t drive as much as you used to because the sensory overload that occurs from driving and constant visual changes.
One of things that has worked well for Justin and I, is that we’re not afraid to call each other out on our bullshit. But we do so in a loving manner. He knows my limits better than I do some days; or at least he sees me crossing them before I feel it. I know my limits but I choose to push the boundary to see how far I can go with the new treatment that I am on. He reminds me to take breaks, asks if I should really be doing that activity right this very second when it might be too hot out and another time would be better. He will ask me if I think that’s the best food choice because he remembers the foods that tend to bring on the swelling and the joint pain. And I do the same for him. I ask him if he should take a screen break; encourage him to take a nap he may be trying to put off. Having a supportive partner has made navigating the chronic illness life much better because we have each other to lean and rely on. Thankfully we haven’t had bad days at the same time so we’re able to really help keep each other from falling too far back.
But falling back is okay too. We need to push the boundaries and the limits to know if the treatment or the choices we are making are indeed having a positive impact on our overall health and wellbeing. Sometimes those small changes can be difficult to see if we don’t push way past the boundary. I don’t recommend pushing way past on a regular basis because that just spells disaster. But pushing the limits if you have a support team that can help if you fall to a place where you can’t pick yourself up, is a part of living this life. And yes, sometimes we have to do it even if we don’t have that support network because we just need to know.
Setting realistic expectations can be hard. And if you have a variable disease like myasthenia gravis where some days are really fuckin’ good and others are borderline requiring a trip to the hospital, it can be near impossible to figure out. Taking the time to listen to your body and learn what your body feels like and how far you can push based on how you feel is the key factor in all of this. So take some time to get to know yourself and your body intimately. Find out what foods make you feel good and which ones make ya feel like shit. Learn that if you wake up with a headache it’s probably not a good day to push or over exert yourself physically. Find out how much sleep you need to feel your best. And then go from there.