My hands. They are deformed.
I have a degenerative disease caused by my immune system attacking synovium tissue throughout my body, this surrounds joints as well as tendons, ligaments and internal organs.
Fricking awful right? Yep. And it has a pretty benign sounding name which makes it really hard to get across why this is such a devastating disease: Rheumatoid Arthritis. This is not benign. The disease and medication is pretty hard on the whole body. Heart disease and liver failure, oh and a highish risk of lymphoma.
But lets look at the reason for the name: the arthritis. This is not a bit of achey and painy. This is full on erosion of joints that never get better. That never stop getting worse. Once you have a joint where the immune system has had a really good go you are ****ed. All that is left is waiting out the pain for surgery. And let me tell you. It ain’t pretty.
Given my age (young- compared to the age they will generally do this in NZ) I am not likely to get replacement but fusion. Which means no flexion at all. I’ll have to waggle my arms from the elbows. This book explains a lot of the issues specifically related to the wrist (also fingers if you go searching). BE WARNED. Graphic photos of surgery. The snippets view can give you warning of the pages in particular.
As to my other joints? Well my specialist has called them a few names but there is a fairly restrictive view of what is “active” but there is some activity in my knees, ankles and elbows. Oh a lot in my elbows. Funnily enough with synovitis! There are pockets of liquid at large joints (in particular) and I get a lot of inflammation of these near my elbows, knees and hips.
So when I say I can’t do something I can’t. It’s not I won’t. A small bit of damage today leads to a few years less functioning.
And I am currently experiencing a fairly active flare up as I have been off my monoclonal antibody therapy (aTNF inhibitor) for 2 months. This is because the other fantastic side effect of the drugs and the disease is recurrent and long lasting infections. I think I have spent 9 of the last 12 months on antibiotics. And of the last 10 years.. I think I have seen my gp more than I have seen all of my friends combined.
Just to put the work I have done in to perspective and why I take so long between days of activity.