In a bid to salvage some sanity, I’m seeking refuge in my blog. The past fortnight I can be summed up as follows: “OUCH, my bloody –insert body part HERE– !”.
I’ve had my new wheelchair for about a month and a half, it rocks and creates the illusion that my spine is safe from imminent collapse and that my rib cage will not crush my lungs just yet (such are the joys of Scoliosis). However, with the new chair comes a new cushion. My cushions are a thing of great science, all are made-to-order and custom-designed; it has taken many a year to perfect the art of the Claire Cushion, alas, I thought we’d struck gold with the new edition. That was until about a fortnight ago.
It began as a twinge in my right hip; I’m quite a creaky old thing by nature, decades of heightened muscle-tone plays havoc with your joints, so I’m not unaccustomed to the odd “random achy day” and simply shrugged it off and thought that another 24–48 hours of moving/sitting sensibly, a hot shower and decent sleep would cure all ills.
Fast-foward 48–72 hours and the twinge had morphed into chronic joint pain in both hips which, days later then progressed into chronic hip-joint and groin pain complimented with a dull aching in my pelvic and lumber regions.
Not. Impressed.
I tried everything: moving, not moving, getting out of my wheelchair and sitting on “normal people” furniture such as sofas, armchairs, passenger seats in cars and dining chairs. It wasn’t helping, all the transferring and acclimatising to new seating just made it worse, not to mention, they lacked the spinal support of the tension-adjustable back-canvas on my wheelchair, so after about 10 minutes my back started giving me jip. After a week of trial and error, I conceded that the new cushion was the culprit.
The surface of the new cushion is not flat, it is, for want of a better phrase: distinctly arse-shaped (that is so a contender for October’s masthead). It has a scooped surface that dips low in the centre and comes up higher at the sides, which for most people is great: it evenly distributes the weight across your backside and bids farewell to a common and ever-present condition of mine that I fondly refer to as NumbBum™. Joy. Except, my body has a tendency to come with more terms and conditions than a Halifax Balance Transfer credit card.
I was born with subluxion of the right hip joint (my right hip was partially dislocated), it’s common occurrence for those with Spastic CP to suffer with subluxing or dislocating hips either at birth or thereafter. Like I said, heightened muscle tone plays havoc with your joints. It never caused me pain, even when walking. However, it spawned deformity and made walking increasingly difficult as I grew up. They (The Medical Professionals) don’t like to do much about it until you’re towards the end of your growth, but I was told at 11/12 years old that if I didn’t have it sorted, I’d be riddled with arthritis at 15 and wheelchair-bound through the pain.
5 weeks after my 13th birthday (12th March 1998), I had a Femoral Derotational Osteotomy. You can Google it, I did and laughed. Bear in mind that no matter how horrendous an illness or procedure, medical websites make it sound oh-so simple and not the months of Bed-Ridden, Living, Breathing, Seventh Layer of Hell in the Rotten, Rank Anal Cavity of Satan’s Dead Grandmother, that it truly is.
I have met number 10 on the pain scale and “Femoral Derotational Osteotomy” was the name his Mother gave him. If I ever have to experience a repeat performance of the 6–12 months of my life that directly followed that day, I’ll make sure to better prepare myself next time, by drinking bleach first.
As it turned out, after I gotten it “sorted”, I still ended up wheelchair-bound at 13 and rather aptly, am now blogging about pain. Sod’s Law makes its money out of me, I tell you.
Anyway, the crux of the problem is that the arse-shapedness of said cushion recreates in my hip about 25% of the sensation the afore-mentioned surgery did. Translation: the bastard thing feels like its dislocating my hips in slow motion and in actuality, probably will do, if I use it for any prolonged period. The fear alone has put sufficient wind up me to make me jittery enough to want to go to Casualty to ask for an X-Ray just to make sure that there’s no subluxing, but I know I’m probably paranoid and they’ll refuse to see me.
I put up with the pain for about a week before switching back to the old chair and flat cushion. That arrangement lasted for a week until I could no longer hack the back pain that the old chair doles out in sizable chunks. I’m now improvising: the old cushion is too wide for the new chair and doesn’t fit, so I’ve removed the new chair’s armrests to make for the extra room the old cushion needs. It’s an unsafe, make-shift, far-from-ideal temporary solution, but it’s either this or being bed-ridden for the next few weeks/months.
Hopefully, a new cushion will be in the works as of next week, but when I asked how long it would take to be made and delivered, I was told “Well, how long’s a piece of string?”.
Oh Goody.
A full-time wheelchair user since 1998, Claire lives in an adapted bungalow in England with her Partner of 10 years and their two dogs: 
I hope the new cushion arrives soon, love. Till then, keep well and drink lots of alcohol perhaps?
V xx
You and me both, darlin! As for the booze, ‘Fraid I’ll have to pass — Even if I wasn’t tea-total, I don’t think getting hammered is a good idea when I’m sans armrests and a proper fitted cushion, the neighbours will end up having to break in to scrape me off the floor!
wow. i hope your new cushion comes soon and you feel better. ♥
You say that as if it’s a bad thing Claire?
