Wednesday, 15 August 2007

Daily witterings

'Blackmore Vale' - Jake Winkle

A lovely meander around the back roads of north west Dorset, not to the Gillingham and Shafetesbury Show, as the mud would have defied the wheels. Shame that. Through the lovely Blackmore Vale. Narrow slow roads, wide verges, wide thick hedges enclosing varied shaped varied greened fields, oaks and silver poplars, stone houses, deep streams (as deep as January, but its August, so what will the streamside roads be like after the winter rains !).

On to a nearby town to follow up my Bump's recommendation for a new pillow.

There is a whole subset of vaguely cripped not-strictly crips, who stress about their pillows; a different subset to those crips who do similar about their beds or sheets (yes, Charles that's you).

One of the many aspects of Meniere's Syndrome hyper-accussis is the noise that pillows make. Well, I have at last found a solution. Its that NASA-inspired stuff Tempur and not only does it not make a noise in my ears as I fidget to get comfortable, and dissuades me from fidgeting, it even silences the full volume pulsing roaring whooshing sound that comes, unbidden unwelcome, once or twice a month and stays around for a few days rendering me incapable of sitting still and listening to it, or getting to sleep at a reasonable time.

Now I want the matching mattress too. And, bless me, I thought it was just the lack of love that made me sleepless.

Some new information, well new to me, detailed here for the record for other travellers on this noisy tinnitus deafened route, trawling the blogosphere for information on Meniere's.

I have recently found the evidence* for my belief that Meniere's, which I have had for decades, is all the fault of my Lupus, which was diagnosed almost one decade ago, but I now understand has been around for most of my life. Its called Auto Immune Sensoreonuro (nah, not going to work is it, the spelling, I'm just going to have to get up and find the printed article).

*Autoimmune Hearing Loss. Author: Elaine Moore. Published March 30, 2007. (Found where ? Sorry, lost the source.)

The article was found via my blog site meter; if I follow a query that led to my site, often I find interesting related stuff to what I have been blogging on about.

In this case, the article discusses Auto-immune sensorineural hearing loss and is not focused on SLE, indeed it only crops up as: "... other causes of auto-immune sensorineural hearing loss such as ... Systemic Lupus ... should be rule out before a diagnosis of auto-immune sensorineural hearing loss is made." Complex because I don't have any hearing loss, and this 'almost as an aside' reference to Systemic Lupus in the picture, is the closest yet I have come to finding proof for my belief in the connection between the two conditions. Because I have not got an official ENT signed diagnosis. The Meniere's Society have been my only source of information.

I gave up on the ENT (ear, nose, throat) consultant years ago, when he began to go down the same route as my then (male) GP: Female, no obvious cause, therefore neurotic. Thankfully my female GP has always supported my belief and been happy to discuss Medscape articles with me, once she realised that I do not visit the wilder shores of internet medical diagnosises (sees ?) and cures.

The meandering route today through the Vale in my new vehicle, was to train my posture in the new driving position, to encourage my joints and muscles to adjust to a new seat and steering wheel configuration. My WAV is beautiful, and I don't wish to be heard complaining , so I will whisper this:
the seat is very uncomfortable and unsupportive but I am sure, given a month or three, I will get used to it and stop whittering on about it to anyone who happens by to admire the new wheelchair accessible vehicle. It does not help that everyone who sits in it enthuses on the wonderful seats -well, all I can say is: VERY short torso and VERY L O N G L E G S may equal average height but it don't fit the average seat.

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10 Comments:

Blogger BloggingMone said...

Glad to read that in the end your tinitus wasn't caused by Rick Wakeman! Noisy pillows can drive me crazy as well, even though I do not have tinitus. Most people, however, do not believe that pillows actually can be noisy.
I have a similar problem with car seats. Mr. M and I are almost of the same hight with him being just about 4 cm taller than me. However, when we are sitting next to each other, he seems to be much taller, because most of me is legs. Inside a car my knees usually stick out left and right to the steering wheel. Now with our still new VW Golf Plus it is entirely different as the "Plus" stands for plus some space. The seats are about 15 cm higher (further apart from the floor that is) compared to a usual Golf, which is like sitting on an ordinary chair. Great!

