The nerve issues I have are deteriorating and now I’ve been told to expect the possible need for immunosuppressants. Random parts of my body are now prone to pins and needles…sometimes a section of an upper arm, other times a cheek or a couple of fingers. It only lasts for a matter of seconds, usually, but my god it’s irritating. In fact, sarcoidosis is mainly just irritating! A huge pain in the backside… for real sometimes! Occasionally I lose the use of my hands or a leg. And it’s all become so normal to expect and even say that. And let’s face it, it’s far from normal!
And of course no-one quite gets it. You look fine, you’re always so busy, you work full-time… I’ve heard it or possibly assumed it all before. Sometimes folk just give you a look and you know! You’re not dying, just get on with it. And I do just get on with it. Often I get on with it too much. And that is my downfall. I don’t want to admit how ill I am to myself, let alone to others. If I admit it, it’s winning.
I wonder where it will stop and if there will ever come a time when I don’t have to travel 100 miles to the only sarcoidosis clinic in the whole of the UK, in London. Why did I get the rare disease? I don’t want pity. I just want someone to know what sarcoidosis is when I say it. Sometimes medical professionals look at me blankly. They’ve heard of it but have to Google it, or they’ve heard of it but want me to tell them all about it. I’ve become an expert in my own frailties. Though I guess that is true of us all.
On a positive note, I’ve inspired my daughter to become a doctor “but not just one who tells people what’s wrong with them, one who actually fixes them – someone who actually follows it through”. I hope she specialises in rare diseases. There are lots of us out there who will no doubt spend our lives searching for answers. Perhaps fruitlessly.
The one good thing to come from long Covid is the possibility that unexplained symptoms similar to those of patients with other diseases that affect the lungs, like sarcoidosis, or those who have chronic pain and nerve issues – be they from illness, injury, menopause etc – might actually be taken seriously. There is only so long you can moan about your ailments before people switch off and stop listening. We’ve all got problems, right? I wish I could switch off. I’m sick of hearing one part of my brain moan to the other about being sick and tired of being sick and tired. But I’m sick and tired.
I worry it will stop me from doing my job properly, looking after my family, dancing, running. Sarcoidosis you proper suck!