I’ve been meaning to write this post for a few years now, but somehow I have never had the confidence or drive to commit to typing it. I may have glossed over in passing posts about it, but it’s actually time to explain what is actually wrong with me. (or right, depends on perspective.)
In 2010 I was diagnosed with Rheumatoid Arthritis. After suffering months of unexplainable pain in a variety of my joints, affecting my ability to walk initially to not being able to horse ride to the more serious inabilities, such as not being to raise my arms, open doors or flush toilets. At first I don’t think I realised the severity of RA and well, sh*t happens and so I continued as best as I could. 7 years later I am still suffering from severe flare ups turning me from an able-bodied individual to a curled up mess that can’t lift the kettle for a cuppa. And my point still stands of sh*t happens.
Before we go any further I want to remind people that I do not want sympathy, empathy or any of that. We are all given hands in life, and I seemed to get the jokers, but we play with what we have (and I’m doing okay. (seriously, worse things happen at sea.))
So what is actually wrong with me?
I often crack the joke (and my joints) that I am an 87 year old with the looks of a 22 year old, but RA is far from the arthritis we see in the older generation*. Rheumatoid is an autoimmune disease that causes inflammation in the joints. This means pain and swelling for the most part, but can lead to serious and severe side effects. Amidst the swelling and pain there is fluid build up that can lead to infection, dislocation and in some unfortunate cases slipping of tendons. Unfortunately, this is regular for me. I suffer from rheumatoid in the majority of my joints, large and small.
*(Rheumatoid differs from Osteo (the old people one) as it’s not due to wear and tear of the joints. It’s a bit more tricky to explain and to understand…)
Some days I am fine, I am able bodied and pretty much the same as anyone else. Other days, (I can’t say when exactly as it hits you in the face like a wet fish) I am really not okay and need a little bit more help when it comes to the simple things. Things like opening doors, standing up, walking down stairs and brushing my hair. It really is a mixed bag of “what’s my body doing today” and some days I become the embodiment of the white girl saying “I can’t even.”
It’s okay though, I get to play all these exciting games like rock, shelf, tongs, alike to rock, paper, scissors but with bent fingers and the ability to measure right angles perfectly. What can your straight hands do, eh?
Why write this now?
We have all been enjoying the hot weather, (finally blue skies!) but for me it has been stormy and full of turbulence as my joints refuse to behave in the heat and humidity causing me to look a bit like a lobster that’s been run over, and be as useful and active as such.
While everyone is out there getting their tan on and enjoying the beach or lying out in the sun, I am trapped inside physically by pain and my wavy mental state. I need to get some thoughts, feelings and opinions out of my brain so I can join y’all!
For my mental state, it’s a little bit more complicated than others, but I am happy for the most part and believe that “I got this gurlllllfriend” but there are times where I am a complete shipwreck.
Women both old and young have a constant pressure of looking good, with “beach body ready” and constant fashion pressures to adhere to ridiculous standards of beauty. With a physical deformity it’s even worse. I can’t change the way I look. I can’t have surgery to straighten out my feet and hands as it may do more damage for me later in life. I can’t adhere to conventional standards.
I can still do the things we don’t think about doing, like standing up from a chair, opening doors and dressing myself. I can still drive with my windows down and do the air dolphin thing. I may have clawed hands and a beautiful bunion, but I still CAN and that’s more important than some cow laughing at how I look. (And EVERYONE should love themselves.)
Anyway, the sun is shining, my crochet is calling and I have a day to rest my over-dramatic joints before I can (hopefully) return to normality and get on with this whole life business.
Up where they walk
Up where they run
Up where they stay all day in the sun
Wish I could be
Part of that world
Have an amazing day!
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