Still Here… Still Severe…

Still here, still severe.

Waiting has been the name of the game the past month. My right side weakness hemiparesis is not too bad but still not going anywhere. I've also been having some new numbness in my right leg and right hand as well as fun muscle cramps. I know I am lucky to have something to wait on in regards to probable neuro Behcet's, neuro Behcet's and Behcet's treatments. There are no approved treatments for mecfs and most have given up on experimental treatments which are finicky at best and difficult to access.

I am also lucky to have something else in the works with my dad pulling strings. I won't go into it now as I don't know if it is going to happen. But even having options is a position so few people with severe ME are in.

But despite hoping there's something out there most of the time it's just waiting. Waiting with a migraine. Waiting and nausea. Waiting and cluster headache. Waiting and boredom. I actually think the prospect of treatments after so long without has made it harder for me to focus on the day to day. The idea that I could have a treatment that gets me better makes my life with severe ME seem so empty.

I keep questioning my own worthiness. Why is it that I get a shot at treatment when so many don't? (I know why my dad has money) But I also firmly believe that everyone with severe ME deserves access to what little experimental treatments we have or aggressive treatment of comorbidities, anything to improve quality of life. MECFS has been neglected for so long, it is a tragedy but it also means there is a lot to study.

One little benefit of the hemiparesis is it provides a nice objective reminder whenever my medical gaslighting rears its head. Chronic illness is a mind f*ck for sure.

Not sure what the conclusion of this post is... I guess just a reminder of the person behind the posts and the limbo that is bedbound life. Wish me luck that some of my waiting pays off.