Thursday, 16 August 2007 at 10:00:00 BST  
Blogger Sally said...

BM - I don't know, a shared enthusiasm for Top Gear and Rick Wakeman, and shared hyper sensitivity to noisy pillows, and most of you too is legs - do you think we share DNA too !!! No, impossible - I can't knit.

My Golf Caddy Life, which may be the same as a German Golf Plus, has a ratchet lever to raise the height of the seat, but it moves the seat forward at the same time, causing problems for the knees as you describe, whereas the seat on my previous Golf just went up. Given that the steering wheel has that magic VW ability to go up, down, forwards and backwards, it aught to be possible to configure the seat/steering wheel to be as comfortable as my old Golf used to be, but it is not, simply because the seat goes up AND forward.

I am wittering again.

When Mr M next visits Poole, come by ferry if possibe; drive him there in the Golf Plus, then you and I can meet on the Quay and compare seats ! We might even get Charles to join us. Ha !

Thursday, 16 August 2007 at 21:36:00 BST  
Blogger Ol Nobby said...

Strange weee aside.

A few years back we, a Behavioural Phstchologist and I conned my way into a position as an Internet Tutor at a High School.

When it was discovered that I could not remember students from one lesson to the next (Shhh) I was moved to look after a very strong 16 year old non comunicative Autistic Student.....He had a perchant for physically attacking his former Teacher Aide whom I was told was just a neurotic female!

I do not know if anybody else has had experience of "looking after" a 16 year old strong Non Communicative Autistic but it can I assure you be enuff to make anybody neurotic! Or at least ready to DUCK!

And No I never did find his one special talent which all autistics had, except for sifting sand from hand to hand

Funny thing is when I was assessed as having Brain Injury I was removed from the work as the school.
Although thanking me for my wonderful work they now considered me a risk to have in the workplace

Neurotic female? One who does not like being grabbed kicked or belted at unexpected moments? when powers that be refuse to accept that such Students can and do

Therefore "Neurotic" Must equate to knows what they should not and scares me that I may be seen through as not knowing that which I should.

Friday, 17 August 2007 at 03:28:00 BST  
Blogger BloggingMone said...

I have no trouble in driving a British car with right hand steering, because then driving on the "wrong" side of the road kind of feels allright agian, but I will never ever again bring a German car over to Britain. I have done that once and it was a nightmare. Everything just feels wrong. And I never knew if I was still obeying speed limits, because my speed meter is in kilometers.
I have put my German car in a car park in Brighton once and only when I was approaching the barrier on my way out, I discovered that the machine (or whatever it is) in which I was supposed to put my ticket was on the other side of the car. The trouble is that these barriers only open for a limited amount of time, so I left the engine running, pulled the handbrake, jumped out of the car, ran around it, got rid of the ticket and then zoomed back, jumped into the car and took a formula 1 start to make it out of the car park before the barriers would slam down again. There was a car behind me with three kids inside, who almost collapsed laughing.
I think we will rent a British version of a VW Plus and then go to Poole for a seat comparison.

Friday, 17 August 2007 at 09:36:00 BST  
Blogger Sally said...

Ol Nobby - in my experience, to be labelled 'neurotic' means that the medics or other authorities, have not yet been able to arrive at a diagnosis, so therefore the condition cannot exist. Rather than admitting this,they call the patients neurotic.

To have an autism spectrum disorder, from my understanding, can result in savant qualities or abiities, but not necessarily so. My nephew has Asperger's Syndrome and excels at some things and struggles with other aspects of life, employment and relationships. Autism often indicates a high intelligence, which is frustrated by an inherent difficulty in some areas such as expressing, communicating or relating, and sadly can sometimes result in violence - to the autistic person and, as a response, by the autistic person.

