Other People

I have a lot of people in my life, to varying degrees. My significant other would be the most prominent. He has experience with chronic pain himself, so he understands all too well what I'm going through. He listens and gets me ice packs and tries his best not to get impatient with me when I can't leave the house for days. He takes me to doctor appointments, fetches my prescriptions and makes sure I take meds on time. He talks to the Disability Machine when I don't have the strength. He is completely taken for granted and I am really lucky to have someone with me who cares and tries to make it easier for me.

The rest of the world is harder to deal with. Friends and family all tend to expect a certain person to arrive at their door, but I'm not sure that she is me anymore. She was loud and rambunctious and silly and clever and mouthy. Now my headaches dominate my personality, making me quiet and withdrawn. I hardly ever go out anymore. I see my good friends rarely more than once a week, my parents once a week and the rest of my rather large family once a month or two. And this social life is killing me.

It reminds me of spoon theory. Click if you want the exact version, otherwise here is my paraphrase. A woman with a chronic illness is trying to explain to a friend what it's like to be sick and disabled. They happened to be at a diner, so she gave her a handful of spoons. She told her, "Imagine these spoons each represent one activity you can do any given day. Most people have an unlimited amount of spoons for each day, but with chronic pain, illness and disability, you have limitations. You are holding twelve spoons, what are you going to use them for today?" Then she goes on to explain how just making breakfast costs a spoon and showering is another one. The friend is amazed and sympathetic by the end of the story when she has no spoons and she hasn't made it to dinner yet. It's a little trite and simplified, but the point is valid.

I go to a family function and that takes up all my spoons. I spend a few hours with a friend, just talking, and I end up going home exhausted and in pain. It's not that I don't want to be with people, I do and that's why I put myself through the pain. I think the main problem is me. I don't know how to ask for what I need without feeling like I am weak, sad and pitiful. Asking other people to change their behavior for my comfort seems so assuming to me, but on the other hand, if someone really wants to spend time with me, I suppose they should respect my limitations.

An example of this problem: I'm still trying to figure out how to ask someone to turn down their own TV, repeatedly, without feeling like a jerk. I shouldn't feel that way, I know. As I type this, the logic fairies in my head are going, "Wtf? Just ask nicely." But the looks I get, and the sighs. My instinct at that point is usually to stand up and walk out, but then I'm considered moody or bitchy and someone follows me around asking, "Are you ok?" until I cry. I hate being a complainer, especially a repetitive complainer, so I usually get to the point, mentally, where I feel like if someone knows that noise or smells or whatever trigger headaches for me, that if they are disregarding that and bringing triggers into my environment, well they must not care. Which isn't fair to anyone, but...

Pain + Constant Triggers - Understanding from Others = Suck

I'm lucky that I have so many people around me who care, regardless of how suddenly I leave a room or how many times I cancel on them. But, you know those people I am so lucky to have? Those people who are able-bodied and minded, who can listen to music at any level without repercussions, the people who think its funny to grab me by the waist and tickle me in good fun, or who splash on their aftershave generously without a second thought of seeing me later in the day? I could throttle them.