Sometimes I wake up feeling low. I’m not in any more pain than usual, but I feel like I am defeated anyway. My brain reminds me that I live with this level of pain all the time, and do okay with it, so what’s the deal today? I review, as I lay in bed,all the things that are good:
We had friends over (impromptu) last night and clicked with them (couple friends are SO hard to find, it’s a tricky dynamic). We did not stay up too late, we did not over-imbibe, I didn’t eat too much, my stomach didn’t demand my attention at 3:00 am (Not much. All it needed was a glass of cold water to put it to bed). I did not wake up with my internal judge saying, “I can’t believe you said/did that!”
I have the next three days off work, I will have time to draw and sew, I feel inspired creatively.
So, then, what gives? My brain; really, my ego, could spend hours trying to figure out why I feel down and also judging me for feeling down and criticizing me for being down, running back to the above and demanding why I would be so perverse as to dare to feel down after a nice night? What the hell is wrong with you, my inner judge demands.
I try sometimes to imagine if someone else were telling me this, and what I would say.
Your pain level doesn’t have to change for you to have a day where even though you’ve carried this load well for X amount of time, you don’t have a moment where you are tired and resentful of the burden. If someone pinched you everyday, even though you know that it will hurt for a moment and feel better, you’d still probably have days where you felt like if someone pinched you even one more damn time, you might lose your mind—or even feel sad knowing that you’re going to be pinched every single day and fearful that someone might start pinching you two or more times a day, but there won’t be a day with no pinching ever again.
The husband half of the new couple friends was interested in my gluten free status, and I said that I had tried it for joint pain, which hadn’t worked, but it did help my gut. This is my general very vague explanation. Later he asked me more about this joint pain, what was it, and I explained the whole EDS thing. His sister is an internist and rheumatologist who practices in a nearby (3 hours away) city, and sounds like a possible candidate to manage me. The wife half has a brother with an unusual genetic condition that the husband’s sister has helped with, so they are a bit familiar with my world. My ego is like, “DUDE, that is seriously good news, what the hell is wrong with you?”
The fact that maybe finding a doctor is good news doesn’t also mean that you can’t wish you didn’t need a doctor and that you didn’t have anything so unusual wrong with you and that you don’t want people to feel sorry for you even as you know of course they would, who would want their friend to have this crappy disorder? They probably don’t view you as an object of pity, they just want to help–but it’s okay to wish you didn’t need any help in the first place.
Also I hurt my thumb yesterday, doing something that I judge as being not a valid thing to hurt yourself doing. I was turning a piece of fabric that would be a tie on a dress, and the pinching and pulling action of doing that suddenly hurt like hell and made it feel like I’d torn my thumb out of the socket. Which, maybe I did, that can happen. It’s a small thing, though, and there are better ways to accomplish what I was doing so that it isn’t as painful but dammit, there is a lot riding on my hands not breaking down, even as I know they are.
Of course you are going to feel upset by being defeated by what seems like a small task–we know the big things we can’t do, but when we run into these tiny things it’s terribly frustrating and scary. Also, given that you can’t take anything for pain, *any* new pain feels a little bit like it’s just way too much to deal with. That’s perfectly understandable.
But, I do not have time for this feeling. I need to be steaming forward on my life, not sitting around feeling like crying over things I can’t do anything about. I’ve got stuff to do, and I want to do it. I haven’t got space in my life for moping.
Maybe you should take it easy on yourself. Let yourself feel how you are feeling. Crying isn’t the worst activity in the world, you know. Give yourself a break.
Ah, yes. Give myself a break. So much harder than it sounds.