Andrea, linked on my sidebar, has written about all sorts of relevant stuff that you might be interested in, on her site:
http://qw88nb88.wordpress.com

Friday, 17 August 2007 at 16:41:00 BST  
Blogger Sally said...

Yes, the ticket machine at the car park exit has caught out many a crip, but I chuckled to read of your Formula 1 start to avoid the barrier.

So yes renting would make sense. I look forward to a Quay side seat comparison !

Friday, 17 August 2007 at 16:44:00 BST  
Blogger Elizabeth McClung said...

I like learning things and read up on Meniere syndrome which sound pretty horrid.

Also, why is it that GP's (or even specialists) are so quick to move to nuerotic (or as I am finding out over here PTSD or other mind controlled illnesses - they have even gone so far as to list heart attacks and cancer as forms of whatever the new word is for physcopysomatic (sic)).

I am really glad you found a solution that works. Ever since puberty I have had hyper-acute non differentiating hearing - which means I hear everything all the time. So to sleep I have specially made ear plugs, a sound proofed room, my partner takes 2 kinds of special medication to make her breathing silent and then we sleep facing away from each other. I honestly don't know why I haven't been suffocated in my sleep by her.

Is there anything you do fo rthe pulsing roaring sound? Other than survive?

Monday, 20 August 2007 at 22:47:00 BST  
Blogger Sally said...

Hi Elizabeth

I often think that I can cope with MY stuff, but how on earth does anyone cope with what they have to live with. All those adaptations you and your partner have made - just to sleep !

Fortunately, I do not have Meniere's disease, with progressive deafness (oh god no more Faure, Mozart, Beethoven, Bruckner ...)or the 'drop attacks' where people are struck down literally, vomitting and cannot move. I have M's syndrome, so lots of stuff, but to be perfectly honestly, Meniere's is not the worst of it - I worked part time from home (employment law case research) with Meniere's. Its the Lupus that got me, but then the wheelchair for Lupus made my dizzy Meniere's life so much easier !

GPs, any medics, are just human so faced with such a one I smugly think: I am more self aware than you; as they sit there playing god. In the dim and distant past when only males were allowed to be doctors, they were taught, and believed, they were just a smidge lower than God, so if they didn't know something, it could not exist. There are a few dinosaurs, males, left from that era, but like the other dinosaurs from a more distant era, they will eventually die out. I hope.

The pulsing roaring rushing sound - what do I do > survive ! But I don't get much brain work done - I made quiche and scones and fruit cake and cleared out some easy to reach cupboards, and ditto filing, and and and - anything to take my mind off it.

Today is day six, and yesterday it began to receed. In a few days time I will wriggle comfortably in bed dropping off to sleep and feel a huge sense of wellbeing, then I will realise why - ITS GONE.

Monday, 20 August 2007 at 23:07:00 BST  
Blogger andrea said...

Sally, anyone who says that even a regular pillow cannot be noisy needs to be thoroughly pummelled with pillows. Someone once recommended a buckwheat pillow to me, but I immediately dropped it right after picking it up -- even at arms' length, the crunching sounded like someone snowshoeing across eggshells!

I looked at the autoimmune article you mentioned. Human physiology is not my forte, but from what I can tell, it would seem reasonable that some cases of tinnitus and/or hyperacussis and/or Meniere's (dang that looks funny without the accent marks) could be autoimmune in aetiology. I suspect that these diseases are probably multifactorial in origin (variety of causes).

If you like a good rant about attribution errors and "neurotic females" then you might enjoy this: Whining From Another Hysterical Female

andrea

Sunday, 26 August 2007 at 17:35:00 BST  
Blogger andrea said...

PS "medical diagnosises" = diagnoses

di-ag-no-sees, just as you thought

Sunday, 26 August 2007 at 17:36:00 BST  

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