My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen. I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.
Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips; some days they got so bad I could hardly stand up. I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue. He sent me off for x-rays but nothing showed up. He didn’t really bother to investigate beyond that, even though the pain continued.
Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned. I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.
What a proud Forest Gump moment that turned out to be.
Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat. Oh, how I laughed.
Of course, the heel lift did nothing to help the underlying issue that was Lupus. Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.
Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights. Heel lifts no longer become such a concern as I could barely stand up without falling down.
This was later followed by a night where breathing became tricky and I lost feeling in both my legs. An ambulance was called and I was whisked off to the local A&E. The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy. So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride. Australia sure isn’t the cheapest place in the world to be sick.
Fast forward a year and I’m back in the UK. Out of nowhere my fingers suddenly started to go numb at the drop of a hat. One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea. Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.
Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert. BINGO again. It’s Diagnosis Number 2: Sjögren’s Syndrome. Bit like buses these damn diagnoses.
I honestly can’t even remember how, why or when they reached my final diagnosis of SLE. For some reason, my GP failed to tell me she was even testing my blood for other things. So I suppose it stands to reason that she would also forget to tell me what they had found out.
The first I knew of it was during a nurses appointment at the hospital. Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.
So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know.
Queue much crying by the time I’d reached the car.