Well, I’ve been dealing with this ME/CFS flare for almost 2 weeks now and I’m still not any better. I figured out the other day that this is the worst flare I’ve had in 7 years. I never feel good, I always know I have ME/CFS but this has been the worst in 7 years. My son was only 1 1/2 years old the last time I was this sick so even though he has seen me dealing with the illness all of these years, he doesn’t remember me being this bad.
This flare has been really hard on him. He’s not sleeping well and he can’t fall asleep and stay asleep unless he’s with me. My husband and I never got him in the habit of sleeping in bed with us even as an infant so he’s always been independent with that so unless he’s really sick, he sleeps in his own room, always has. Since this flare started I’ve been staying out on the couch at night because I don’t want to keep my husband up with my night sweats, frequent waking, and more frequent bathroom trips. Of course, my Interstitial Cystitis flares up too so I can’t get rested.
Today has probably been the best day I’ve had since this flare began. Yesterday the only thing I did in the morning was try to make a grocery list and I was on my computer for about 15 minutes. I had to rest 4 hours on the couch with my eyes shut because just that little bit exhausted me. Tuesday was a really bad day because my son had an orthodontist appointment and I had a dermatologist appointment. We also had to drop my car off at the garage to have it inspected the following day. I was on the couch until after lunch when I had to get ready for my son’s appointment. Until we got done with everything about 4 hours has passed and I was totally and completely wiped out. I came home and immediately crashed on the couch, slept until about 10 p.m., was up for about 3 hours, and then slept until 9:30 Wednesday morning. At least I slept and I wasn’t just lying there suffering from that terrible exhausted sick feeling.
I wonder if what we feel when we are in a severe flare is what dying must feel like? I know I’ve had people who have had cancer describe feeling what I feel. So now I’m starting to feel rough again. It’s time to go and lie down. My son has a soccer game tomorrow afternoon and I hope I can make it. I have missed all of his games so far because of being sick. I hope I wake up tomorrow and feel somewhat normal -as normal as a CFS person can feel.