I think it’s fantastic you can poke fun at yourself and your problems, more people should learn to do the same. Hope all sorts itself out soon. Sun-rise, sun-set.
I love this about your post today especially:
“I have met number 10 on the pain scale and “Femoral Derotational Osteotomy” was the name his Mother gave him.“
And “Bed-Ridden, Living, Breathing, Seventh Layer of Hell in the Rotten, Rank Anal Cavity of Satan’s Dead Grandmother…“
And for different reasons: “I’m not unaccustomed to the odd “random achy day” and simply shrugged it off and thought that another 24–48 hours of moving/sitting sensibly, a hot shower and decent sleep would cure all ills.”
I’m so sorry you’re having all this pain, Claire. Many things suck in this world but that truly sucks. I hope they’re able to sort something satisfactory out for you soon. Pain like that day after day is lousy and has got to be debilitating and wearing on you. You bear it all magnificently though and come up with these killer sentences. I feel bad for having sort of enjoyed reading this post. It’s so well articulated and bittersweet it’s a plesure to read. If only it weren’t true that is.
Have you got any sort of pain medication to help you through this till you get the new cushions? Pain like that sounds intolerable — I really hope your doctors are on the ball with this and realize the pain you’re in. Give them seven shades of fiery shit if they aren’t and then poke them in the eye with a pencil so they can more fully appreciate the point.
I hope things get better for you soon, sweetie-pie.
I’ll be thinking of you.
You don’t know my neighbours…
Lew: Somehow, I think it’s a case of “if you don’t learn to laugh, you’d never stop crying…”
Sorry if this double-posts but my comp seemed to throw a little paddy when I tried to comment just now. Just wanted to say I totally agree with Sami, in that I felt kinda bad that I got enjoyment from reading about your pain, which sounds awful and i really hope your new cushion comes soon and you start to feel better, but seriously, that was some funny stuff you got up there. It’s great that you are coming from a place where you can laugh at things that suck in your life, and entertain others in the process also. Good on you!
Take care,
Laura xXx
You’re teetotal? Medication-reasons aside, I’m worried now that I may have to re-evaluate our friendship … *sob*
V xx
PCB & Starrynite: LOL, don’t worry — I’d rather people found it funny or got enjoyment out of it than joined my Pity Parade, I was sniggering to myself as I wrote it (yes, I am one of those sad people that laugh at their own jokes).
And if agony improves my writing, then I best go hold my wrists over the gas-rings on the hob for a minute or two — I’ll have a Bestseller in no time! (I should imagine I’ll have to dictate after that, mind…)
PCB: Painkillers are for lesser mortals! Nah, to be honest, I find regular painkillers don’t touch it and the stronger stuff just sends me high — still hurts like buggery, I just care significantly less…
Vixx: Don’t fret — evenings spent with the sober has it’s perks, after all, it means there’s more on tap for you!
“groin pain complimented with a dull aching in my pelvic and lumber regions.”
I was going to insert a smutty comment there..heh. I still could, but I’m too nice..;)
Is there no way to reduce the size of the old cushion as opposed to removing the safety part of the new chair?
I used to find the chairs I had were hell for backache/circulation. If I ever have to go back, I’ll make or commission a custom.
I’m thinking motors, wheelie bars, lights, indicators, built in PC system, integrated remote control for TV etc…heh..I’d love to find a defunct old chassis and do that.
Just an off the wall thought..Argos do “seat cover” things that when connected to a power unit can do heat/massage for the car or home…I wonder if one of those would have any beneficial effect..
For what it’s worth, I find after 2 glasses of wine, I lose feeling in my legs which does an exceptional job of removing all pain and ache from my muscles and tendons. Right foot tendon is being an arse of late..totally tensed up and impossible to walk on in the morning.
Go careful…
Yeah, yeah, that’s what you’d have us believe… :roll:
No, I don’t want to alter the old cushion as I need it to fit the old chair (always good to have a back-up
)
Argos do cheap chairs [hideous things that make the NHS-issue ones look a marvel] — would be a cool project though — could make you a millionaire!
Massage doo-dahs are not so good, the massagy-articulated lumps tend to be positioned for those whose spine is straight — I find they jab at my spine in places they shouldn’t because sections of my spine reside in parts of my back that it shouldn’t! Heat works wonders though, I have this heat pad which I tend to use at the end of bad days…s’luvvly!
That your achilles that’s giving you grief? Mine are a sod, had them lengthened twice now — still like taught rubber-bands on the verge of perishing…
Ouch almighty!
I vote you sit on a lovely hunk. Won’t make the pain go away but at least you can take your mind of things stroking his pecs…Ask if you can get one on an NHS prescription
mebbe we should get you to sit in a huge plaster of paris thing and then they could make you a cusion to exactly match? *imagines sitting in lots of plaster of paris* could be interesting?
But yeah i thought i would just say hi and hope you find a safe solution that makes you more comfortable and doesn’t involve the neighbours having to scrape you off any floors! (who said being t-total was a bad thing anyhoo ;-) )
xoxox