Why it hurts

Because people still only extrapolate from their own experiences of pain.

I have deformities of the wrist. Severe. In fact looking at books on hand surgery I really should have had them “fixed” in 2009. That was my last xray and it showed some major changes. Like total loss of one bone and another literally half eaten away.

Okay, so that makes sense. It’s gonna hurt like grinding glass into those joints. But that is my every day experience. My at rest maybe typing a little on the ‘net. Wen I do stuff that grinding pain is something I long for. You see those specific bones that are gone mean that my ulnar now sits on top of my hand- about stage 4 of a five stage process. Try this. Rotate your wrist so that the uldnar and radius are paralle to each other- you should have your elbow about waist level and hand up palm facing you. Now try twisting further that way using your hand. Try the popposite- where the bones are alredy twisted (palm facing out) Feel that pain down the bone? Worried you are going to pop your wrist? Welcome to my every day reality. It’s not just a sensation of that, it very really is that.

I can’t straigten my elbows because of this either and I cannot wear splints because the deformity is so great the just put pressure on the end of bone sticking up on top of my hand and pushes it further in the mess of bone bits. I have to alternate wearing and not wearing bandages as support too as they sometimes help and sometimes make things worse. And there is very little notice leading up to it.

I have to walk with my hands and elbows in cross arm formation in case someone even brushes my hand as they walk by as waves of fire will shoot up my arm and I will scream and people will think I’m over reacting.

I broke my toes one. Through the joint, sheered half the joint right off. I thought it was just my RA. That is how paintful it can be.

And it will not get better. There is no getting better. I do not need false hope, once you have lost a bone you don’t get it back. This is not just pain- neurons firing signals- this is full on destruction. Everything makes it worse. Everything. I have lie with my arms crossed “mummy” style or risk not just pain but inability to use my hands for weeks or possibly do more permanent damage.

Even other chonic pain sufferers don’t get just how bad this is. No, getting something finished doesn’t feel great. It is just a relief that I don’t have to do it again. No matter how much fun a task is it does damage.

The “fix” Is to chop of more bone and put a metal rod in (pretty sure my regional health board doesn’t have the fancy equipment to have a range of options) and those rods fail often. So the “fix” means I can’t bend my wrists, could potentially crush my hands if I fall or lose my hands entirely given the high risk of bone infection. So no.

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