Today has been a continuation of yesterday’s madness. The headache followed me through the night. It felt like migraine status overnight. I woke up 50 times and kept taking tylenol for it. It’s finally a little better by about noon. I probably only get 2 or 3 migraine headaches a year. This is 2 within a week and a half. Bad insomnia overall last night too. Today has felt like a hangover, being stoned, being in a psychedelic trip, a fibromyalgia flare up, a migraine. So many feelings of shittiness all at once. And without being drunk, stoned, or tripping. It’s just a massive shit show of feeling horrible. I couldn’t move until about noon. I was stuck in place from all this pain. My poor brain is so fried right now.
On the potentially optimistic side, the new medication could be causing this. It seems kind of like a miracle cure, so I’m super hesitant to give it any credit. It does seem like it’s working as it’s supposed to. It’s supposed to bring out symptoms of the fibromyalgia as it purges the bad stuff from your body. Insomnia and headaches were always big problems for me. Maybe I’ll have to go through it at the end of every cycle. These clearing cycles are supposed to start off worse than the normal flare ups, then get easier as they go. They estimate 2 months for every year you need to reverse. I’m looking to just reverse the last 2 years, so that would be 4 months of this. As if my normal fibromyalgia hasn’t been bad enough, now I have to deal with this for 4 months just to get back to my old, shitty baseline where I was barely able to get by? I mean, I’ll take it over this, but it all sounds so incredibly painful. I’ll keep moving forward with it. It’s the only possible solution anyone has ever come up with. None of my doctors ever recommended it. None of my doctors even ever recommended fibromyalgia as a diagnosis. Doctors are utterly clueless about this disease. What a shame. How many people go through all this pain without any answers or direction or help?
I think I’m going to skip tonight’s dose of the new medication. I cannot take this anymore. If this is in fact causing this extra pain, and I can make it stop, then I will. I am on my fucking knees. This is so bad. So horrifyingly bad. This might be just a normal flare up. I don’t know. I would do anything right now though to make this stop, or to make it ease up just a bit. I will pass out again at this rate. It’s only a matter of time unless something changes. It’s been a few weeks since I’ve had flare ups this bad. The ablation procedures changed the equation for a little bit. This medication changed it for a bit. But it always goes back to the worst case scenario. I can only hope the medication is causing this, but it quite possibly and probably is just the fibro doing its thing. That terrifies me. I have no more tricks up my sleeve and no more ways out of this. My brain is so completely fried from trying to get through these days. Too many in too short of a period. If I’m lucky, I’ll skip the meds this evening, and I’ll feel better by tomorrow morning. I’ll have to go right back onto the meds though. I’m not supposed to be playing with doses, nor do I want to be. I’m just hoping for a little reset.
Out of the last 12 days, I’ve only had 2 days of reprieve. Those were recovery days, not good days. I was only catching my breath. 7 days of hell, 2 days of catching my breath, and now 3 more of hell. I am so incredibly burned out. I am struggling so hard. My head is absolutely spinning. I am so very fearful that this is just the normal progression of the disease. Every time I’ve had some hope in the past, it has failed. Every time I have put in a huge effort, it has failed. The disease always wins. It always comes back stronger than before. Up until this new medication, I’ve never had more than 4 decent days in a row. That is so insane. This time I had 6 days in a row. Then it went back to the normal cycle. I think I’ve only gotten 2 or 3 days in a row since. It seems the disease needs to make up for lost time. It needs to punish me for trying to defeat it. And if I give in to it, then it punishes me for that too.
I really need this day to end. How many times a week do I say that? Most of them. I long for a day when I say I don’t want the day to end. I want to get more out of the day. Just like when I was young and lived in San Francisco. I sucked out everything those days had to offer. Will I ever experience that ever again? Or will the rest of my days be spent hanging on to the couch for dear life, counting the seconds until the day is over?