Pins and needles

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!


Chronic pain

It’s been a while folks… but I’m back! I thought you might be missing me moaning about my heart and then my related sarcoidosis diagnosis, so in order not to disappoint I thought I’d go and get another complication to bore you with!

In all seriousness though, chronic pain man…what the actual f is that about?! Mine is my sarcoidosis at play once again, which is, as we previously discovered, why I had a heart attack, which we are now calling a cardiac event, which I’m chuffed about as it might lower my life insurance! Anyway, I digress…back to pain. They say it’s in the mind…arguably not when it’s waking you up in the middle of the bloody night and it feels like someone’s holding a lit match to your thighs, every single nerve in your limbs feels like it’s being crunched, while at the same time a rod is being shoved up your backside or a needle jabbed into the soles of your feet, and all the joints in your fingers are being tugged at. To be fair pain is definitely far worse when we are not distracted, as I’ve discovered, so I’m now making it my life’s work to distract every little bugger of pain in my body by running and dancing the hell out of this life!

My pain initially started a few years back with rectal discomfort that was so severe it made me pass out in the bathroom and I had to be blue lighted to hospital because the medics thought it might be a twisted bowel. Such a drama queen! That pain has come and gone ever since – with no real pre-warning of when it’s going to rock up, and usually sees me running for the loo, armed with paracetamol and ibruprofen, and my IBS meds. No-one talks about toilet-based issues much because it’s, God forbid, not very glamorous but I’m honestly past caring. We need to be honest and keep sharing.

Last December, the three middle toes on my right foot suddenly went numb and since then I’ve had constant nerve pain in my limbs. Some days it’s worse than others. Some days it’s quite unbearable – I don’t know what to do with myself and I get incredibly agitated and feel like I can’t cope with it anymore… but pounding those pavements has been my salvation. Running is my greatest drug of choice, supplemented with specialist pain medication of course. I will do anything to stave off steroids and immunosuppressants.

Yesterday was a bit of a milestone as I was finally seen and assessed by the neurologist in London who deals with sarcoidosis (the only one in the UK!!!). Not only did she believe my symptoms were real (I sometimes doubt myself after previous negative experiences with medical staff) but she’s ordered a whole host of tests. On the cards is another lumbar puncture to rule out MS and check the spinal fluid for other issues, tests of the main nerves and small nerve fibres, as well as a skin biopsy and a tilt test, where they literally try and make you faint. This is because I have been getting dizzy spells for several years when standing up, which weirdly could be connected?!

So now we wait. For the time being though I need to get back running after four weeks off, due to a knee injury (no Bath half marathon for me this Sunday), and clear a space somewhere for a dance floor! Who’s joining me?