Tremors
(Warning: this video is extremely shaky and may be bothersome or seizure inducing to photo/light sensitive patients. Watch using good judgement of your limitations.)
So the flip side of the goofy pictures is that the infection has gotten worse. It’s been over a week, starting with night sweats and (worse than usual) stomach upset, then hot and cold spells, then tremors (I think that’s the correct word, it’s close to a seizure) and my lungs are now inflamed. The combination of tremors where all my muscles are convulsing (tightening my lungs) and lung inflammation (causing reduced lung capacity) was terrible. Friday night I was gasping for breath and felt like I was suffocating for 30 minutes or more (I don’t know my sense of time was gone). I swear I could see Cheney standing over me (I seriously thought about waterboarding while it was happening and snickered at the idea of Cheney standing there). But I held on, I somehow knew I wasn’t going to die because I haven’t been cured of ME/CFS yet. And eventually it slowly went away.
The next day I got lung anti-inflammatory meds which really helped. It looks like my PICC line is infected so I’m going to first try to kill everything in it by leaving antibiotics in the line. If that doesn’t work I have to have it removed (hopefully here at home by a professional service) and temporarily replaced with a simple IV while my veins clear out completely. Then it’s off to the hospital again to get a new PICC line. Hopefully I will escape the emergency room with all this.
It’s terrible that we have to deal with challenging life stuff in addition to having ME/CFS which makes it all more difficult. And a lot of the "extras" wouldn’t be happening without ME/CFS (like this).
Last night I slept better than I have in a week so maybe it’s getting better.
Just don’t forget the light. It’s there even when you can’t see it. I promise.
So here’s a video of one of my tremors to compliment my goofy pictures. This isn’t the bad night -that would be too much for you to see and I couldn’t film. Let me know if you see Cheney anywhere in the background.
So the flip side of the goofy pictures is that the infection has gotten worse. It’s been over a week, starting with night sweats and (worse than usual) stomach upset, then hot and cold spells, then tremors (I think that’s the correct word, it’s close to a seizure) and my lungs are now inflamed. The combination of tremors where all my muscles are convulsing (tightening my lungs) and lung inflammation (causing reduced lung capacity) was terrible. Friday night I was gasping for breath and felt like I was suffocating for 30 minutes or more (I don’t know my sense of time was gone). I swear I could see Cheney standing over me (I seriously thought about waterboarding while it was happening and snickered at the idea of Cheney standing there). But I held on, I somehow knew I wasn’t going to die because I haven’t been cured of ME/CFS yet. And eventually it slowly went away.
The next day I got lung anti-inflammatory meds which really helped. It looks like my PICC line is infected so I’m going to first try to kill everything in it by leaving antibiotics in the line. If that doesn’t work I have to have it removed (hopefully here at home by a professional service) and temporarily replaced with a simple IV while my veins clear out completely. Then it’s off to the hospital again to get a new PICC line. Hopefully I will escape the emergency room with all this.
It’s terrible that we have to deal with challenging life stuff in addition to having ME/CFS which makes it all more difficult. And a lot of the "extras" wouldn’t be happening without ME/CFS (like this).
Last night I slept better than I have in a week so maybe it’s getting better.
Just don’t forget the light. It’s there even when you can’t see it. I promise.
So here’s a video of one of my tremors to compliment my goofy pictures. This isn’t the bad night -that would be too much for you to see and I couldn’t film. Let me know if you see Cheney anywhere in the background.