Well last night ramped up in an absolutely horrifying way. I took that flare up for like 2 hours, then I lost it. Oh my god these flare ups just drop me so easily. They are so intense. And after having a few good days, where I make progress and do all the right things, going back to these hellish days feels just so much worse. Waking up in the middle of a major flare up is just so horrifying right from the too-early hour when you wake up. What I would give to make this fucking insane cycle stop. Please make it stop.

Days like this remind me I need to take advantage of the good days when I do get them. Unfortunately it’s just so hard to pick myself back up, time after time after time, over and over. The sting of these 10/10 days doesn’t just go away immediately. There are aftershocks. It’s a slow fade out, not an immediate perk up. Much of the progress made over the good days is immediately lost, and when you do get moving again, you’re starting from scratch, and the effort to start is that much more difficult because of it. I wrote about that in this blog post. I’m just so exhausted and I need a moment to recover before I can continue on. But by the time I feel a bit of recovery, it hits me again and knocks me right back down. It doesn’t take long to beat all the motivation out of you. You end up wasting potentially decent days because you’re too exhausted and you’re tired of being punished for making an effort.

I’ve been completely paralyzed today. Every time I do move, it feels like a sword being driven through my spine. The fibromyalgia flare up is still in full force. It will be a rough night again if it’s still hanging around. No clue what caused it yesterday. I never know what causes it, or what eases it. If it sticks around for several days, it breaks my mind, and it happens over and over and over.

Took advantage of the afternoon medications to get in the shower and cook some food. First thing I’ve eaten all day at 4:30. I’m grateful for the bit of reprieve I get from the meds. It will probably only last a couple hours, but at least that’s a couple hours where I can move and eat that I wouldn’t have had otherwise. This flare up isn’t fading at all. It’s super oppressive. Feels like a 15 beer hangover plus a sword jammed into my spine. I don’t recommend it.

I just had a flash of thought about how long I haven’t been able to work. How long I’ve lived here vs. how little I’ve worked. All the money I’ve burned through. It started a panic attack cycle, but I was able to avoid it thankfully. It illustrates how much of a fight for my life this really is. I have to fight my ass off each and every day just to survive the day. I can’t stop to think about tomorrow or it will make me panic. I usually will go for a walk to avoid the panic, but I can’t do that today. The fibro flare has me paralyzed from pain, so I have to sit here and take it. It is so very cruel. Can’t run from it, can’t fight it. I can only try to survive it. That’s the best I can hope for on days like this. It’s absurd and insane, and it’s so very painful. I’m trapped. I feel like I’m in a cage and can’t move. It makes me feel claustrophobic.

Just tried a church walk to clear my head and I nearly fell twice while using my cane. It’s not common for me to have weakness in my legs, but when I do, it’s a sure sign the pain is really bad. Normally it’s a red flag for me before the pain hits. When I’m active and able to walk, that’s when I’ll start noticing the weakness, then the strong pain follows. This time the strong pain is already there, so it makes sense that the leg weakness is there too.

By Del

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