Things got a little difficult last night. I felt super tired. I’ve been pushing hard for the last week, plus the week before that was pure 10/10 days. I never fully recovered from that. Sleep still sucked last night. I’m in a new pattern, and it sucks. I’ll be here for another handful of days at least probably. I was in the last pattern for a long time, and it was pretty good. Right now is pretty much my long time normal sleep. Lots of wake ups, waking up too early. That’s how I slept when I was still able to work.
I’m not sure what today is going to bring. I’m in a lot of pain first thing. It’s never good to start the day that way. Yesterday started with pretty low pain. It kind of tipped toward the end of the day. I don’t think I feel a fibro flare just yet, but it very well could be. I can always tell once the fibro fog hits. For the moment I’m tired and a bit spacey like every morning. It’s been 5 days without a flare up, so I wouldn’t be surprised if it was.
I needed to get to the store, so I forced it. Kind of rough. Very low energy day. Lots of pain. I’m definitley in a flare up. So far it’s more mild than normal, but I it’s ramping up. Pain is getting unmanageable. Today started rough, but it got a lot worse after about noon. Reset that clock! I think I made it 5 full days without a flare. If this medication protocol is working, it will take at least a few months to start turning things around. Until then, it will be a weird, flux period where I don’t really know what’s going on. There has to be a point where I commit though, because I am right on the edge of where I pull the trigger and buy the van and start getting ready to get out of here. If I stick around here too long and things still don’t work out, then I will have wasted months worth of money. One month of expenses in this apartment would last me 3 or 4 months in a van, so I’m cutting potentially years off my available time. I can save about $1000 if I buy all my components right now for the Black Friday sales, which is another couple months worth of living expenses. For the moment, I seem to be having a good response, so we hold for now. I’ll have to see how intense this flare is and how long it lasts. If it’s gone by tomorrow, then we forget about it and move on. If it gets worse, lasts several days, or another flare hits me within another few days, that might be enough for me to make my decision. I need to stop living in denial.
I bounced back a little bit, but I still feel crappy. This is really rattling my confidence. It’s at an all time low already and this doesn’t help. I’m living on the edge, and have been for 2 years. That’s no way to live. Any day now I might have to move out of my home. I might lose healthcare. I’ve lost all my money. I’ve lost my sanity. So much loss, and so many delusions that I will get better. I guess there’s still a chance, but I’m trying to look forward and prevent myself from becoming homeless. Stretching out my money as long as I can. I’m really only days away from making the decision to move out. I’ve been on the edge of something for so long. It really destroys all sanity. It’s brutal. If this isn’t better by tomorrow, that will really rattle me. There are a few vans for sale that I have my eye on. I might just go have a look at one or two of them. Even with the slightly positive results I’ve seen, I still have one foot out the door. Right on the edge. Minutes away really.
Even if this protocol works, it’s months before I start reversing years of damage from this disease. Can I wait that long to see if it works? I won’t truly know if it’s working until then. 5 days of feeling decent is not proof that it’s working. That’s actually the opposite of how the protocol is supposed to work. It’s supposed to make you feel worse at first. I know I can increase the dose and achieve that, but I can’t handle this getting any worse. So maybe I’m not taking enough then, and I’m not actually reversing, which means even many more months before I feel better. If I leave cheap enough and build the van cheap enough, I can break even in about a year compared to my expenses now in this apartment. Is it worth upending everything for that? I really don’t want to deal with building it and moving out of my home. Selling everything, giving it away. Trimming down until I have only what I need and can fit in the van. Too much effort that I’m not able to perform. But I’ve been laying here on my back for 2 years waiting for something else good to happen. I feel like it’s been long enough. “Just another month. Just another 2 weeks. Just another appointment to wait for.” It all adds up over time and takes away all hope. Eventually you have to wake up and realize the truth: Nobody is coming to help. I am on my own and I need to plan ahead for what’s coming.
I said I would give this a few more weeks. I’m about 1 week into it. It has been mostly decent days. I know I need more data to analyze, but I don’t quite have enough time to gather it. I don’t want to be here in 2 months saying, “Just 2 more weeks.” So right now we’re at 2 more weeks before I have to make some decisions. I still need to let this protocol work. I’ve seen some response and decent results. Trying to stay calm and let it happen. I just need to literally buy a little more time.