“Well it can’t be that bad, if you’ve been putting up with it for more than two years. Why are you bothering with the surgery?”
Yes, this was just said to me by someone near and dear. They seem to think I’m having surgery for fun. Even though I’m pretty clear about what a huge chicken (and I do mean huge) I am about anesthetic, and how much surgery is NOT fun.
They’re questioning how it got so bad. In a disbelieving way. As in, it can’t be that bad. You’re exaggerating.
The answer is simple. Things get bad very slowly. It’s the frog in the saucepan of water, slowly heated to boil. The frog won’t jump out and save itself, because the water heats up so slowly that it doesn’t notice how hot it has become. And gets boiled to death.
This is the same thing. The pain slowly gets worse and worse. A little worse every day. So slowly you don’t notice the difference, but two years later you realise you’re in bad pain all the time, and can only move your thumb and forefinger with any degree of accuracy or strength.
And I have complained about it, over and over. After three doctors have told you it’s nothing to worry about, and there’s nothing that can be done, how much more can you do as a patient?
The irony is that a friend of mine has cubital tunnel syndrome as well. She has very painful pins and needles and numbness. Of course I realised I had all the same symptoms. But I had been reassured that I didn’t have it. She even told me all about it. That it needed to be treated early, or the damage was irreversible. Hopefully I was sympathetic and supportive of her. But I didn’t connect the dots that I had it as well, and I’d had it for a very, very long time. My hands just slowly got worse, and I figured out ways of doing things as I needed to. I’m sure we all do. Ways to get the jar lid off, or to change the light bulb, or to strip the beds, or to put socks on, or hold onto a barbell, or to open the car door.
You just find a way. Or you don’t.
I was told by my GP, my rheumatologist, and my neurologist that it was just an annoyance, and there was nothing to be done.
It gradually has gotten worse and worse. Now it’s as severe a case as my surgeon has seen. She’s confident she can help. She told me straight up my hands will never be normal. She’ll be very happy if I get 60% function back.
And people close to me STILL question my illness. I really must look awesome. I mean really!
The thing is, my hands don’t hurt any worse than my knees, or my elbows, or my hips (in fact my hips are much worse) or my shoulders or my ankles and toes. My lower back stands out as the worst pain, and having one part of your body hurt the worst means you tend to focus there. Sure, my hands hurt heaps as well. But my back is worse. And the hands are just like the knees and the shoulders and the rest of it. It’s all just a wall of ache on a good day, and knives on a bad.
And if you’re told that nothing can be done about it, you shut up. And suck it up. And find new ways to do things that don’t require as much grip strength, or finger dexterity.
But that doesn’t mean you’re making it up. Seriously. Ten years in, and we’re still at ‘You’re making that up! You’re exaggerating!’.
So no, dear one. I am not exaggerating. I am not having surgery I don’t need. I’d love to not need this surgery. Because I am a chicken about surgery. I’m tough with pain, but I’m a total baby about surgery and anesthetic and hospitals. But if I don’t have this done now my hands will become lumps of…clag. About as useful as an ashtray on a motorbike. I only really have control of my thumb and forefinger now. Once they go, nothing is coming back.
So surgery it is. Both arms at once. My surgeon is doing me a favour doing both at once. I’m trying to be creative and see it as a challenge. Figure out ways to brush my teeth and wipe my butt with two arms immobilized. Doesn’t sound like fun? Well, you gotta laugh. There will be a way. There is ALWAYS a way. Always a work around.
But it doesn’t help to have someone questioning me. Again. Aren’t we passed this by now? Yes, I really do have Mixed Connective Tissue Disease. And it’s pretty bad. It’s not enough that it has taken my marriage, most of my friends, my career, a huge chunk of my self-esteem, my financial future, my dreams of travelling Europe, oh and one potential boyfriend (or so I tell myself)…
In short, I think MCTD, RA, Rhupus, Lupus, whatever you want to call it, has taken enough from me. I think that the $253 a week that I get in government benefits aren’t worth all of that. So no, that’s not my motive. It certainly wasn’t to get sympathy and support, cos that didn’t work out well at all. So why? What was in it for me? Why are people still questioning me?
I guess it will always be this way. I’ll take it as a compliment. I. must. Look. Awesome.
And mostly it bounces off, but I’m a little stressed and over emotional about the upcoming, very necessary surgery that I’m having, so this one found its mark, and upset me. Hit a nerve so to speak! Haha.
And now I’ve had a whinge I feel better and I’ll get back to more practical things.
Like appreciating the really good friends that I do have.
Like once again reminding myself that I live in a whole other world to most people. And in most ways I’m glad that that they have absolutely no freakin’ idea what my life is like.
Like adding drinking straws to my shopping list, because I’ll need a straw to drink my wine.
See? There’s always a workaround.