I’ve got a few issues. My chronic pain or fibromyalgia, my anxiety (and panic attacks), my PTSD that sometimes pops up, out of nowhere, and of course the fatigue that its accompanied with. And those are all things I understand, and usually know the cause of. Even the tears that sometimes spontaneously run down my cheek are okay(-ish).
No, the thing I’m really dealing with right now is my FND (Functional Neurological Disorder). It’s also called Conversion Disorder, and basically means that there is a problem between the brain and the bodypart that should do something. In my case my left leg that doesn’t move, or sometimes shakes a little, without control. Since last year it comes and goes, seemingly out of nowhere. And when it comes, I’m stuck (because I can’t move my left leg). It’s inconvenient, and I don’t know how to deal with it, yet. Some days I wish I had something to be mobile again, or the strange desire that it was permanent (which I’m glad it’s not).
An FND-episode can be for 5 minutes, or 3 hours, and everything in between. It can be in bed, when I wake up, when I rest, or try to go to sleep. It can happen on the couch, or on my chair behind my laptop. It has happened a few times outside (I’ve missed my bus a couple of times, because I wasn’t able to walk the 10 meters to the bus).I had ones an episode in a grocery store, and of course people had to get to things, which made me walk anyway with a strange foot behind me. For some reason I can stay pretty calm at those moments (I learned that it’s not permanent, that I’m not in danger, and that physically nothing is broken in my body. But at the same time I mourn, because I can’t control it, it seems to control me.
I’ve got a foldable cane in my jacket, that helps when I’m tired, and it gives me the confidence to go outside. But sometimes I wish for better stuff, or more mobility. And in the meantime I beat myself up that I’m not ill enough to ask for a walker or a wheelchair to use parttime. It’s not that I have a problem with the device or it’s users, there is no ableism in it. I’m afraid that I’m not worthy of it.
I was just wondering: how do other people deal with uncertain episodes of any disease? Do you avoid things? Do you prepare?
#CheckInWithMe #FunctionalNeurologicalDisorder #Fibromyalgia #Cane #Wheelchair #Anxiety #chronicdisease #ChronicPain #RareDisease