These holidays are not for me. They are to survive work.
This year I tried to spread my holidays out so every couple of months I would have a breather. In other words, not having to work so I can suffer in the blissful darkness of my own home. I said it before and I’ll say it again: never underestimate the power of being able to suffer alone. No facade to maintain. Sleep if you need to sleep. Get up when you have had enough sleep. No need to go out into the bright, noisy world and pretend the whole time that the shards of glass in your brain are not stopping you from doing what society wants of you. Hell, just not having any demands made of you for just a freakin little bit. Just pure awesomeness. Maybe not the sort of holiday other people think about… but for us lifers, it is just so awesome.
I have just started my last week this year of holidays. And not a freakin moment too soon. I have been just absolutely fatigued lately. I don’t mean nappy or sleepy, I mean mind-numbing fatigue, can’t keep my eyes open and too groggy to remember my name, the date and what the hell is going on. This sort of fatigue could be from the spectacularly horrible month of migraine hell, but not like that is uncommon Or it could be a bit of an FMS moment… where pain and fatigue just hit you like a wall for a bit for no particular reason except to make pain management that much more fun. I am really just too tired to do much of anything right now. I think it is an FMS flare actually because I have had some nasty shoulder, wrist and arm pain that is more intense than what I might expect from a month of migraines, but really migraines and FMS play way too well together and sometimes it is damn hard to separate one from the other. Anyway, I think I broke my shoulder, or at least it damn well feels like it. Stupid FMS. Still, I do find after a couple decades of FMS pain, and the horrific flares that happen, I can tolerate that pain quite well. I may walk gimpy for awhile. I most definitely smell like muscle creams. I use the occasional wrist brace. I most definitely do not do anything that requires walking for more than five minutes. Other than that, that sort of pain is my baseline pain. It is equivalent to a normal person’s zero. Sometimes it spikes right up there, but normally it is just there in the background making me aware of how I cannot move in my environment So who knows? Maybe another decade of chronic migraines and I will begin not to scream silently in my head at the very thought of walking out into the sunshine and spending eight hours under fluorescent lights, in front of a computer screen trying my damnedest to understand what the hell people are saying.
I wonder sometimes what it feels like to be in no pain. I think sometimes all that background pain is like static or electricity. You don’t realize how bad it is until the power goes out and all that background noise just stops and it is so quiet you can hear yourself breath. Like maybe people who are not in pain are just not as aware of their movements and their bodies as some of us are. I know I perceive time differently. The future differently. Goals and ambitions are very short-term ones. So, of course, I perceive space differently and how I move in that space. I am always thinking about the cost of doing things. How much extra pain I am willing to go through to achieve a goal. Like recently we had to clean the house because I am refinancing my house, so we needed an appraisal, which means I at least had to do some of the cleanings I have been too tired to contemplate for the last few years. Washing walls and such. Even with assistance in accomplishing more than I thought possible, I was impressed… but the price was nasty. I mean, of course, I felt muscle fatigue and pain fairly quickly. (less than if I was not on Lyrica by the way). But that instant pain is nothing compared to the agony the next day. I could barely walk. The pain arched from that damned tendon on the bottom of my feet all the way up to my hip joint. Of course, the pain lingered for about a week. I knew that going in, but it needed to be done so I weighed in the pain factor and just got it done.
Apparently, all that intense migraine hell and fatigue are not affecting my appearance since everybody is telling me how good I am doing. Nice little pat on the back. At least I suffer well. As I mentioned in a post already this month these comments are getting on my nerves. I expected them though because I have been playing by everyone else’s rules lately and so, of course, I seem to be functional. Outwardly. Going to work is all that is really required of me. Once I get there, no matter how much pain I am in it is just a matter of getting through the day minute by minute if need be. Getting there is damn hard work… and a fistful of meds. But we all labor under this problem. Pain cannot be seen. So it can be doubted. When I was obviously struggling with it last year, people noticed. Because the very thought of getting through the day brought tears to my eyes. That was from the emotional strain of dealing with chronic migraines combined with the guilt of missing work combined with the intense stress work shoveled out to make me feel that much worse. It happens. It is a heavy, heavy burden to bear. After my leave of absence when the fact hit home that nothing I said or did or how I reacted would change a damn thing because although I was sick, I was not sick enough. The pain did not change at all. I just bottled it up and tried not to think about how much of a price I had to pay to function in the way people expect me to. So I show up. I get it done. So that I can get home and just relax for a moment to do it all over again. I just put my facade back on, the very same one I have worn for a long, long time. It just cracked a bit last year. Now it is back on and everyone thinks I am ‘doing so well’. And since they all believe that, then maybe I am. Maybe I don’t need to hope things will get better. Maybe survival is good enough. Maybe if I pretend hard enough I will even convince myself I am doing better. I’ve done that before after all. I am the only one I really need to convince that I can survive and that I want to. I really believe that the little lies we tell ourselves can make a huge difference in how we survive. I just need to find that believable lie. And then even I will say I am doing better, instead of feeling awkward and uncomfortable when people tell me this because I know it is not true. Plus with all the migraine aura fun I know something other people just do not get and that is ‘seeing is not believing’.