whirligig, whirligig


Because when sorrows come, they come not in single spies, but in battalions*, I am now in pursuit of a new diagnosis. Yes, a new chronic illness. Because I might as well collect the full set.

I’m having trouble with vertigo again. I have kept having it on and off: in the past it’s been blamed on labyrinthitis, and it may indeed have started as a result of that, but there are other possibilities and I’m trying to get those sorted out once and for all.

The most likely contender is something called BPPV, and I am 99.9% sure that is my problem. The important part of that is the ‘B’ for ‘benign’, meaning it won’t damage me** and it will respond to treatment. I understand that if it is BPPV it will most likely keep coming back. But that’s okay if I have a plan in place for managing it whenever it does.

So I’m getting a brain MRI tomorrow to cancel out anything bad*** and next week I’m going to some physiotherapists who specialise in vertigo and balance disorders, to learn some exercises that will help next time. And early next year, an ear, nose and throat specialist.

That’s on top of upcoming appointments with my eye specialist, my pain specialist and my rheumatologist, plus my usual regular GP visits and bucketfuls of pharmaceuticals.


Pretty much the rest of my year: me, my stick and a doctor’s waiting room.

(The practical upshot of all this is that my friends and family should not expect to get expensive pressies this Christmas!)

In the meantime I can work, as long as I am careful, which is good. I am using my walking stick to give me extra stability.

Unfortunately I can’t drive safely, which complicates life hugely, especially with all the appointments! Cycling is out for the same reason, so I have been relying on Shank’s Pony quite a bit. At least I’m getting fitter!

Also unfortunately I can’t really sleep well either. Oddly, the vertigo has started to become really severe at night, bothering me even as I sleep, and I wake multiple times to the sudden terrifying sensation of spinning like a Frisbee. In space. A Space Frisbee.

These ‘bed spins’ are really scary and make me very nauseous, so I have to take anti-nausea meds which make me drowsy, which is annoying when you can’t sleep. What a pity they don’t help the vertigo either!

The other really annoying thing is washing my hair. Tilting my head back to rinse out shampoo brings on another Space Frisbee situation, not great when standing in a shower with a slippery soapy floor!

Luckily I am paranoid and had proper weight-bearing grab rails installed. People thought I was a paranoid hypochondriac*****, but I have the last laugh! HAHAHA! It’s great that they are proving so useful.

Even if you are totally able-bodied, I still recommend you include them in your next bathroom upgrade. They aren’t expensive, and the fact is that anyone can sprain an ankle or develop a balance problem, and it’s better to have them there before you need them.

So, you may be asking yourself, what does this vertigo have to do with chronic pain and PNH?

Probably nothing at all. I feel like people must be judging me as a dreadful hypochondriac, but I think this may fall into the category of ‘co-morbidity’, or the way that once one health thing fails, everything else follows like a house of cards. Even quite random health issues can start to crop up, as body and brain are dealing with all the extra stress.

On the bright side my chronic pain is definitely responding to the ketamine. I still have it, and it can still get just as bad, but it definitely takes longer to kick in.

Once I manage to sort out this vertigo I am hoping to be in a position to get off the opiate painkillers and start concentrating on getting a bit fitter and having something resembling a social life. What an amazing thought!

In the meantime I’ll be working on my ‘farmer’s tan’ with all the walking about in hot sun wearing sandals, instead of dashing about in my lovely air conditioned car.


* Don’t you hate that?

** Unless I topple down a flight of stairs or into the path of a bus, and I promise I won’t.

*** I am certain there is nothing bad and it will cost me a large amount of money****, with no rebate, to prove as much. Ouch.

**** Seriously, I’m talking several weeks of groceries, an expensive winter coat or a luxury spa day.

***** Mind you, I’m not saying they’re wrong.


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