My Life Is Not Consistent
Most of my life isn’t consistent. Some of it is, like staying home all day, every day. Basically doing the same activities over and over. What I’m trying to say is my “health life” isn’t consistent. Not in the slightest.
Every day I wake up and it’s a completely new day. Yes, I know it’s a completely new day, but I’m trying to say that almost nothing carries over from the previous day. Not even the pain sometimes.
I can be flaring one day and wake up out of the flare the next. Or, I can go weeks at a time not needing any help, to suddenly needing assistance at home and resorting to staying in bed for days.
I often go from using a cane one day to not needing any help the next. I’m absolutely grateful for that, but it’s hard to know what’s in store for the near future this way.
Fatigue plays a very similar role to the pain. I never know how I’m going to feel from one day to the next. It’s like a grab bag from day to day. What will I get today, a Monday? What will I get on Thursday? Only waking up on that day will tell me.
I can be fatigued for weeks at a time and have one good, “normal” day. I can also be doing well and be completely blindsided by a day spent in bed. I recently was able to bike around the lake near my house and I remember feeling “normal” again. I hadn’t biked in months, but this one magical day I was able to. The normal feeling didn’t last long.
There’s no telling how I’ll be on any given day. It creates a lot of frustration and uncertainty in my life.
One area of my life where this creates a lot of frustration is trying to plan. It’s incredibly hard to plan events or activities with friends. I could wake up on the day of the plans and be completely unable to move due to pain or fatigue.
I could just generally feel crappy, as well. There’s no telling. Planning vacations has become even harder as the years go on. It almost feels impossible to plan a trip more than a few months in advance. I never know how I’ll be when the date comes.
I’ve had to come home from trips early, or just lie in bed in a hostel for the majority of the day because a sudden flare-up occurs. It’s an awful feeling, where something is supposed to be fun and exciting, but that huge part of my life has to step in and tell me to take it easy when I don’t really want to be taking it easy.
It’s hard to handle
Sometimes this lifestyle is hard to manage, especially going from a good streak to a bad one. It takes a lot out of you mentally to have to constantly be going back and forth and there never seems to be an end in sight.
All that matters is that we have people in our lives that are understanding, there for us, and genuinely caring. It’s our support system that really keeps us sane during these times of inconsistency.
Do you use the word disability to describe your AS?