Thursday, 6 January 2011

In the days before we knew ...

Do you wash your eyebrows ? Or your eyelashes ?

Thanks to medical equipment magic, we now have the technology to increase the power of microscopes so that they, we, see the little creatures that live on the hairs of our eyebrows and eyelashes, eating up all the dead bits of skin cells and such (and poo-ing out the parts they can't digest ?)! I don't know if we yet have the technological power to see the little creatures that live on the little creatures that live on our eyelashes, eating up all the bigger little creatures' bits of scurf, dead skin cells etc.

They don't wash off ! The microscopes can see the little hooks they have on their legs, clinging to our eyelashes. Enough. Don't give it another thought.

Isn't technology wonderful. Recently NASA have been working with a UK Uni (Bristol I think) and have discovered, (probably to do with space walking or some other such that I am sure wheelchair users would enjoy), that the inner ear doesn't only let us know where we are in space (up, down, leaning sideways, etc) but also that the inner ear controls the blood flow to the brain. "That's it !" I shouted, to myself: "That's my brain-shut-down thingy."

That was my eureka moment. And my GP's, who was equally jaw-droppingly impressed when I made the link with my weird medical condition that doesn't yet have a name, but will someday.

Background: my Lupus-related health problems are typical for this multi-system disease ... including pain and weakness and inflammation in soft tissues, and joint pains, and profound fatigue, and, and, and, .... and cognitive dysfunction ... and ..., well the weekly low-dose chemotherapy (Methotrexate) that I have been taking for the last thirteen years doesn't help much on two days a week when the side effects take over, but it helps the other five days a week, so I accept it. And fortunately I have a condition that systemic steroid injections really do help. So I carry on.

Until someone turns on a vacuum cleaner/drill/air-con/mobile phone trill within a few feet of me, ... and ... I look as if I am having a stroke. Facial muscles droop, speech disappears, slump in the wheelchair, peripheral vision gone, hands spasm into a claw .... oh yes, its quite dramatic, so I do try to avoid being in such situations and stopping the source of the environmental trigger to this reaction, and getting away from the source really really quickly (electric wheels essential) in order to recover. And the best way to recover, for me, is to quickly gulp down in strong mouthfulls, cold water, to release the block to the blood flow to the brain. Someone has to hold the drink for me. Then within a few minutes blood flow returns to the brain, face comes back, eyes come back, speech returns, hands and slumped body back on line and ready for action. Yup, I'm fine thank you. Onwards.

For years, I have been the one to label this odd reaction to noise and vibration - when, I have been told, I appear to be having stroke - as medical not psychological, not neurotic but medical, not attention-seeking but medical, mechanical-medical as opposed to psychosomatic. Real. Brain overloaded, getting wrong signals from the inner ear, can't cope ... shut down.

Over the years of following other bloggers I have found that many many people with impairments have struggled to get support; practical, financial, medical, because their impairment has not be named, cannot be classified, does not fit a label already existing in the medical dictionary. Therefore it cannot exist. And the person carrying the burden of the very real impairment, symptoms, pain, agony, distress, dysfunction, has to find their own way to survive.

Sometimes we are fortunate to find a medic who goes against this tide of negativity, and supports the patient, even though they do not have a label that can be written into the appropriate box in the forms.

My GP is one such star. She suggested I wrote to the BMJ British Medical Journal, 'Patients' Perspective' to describe my experience, and suggest the connection between Lupus, Meniere's and men in space/NASA's research. I will, when I have the energy and brain power to put it together much much better than I am doing here today.

My Doctor of Osteopathy also gets a gold star, even though he was the second one to trigger this reaction in me, because he worked out that it must be related to blood flow to the brain, and recommended strong swallowing to release the blood flow back to the brain. It works.

The first one to trigger this reaction to me, was the medic who tested me for Meniere's Disease. Squirting water into the ear under pressure. I had my weird reaction a few minutes later, on my own in the waiting room, and was ignored by the embarrassed staff, who left me to it for the half an hour it took me to recover. I was very distressed. In the middle of it I could not speak, see beyond a few inches, or move, but I was aware and could hear everything, so knew I could not be dead, yet.

Later at the hospital consultation with the test results, I was told that as I didn't have the reaction that would have proved M's Disease the ENT chap said there was nothing wrong with me and my reaction afterwards was none of their concern and not related. Wrong. I have subsequently decided, and my GP agrees, that I don't have M's Disease, but I do have Meniere's Syndrome, further complicated by Lupus. That the tinnitus I have had since my teens shows something not working properly in the inner ear, and in recent years is further complicated by the Systemic Lupus. So I have dizziness, tinnitus, noise recruitment, and hyperaccussis. I don't have deafness or the 'drop-attacks' that impinge on the lives of people with Meniere's Disease. And I do feel some responsibility for the tinnitus ... rock band 'Yes' loudly in Sheffield City Hall when I was about 17 and 3/4 years old ... forty years ago !!!

All this meandering comes back to the things the medics don't yet know, like the knowledge we have now, but didn't have before microscopes, about the creatures living on our eyelashes. Someday they will have a name for our weird and wonderful conditions that only we have, peculiar to our selves. Our various conditions will eventually, following research and more progress in medical diagnostic equipment, have a name they can pin on us. Then they will be much happier to take us seriously, and find a way of helping us.

Some day technology will catch up with our differing unique individual peculiar impairments and our realities will become real in the medical dictionaries and there will be a relevant box to tick on the numerous forms to be filled. Then mine too will get written-up and recognised and when it does I would like it to be formally named as Sally's Syndome.

In the meantime, Onwards !


Blogger Laurent MATIGNON said...

I'm a french guy who suffer from tinnitus and hyperacusis too. I just want to let you know that a petition is online (in french, sorry... ;-) ). Its goal is to help find a cure. You cand see it here :

More than 800 persons already signed it.

Cheers from ;-)

Saturday, 3 March 2012 at 13:04:00 GMT  

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