Hey spoonies. Here's an update from me. I was doing really well for about a month but the last week I have seen huge setbacks and am in a major crash.
It all started with the toilet mess. Luckily we do have 2 toilets while waiting for the issue to be fixed but the stress(physiological and emotional) of the past weekend combined with the fact that I need to walk all the way to the other end of the house to the working toilet has caused a major crash/setback. The pipe issue would be resolved by tomorrow hopefully, however the damage to my body is already done.
I am walking about an extra 500 steps a day and I can't sustain that. For a person without PEM/PESE this would be no big deal. The problem is I am already in a crash and way over exerting myself.
Folks with PEM do NOT get better with exertion. Not only can it cause temporary (weeks-months) crashes but continuously pushing through and spending energy you do not have can actually cause permanent damage /decrease in functionality. It is why I am so sick now. Society forced me to push through and here I am.
My pain in unbearable. I get no pain treatment and am deathly allergic to aspirin and can't take NSAIDS.This is not me being dramatic . if I take aspirin my tongue swells and throat close up and I need an epi pen.
Imagine someone pouring acid on your joints and muscles then slowly tearing your muscles off the bone-this is what the pain feels like for me.
I am also experiencing a worsening of my dysautonomia symptoms as well as significant cognitive decline.
I share my experiences good an bad to not only educate folks unfamiliar with these types of chronic illnesses but to also let others who are suffering like me know they are not alone.
Please excuse me if I seem off or more "negative" etc. It is just part of the illness. Unbearable pain on top of all these other symptoms makes me cranky as fuck.
I'll keep you posted how I'm doing when I can.
