Participant Page: Help me raise funds and awareness
Living with a balance discorder
“The good news is you haven’t got a brain tumour,” said the doctor. “Or multiple sclerosis. And you haven’t had a stroke.”
My heart stopped. If that was the good news, what was the bad news?
The bad news, as it turned out, really wasn’t that bad. The diagnosis was labyrinthitis, a condition of the inner ear.
It had all started when I’d woken in the night to go the toilet, and suddenly dropped to the ground. I had been in bed since then, and was now unable to walk more than a few metres. Three weeks later, I was no better and had been sent to see a Consultant Neurologist.
When I walked, I staggered like a drunken sailor. The world spun around me. As far as my brain was concerned, the laws of physics had ceased to exist. Objects that should have been motionless glided forwards and backwards. Flat ground stretched away from me at an angle – convincing me I was about to fall. Anything slightly further away shimmered as though it were boiling in the heat.
It took several more weeks for me to learn how to walk again in a straight line. Walking, then running and Pilates helped enormously. Over the last few years, I’ve had episodes of vertigo every few months. But I’ve learned to live with it, still grateful that the diagnosis wasn’t multiple sclerosis, a brain tumour or a stroke.
VEDA: raising awareness and advocating
Recently I discovered VEDA – the Vestibular Disorders Association – based in Oregon, the USA; there's no British equivalent.
I discovered people with vestibular disorders far worse than mine: people who are bedridden for years; people who experience hearing loss along with vertigo; people whose symptoms are comparable to stroke.
And I discovered an astonishing lack of comprehension among the medical profession and the general population about vestibular disorders. Which is why VEDA advocates with healthcare professionals and works to raise awareness.
Support VEDA on 20 May
On Saturday 20 May, people across the world are walking to the end of the road, hiking up mountains or running several miles to raise awareness of balance disorders and to raise money. I’ll be running 10 miles.
Please give money so that VEDA can continue their great work. Your donations will go towards VEDA’s new online support group teleconferences - which will enable them to reach people who are lost and alone and need a compassionate ear.
And if a balance disorder strikes you, you’ll know where to go.