Thursday 02 October 2003

Vertiginous cont'd

The dizzy spells - which I get without fail every year in September-October for no reason whatsoever but this year were triggered by a minor car accident - are now totally insane and out of control.   See, the thing about hypermobility is that your skeletal structure isn't being held together properly by ligaments etc, so joints, limbs, movements are floppy.  When someone brakes hard, a normal person might just move a little - I flop and flick and forth like a crash test dummy.  Within half an hour of that incident, I was in shocking pain, throwing up, and then a couple days after that the dizzy spells started.  The first one I ended up falling to the floor, grabbing hold of the bed and trying not to scream or throw up.  I sobbed in shock and terror, I don't mind admitting.

It is really difficult to describe a bad attack of vertigo; logically I know that the world isn't whirling around and over and under me so I don't know which way is up and can't see straight, but its impossible convincing my body of that.  Its fucking terrifying, that loss of control, orientation, gravity even, feeling the world swirl around you and not know which way is up.  All you can do is grab hold of something stable and wait, and wait, until it eases off.  And breathe, making yourself breathe in, out, in, out, because you are so panic-stricken that you forget.  Breathe.

I've had these spells for the last three weeks now, and boy are they getting old.  I'm not getting much better at coping with them, except perhaps the breathing thing, and remembering to keep my eyes open (against my instinctive judgement) and focus on a single point.  I still have to grab hold of Tuxedo, or walls or furniture, but usually after a few seconds it will ease.  Its nasty.  It has made me cautious in my movements which is not a good thing, walking gingerly around like an 80 year old.  I wouldn't mind having a cane at times like this; actually that's perfectly sensible because it might prevent a bad fall (I have shocking black and red and yellow-green bruises all over me).  I'd just look even gimpier than usual.  Hmm. 

Of course I've had this looked into.  Some years ago I had a really bad case of it, and ended up at a neurologist.  After an MRI (a truly yuk experience, especially if one is exceedingly claustrophobic ... ) the neurologist suspected a brain tumour.  That was pretty fucking shocking news ... until the idiot man took a better look and oh no, nothing of the kind (another mark against the medical profession).  Nor was it labyrinthitis (basically an inner ear infection), and after testing involving deliberately bringing on the vertigo and manipulating the head/neck it didn't turn out to be Benign Positional Vertigo, where little crystals in the inner ear roll around to the wrong place and cause vertigo.

I've never met anyone else who suffered the same problem, and so I felt really stupid mentioning it.  Until I read Beth over at Bad Hair Days, and she suffers the same thing.  At the same time of year.  Yay!  Someone like me ... except Beth would never be as much as a dork as me and hers is maybe related to her truly horrible evil sinus infections.  Still, kinda nice to know I'm not the only one who grabs onto their boy in panic, or worries about falling downstairs, or feels like crying or puking when the world goes into a spin around them.

So, no idea of why I get this, or why it's so regular, and not even seasonal; in the Southern Hemisphere it occurs in Sept/Oct when its spring, and in the Northern Hemisphere again in Sept/Oct, when its autumn.  I'd really love to know why, though my theory is its probably eye-related as I have rather excitable nystagmus. I'd rather just accept it as another weird thing my body does and see it through.  It goes away, eventually. 

Same time next year.

∞∞∞∞∞∞∞∞∞∞

On the flipside, pain levels have been somewhat reduced of late, and I've been able to drop my dosage of Heavy Duty Painkiller.  This is a big relief; for a start, the lessening of level of severity of constant pain means I can do more interesting things (ie, have a bit more life and action in my day, simply do more) and am not feeling so fatigued and bummed out/pissed off; the other good thing is that I'm less zonked out and sleepy from taking the Heavier Duty dose.  This is good, and since good days and good positive forward steps (even if baby steps) are rare around here, I'm making the most of it.  It highlights the truth of my fucking-bad-day mantra "it will get better; there is hope; it will get better" - sometimes I doubt that this is and will ever be the case, when I'm so rundown and wiped out and whimpering from that ever-constant godawful pain (which I'm aware of even when I sleep).  But I get there sometimes, somehow, and those days are a gift.

I've gotten a bit superstitious about announcing "ooh I feel better lately!" because sure as eggs is eggs, I'll be back to Shitty Square One the next week.  Maybe I'm playing with fire, announcing it publicly (even if no-one actually reads this) but hey, gotta share the good stuff too, right?

The sessions with the physiotherapist (PT) at the Rehabilitation Hospital are going well.  I have a session every two weeks, where she has me run through my paces, irons out any problem spots in my neck/shoulders (mmm, massage) and proceeds to give me more exercises.  I swear, if I did all the exercises in my programme in one uninterrupted session, I'd be going all bloody day.  There's hundreds, well heaps anyway.  Mind you, they are making an obvious difference, and this is optimistic and motivating - so I do them in good heart.  Most of them involve thera-bands (like giant elastic bands, of different thicknesses/tensions), which I tie around various pieces of heavy furniture so I don't drag said piece of furniture across the room when I pull/stretch the thera-band, plus lots and lots of exercises of the mat-work and floor work variety.  Currently we're focusing on my leg strength and general balance; there are tiny improvements which only I would notice (and possibly Tuxedo) but improvements nonetheless.

I'm very lucky in my PT; she's very very very good at her job, she understands the facts and all the little problems of hypermobility better than anyone I've met in the medical profession, she's practical and positive and never makes me feel more of a dork than I do already.  And believe me, I feel a tremendous dork when my balance and lack of strength and hypermobility all conspire against me so I can't walk without wobbling, let alone stand on one leg for more than a couple of seconds.  But yes; improving, getting stronger, more controlled.  This is exciting but slow, and very very hard work. 

∞∞∞∞∞∞∞∞∞∞

And at least my cat - despite being incredibly long haired and with a phoofy tail twice as big as she is - doesn't vomit up hairballs three times a night.  She did shit on Tuxedo's side of the bed once, though.  (sorry that seems like a total non-sequitur but every online journaller/writer I've read lately seems to have pets that vomit with monotonous regularity, throughout the night, or have plague proportions of fleas, or something ... )

∞∞∞∞∞∞∞∞∞∞

∞∞∞∞∞∞∞∞∞∞