Quite a few years ago I wrote about arthiritas and how it was beginning to affect my daily life. I wish I knew then what I know now. And I wish I had been gentler on myself, my body, my mind and the way I viewed myself.
About 5 years ago I was finally diagnosed with psoriasis arthiritas. Its a type of arthiritas where my own immune system attacks itself. It eats away not just at the bad things but the good stuff too. It's a progressive disease that worsens over the years. You can't stop it although you can have treatment to slow it down and hopefully beat any long term effects of it.
I've struggled with pain since I was younger...in my teens, although not nearly as bad. Days after I had my eldest Joshua, who is 11 and a half, my body flared up a it has never been the same. Hormones triggered something and all this time later I'm one of the 1:3 people that have arthiritas and one of the ones that has a cocktail of medication In order to live a relatively normal life.
But I wanted to talk about it more for a couple of reasons. First, because its getting worse. Second, because people's understanding of arthiritas is uncertain and very often flawed. Third, because ive had many judgements cast over the past year that have been frustrating and hard to swallow. And fourth, because this is a big where I wrote about all things I think are important. And to me, this is important
On a good day, I take paracetamol once and can get away with twinges. I live this days and I'm lucky to get 3 sometimes 4 a week. I definitely make the most of them.
On a bad day, I cannot walk. I can't bare weight on my feet, knees, wrists or shoulders. I take painkillers from paracetamol and codeine to tremadol and diamorphine. On these days I often can't grip a book. My fingers won't close together. Sometimes I can't get shoes on. I recently got swellings so bad I couldn't lie on my back. I get caroul tunnel in both wrists because they swell and press on my nerves. I'm cold all the time in a flare up. In fact, that's a sign a flare up is coming. I get exhausted. And grumpy. I eat more than I should because I feel sad. Sad because I can't play with my children as much. Sad because I can't lift them, cuddle them hard, twirl them, chase them and sometimes get down on their level. On a bad day they have learnt to touch me gently. And let me rest. But they shouldn't have to.
I self inject twice a week with methotrexate and benipali. This raises my blood pressure which means I take medication for that. It also makes me feel or be sick regularly which means I take anti sickness pills. I also lose lots of hair so i take daily folic acid. I have weekly blood tests to measure my liver and kidney functions. I pick up other infections, very often tonsilitas, because my immunity is low.
And most of the time, nobody knows.
Because it feels invisible. And because I'm only 40 and I'm 'too young to have arthiritas'. And I worry more than anything that no-one will believe the pain I'm in because very often, the swellingbis last thing at night. The physical thing that people need to see to believe, only comes up when I stop moving. When I sit and relax or lie down to sleep. And then wham... its there, and nobody else is.
I have been on the shielding list for the whole of covid due to my medication and immunity. People questioned me as to why I wasn't working. Why arthirias warranted me to be shielding. One person even showed me her toe and said she had arthiritas in it and that she could work so why couldn't I.
Another told me 'blimey, they sign people off for anything nowadays'.
Arthiritas can start at any age. It isn't always hereditary and it hurts and it is scary.
I work with children. 3 and 4 year olds primarily. Its scary to think of a future not doing that because I can't bend properly. Or because I couldn't move fast enough in an emergency. I want to work. I love what I do. But I don't want people doubting me when I'm in pain.
I guess the purpose of this is... don't judge. And as cliché as it is, be kind.
Invisible illnesses are a hard burden to carry. None of us want to cancel appointments. No one wants to pretend all the time that they are fine when they aren't. No one wants to be in pain.
I know I don't.
But i am. The majority of the time on different levels. And what I need are people that believe me. Listen to me. Help me rest. And have my back if I have to cancel.
Its not just a physical thibg. It's a mental one too. Because physical pain takes its toll and we all need to support each other.
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