Accept the Wobble!
ME/CFS, limitations, ableism, friendship, acceptance.
I am head down concentrating hard on walking. We’ve been out and I have walked much further than I expected too. It has taken a lot out of me. I’m shattered. I am using the very little energy I have left to make sure one foot continues to move in front of the other over and over. I’m on the edge of the pavement, my stick on the curb, threatening to slip off into the road. I’m leaning heavily on it. I’m not talking, I don’t have the energy. Maybe it is this that annoys. I am not entertaining my companion, I am not conversing and keeping them in my thoughts. I am just walking. Head down, step after step after step. I feel two very soft bumps at my side, first one and then a short while later another. The side away from the road, I’m not sure what they are they seem so light. I don’t waver in my concentration to keep moving. Then my companion says,
“Can you stop wobbling into me?”
I am shocked. The tone is off; they are cross, disproportionately so it seems to me. I have mis-stepped it seems. Made a social faux pas as well as a physical one. I can’t help my wobbles, and they know this, we’ve talked about it before, and recently. We have laughed at my tale of how I sometimes wobble in an 360 degree circle. And I don’t think I did wobble. I thought I was wobbled into. But maybe I am wrong, maybe I did wobble into them. I am already as far over as I can be. They could always move away from me a little, give me the room I need, there is plenty of space to the other side of them. I can’t move over more or I’ll be walking in the traffic.
“Er, no, probably not.” I say back. I haven’t lifted my head, I am still plodding onwards. But the phrase slowly sinks in more, as I finally process it deeply and now I stop and go behind my companion to walk on their other side. I am a little miffed as I lean on the hoarding that is there, but suck it up and crack a joke about making a clean patch with my shoulder that goes unrecognised. Leaning in is restful but my companion still doesn’t seem happy with me, so I straighten up, and we move onwards. I briefly explain, between gasps of breath, that if I wobble I will always wobble away from the side with the stick, that I can’t help it, and apologise.
I’m not really sure I should have to.
“Oh.” They say, maybe realising they were wrong. “Well, I suppose I do wobble sometimes too.”
I’ve already been asked to walk faster, to walk further. I’m huffing and puffing. Blowing through my lips to help get rid of the carbon dioxide building up in my system, trying to control lactate buildup. It’s almost meditative, blow out, blow out, blow out, blow out. I know I am going to pay big time for my exertions.
I’ve spent the last 15 years not being believed by Drs, nurses, relatives and friends. Medical ableism. I can’t believe myself better, I can’t walk faster without consequences, I can’t not wobble. I CAN’T NOT WOBBLE. It’s not a choice.
There are times when you know something isn’t going to work out. That lightbulb moment that I’ve talked about before. I’ve not stopped playing the incident over and over in my head. I can’t move on from it. It was the proverbial straw that broke the camel’s back. This friendship was not going to be what I wanted it to be. And that is sad.
Friendship is tough for those of us with energy limiting illnesses. We aren’t available when we should be, we back out of plans at the last instance or never agree to them in the first place, we can’t do long-time stuff, we have limits on our capabilities. A few rare gems stick with us and for these we are hugely grateful. What we don’t need are fair weather friends. We need people who understand and buoy us up not drag us down.
We need friends who accept the wobble, who wobble with us, along side us, and with whom we can laugh about it together.
Wobblers Unite.
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I can relate. I’d have to take a couple breaths at the end of each sentence, reading my little ones bedtime stories. The Drs said my bloods were fine and that was the end of that. 😂
There’s a lot of co/morbidites with autism that are stroll not generally recognised. Would you say you were hyper mobile? Painful joints? Bloating? Digestive issues?
I’ve been working on my pesky Mast cells and anti-histamine protocols. And stress it’s always about stress!
Today I still crash but more than not I can do fairly robust days…I’m back to massaging my clients. I did 4 back to back which was silly and wiped me out but still, huge progress.
Just message me if you want to chat about this. No this is not a sales pitch. 😆💖💖💖
I'm so sorry you had that experience! What an insensitive person your friend was being that day. Perhaps they were having a bad day, too. (Or not. Might just be how they are--in which case, good information to have!)
I can relate to so much of what you've written here, although I think I am not as far along as you are in acceptance/understanding. Migraines have put limitations on my relationships for years, but since falling in November and getting a TBI, I'm in much deeper. I'm having a hard time even knowing what my limits are now, and I'm realizing how uncomfortable I am with telling friends/family there are things I can't do. Thank you for helping me remember I'm far from alone in dealing with these feelings and situations.