I found a really good blog post that most all of us would find familiar. Chaos at Christmas, or Hanukaah, or New Year’s, or (-). What most people without disabilities don’t really grasp is “if I get exhausted by the extra work, what’s it like for someone with pre-existing fatigue”? National MS Society Blog: Trying to Make the Holidays Less Overwhelming.
There are many conditions and illnesses, even medicines, that can create fatigue from the simplest activity. Anything from uncontrolled blood pressure to outright Chronic Fatigue Syndrome can make just getting through an ordinary day an act of will.
Now spike that activity level, pile on some emotional stress, maybe a touch of insomnia, and boom–you got a fatigue related crisis.
It all comes to a head around the various holidays–July 4th, Thanksgiving, anniversaries, birthdays, Christmas, Easter… At least most holidays and gatherings are short term events. But the Christmas season starts around Thanksgiving and goes on for some 6 weeks.
There have been holidays where I did all the baking and cooking and wrapping, and was so wiped out I went to bed without making it to the gathering. Someone else had to take the food and gifts, because I didn’t have enough go-go juice to shower and dress, let alone handle hours of “fun”.
Confession time: After a lifetime of living in a really dysfunctional immediate family, I find I actually avoid even the wonderful relatives, especially the kids. Isn’t that awful?
They want to play, they make lots of noise and commotion, and get sad when I say I need to go. They don’t understand, and I can’t reasonably expect them too. How else are they to feel? Worse, often Mom won’t drive herself so I am trapped there until she wants to leave and it’s well past when I need to leave, sometimes by hours. That alone sends my anxiety levels soaring well before the day comes.
It’s not the kid’s fault. They’re just normal kids with an abnormal aunt.
But I feel like a jerk when I have to bail. If I can’t leave, what’s meant to be fun becomes hell on earth. I know it hurts their feelings, probably makes them think I don’t care about them. But for days afterwards the fibro pain is unbearable, my ears ring and roar, the fatigue keeps me in bed, my balance is shot, migraines make me miserable… just taking a shower isn’t worth it. That’s how bad it gets. And stays bad. A long time.
The avoidance is mine. I need to understand it, own it, and deal with it. I’ve been conditioned to avoid being with people if they have any right to have expectations of me. Not because of that particular person, like my oldest brother or my neices, but because of others that have deliberately put themselves at the top of the priorities, and shoved me off the list altogether.
It began with an abusive father, then a passive and destructive alcoholic brother, then an even more passive and emotionally helpless co-dependent mother. They all had one habit in common: their wants, moods, and demands came at the expense of Lisa. They came first, regardless of the harm they did to me. It was like second nature to them. Being disabled, there was no financial way for me to escape.
My father and alcoholic brother have passed away. But I still can’t get away from my mother because of financial limits, and the fact that I do love her and want to help her become healthy, and independent. For some reason I could readily part with the other two, but not so readily with Mom. Hum.
Boiled down, I’ve spent my life trapped and unimportant to the people I should have mattered most to. 40+ years of disregard makes you want to avoid anyone with wants and demands. And my avoiding the good folks introduces hurt from my actions into their lives, which makes me feel worse.
Now I’m not whining, and that’s hard to convey in the written word. I’m sorting. I’m figuring out where my avoidance of lovely family members comes from so I can deal with it and get past it. It is mine to deal with. It is up to me to develop strategies and implement them. Like the author of the blog link, I recognize where the responsibility for changing my feelings and behavior lies–with me.
So…rather than avoid people, what I really want to avoid is being trapped and disregarded.
- do not go in the same car with Mom–if I have a car, I can leave when I need to, and she can stay as long as she wants. That way I have say in how long I visit, instead of someone else saying how long I visit. I know my body’s warning signs, and I know my need to leave will not be respected.
go there if the get together will be more than an hour or so–rather than having people come to my house. The only reason it feels like an invasion is the natural tendency for visits to inevitably last too long. Especially if I don’t see them often. And there’s nowhere to go if I need to, not without being followed or forced into doing something that makes me feel like a jerk (going to my room or asking them to leave).
go more often when possible–frequent, short visits are much easier on me than long ones. Perhaps visit with nearby family every other week, for say, a trip to Burger King with my neice. Lower doses are more do-able, with less physical consequences. If I visit with them regularly, they don’t feel as neglected, nor worry they won’t see me again soon, and try to drag things out or manipulate somewhat to keep me from leaving.
Number three on that list has the ring of a New Year’s resolution to it, for certain. But that’s what personal change and loving family requires–commitment. Sometimes with a bit of wise tweaking in how we go about it.