There seems to be an outbreak of wheelchair-related fuckwittery on the Web, with the Moronic Tendency cleaving, as ever, to the view that one must be totally incapacitated to use a wheelchair. In much the same way as the moon is not made of green cheese, the Earth is not flat, and except in Saudi Arabia the Sun does not orbit the Earth, there’s a technical term for this belief – Complete and Utter Bollocks.
I’ve been an intermittent wheelie for nearly 30 years, and I’ve repeatedly run up against this lunacy which completely ignores the fact that were I to be totally incapacitated I couldn’t use a manual wheelchair. But then, when did logic feature in bigotry of any stripe?
So gather round and let me tell you my story in an attempt – probably futile, I know – to lighten your darkness.
Before I go on, this is me – this is the list of medical conditions that I now routinely give to every new doctor I see, because I’ve discovered that they tend to assume that all that is wrong with me is the condition with which I’ve been referred to them:-
In chronological order of diagnosis:-
FMS, (age 19) P
Cervical spine arthritis, (early 20s)
Osteoarthritis, (first occurrence, left hip, age 32, now both hips and widespread PP
Long-term damage from being struck by lightning, (1983) PP
M.E., (1985) Dx 1995, ME clinic, RLUH PP
Angina, since mid 80s
COPD, (first indications 1996, precursors – bronchiectasis and asthma – since age 2 after simultaneous measles and whooping cough trashed my lungs) PP
Heart failure, Dx 2011, APH. Consultant failed to record it, confirmed by cardiologist, early 2012, APH
Aortic valve calcification & stenosis, Dx mid 2011
Bilateral Lymphoedema (legs) This is currently in remission. Even so, during a normal day my right foot swells from its normal size 9 to size 13. This is not fun. PP
Primary Addison’s Disease. Dx March 2013. I was not informed, nor was my GP, until after I’d figured it out for myself a year ago.
Leg ulcer, growing by the day and terrifyingly painful. Onset early 2014 as a result of Lymphoedema. Awaiting amputation of right leg. PPPP
Conditions causing wheelchair use as a result of pain:-
P = Pain, PP = Severe Pain, PPPP = Off-the-scale, mind-numbing, soul-destroying, life-threatening, Pain.
The result of all this is that, on foot, the bathroom, 8 yards away from my bedroom, somewhat less from where I sit at my computer, can be too far to walk most days (or nights), needing a pee bottle at best and at worst a commode. And none of it is helped by the fact that the average GP has no real conception of extreme pain,** though my suggestion that on the day of their qualifying this lack could be remedied by the disabled community lining up to beat them with shovels proved quite popular.
**And I’m talking, my dim-witted friends, about the sort of pain which, every morning of your life, would have you debating whether pulling the plug would be better than getting out of bed to face another day of agony. There would be no point in staying in bed, as the pain will have already joined you. Which is why I’ve been awake today since 04.30 and, trust me, I am in no mood for your immature, ill-considered, bullshit! And yes, I did have that internal debate – I have it every day. Whether I consider the fact that I am, for now, still here a win or a loss, I’ll let you figure out. You might need to use both brain cells.
But to return to the case in point – wheelchairs and the use thereof. No, one does NOT have to be totally disabled – or “paralysed” in the parlance of the one-dimensional numpty world-view.
As I said, I’ve been an intermittent wheelie** for nearly 30 years (I was assessed for wheelchair use by the NHS in 1986, but have mainly bought my own chairs as those I was issued with were far too heavy and cumbersome), but despite repeatedly announcing that I was going to go full-time I eventually bit the full-time wheelie bullet only about six weeks ago, when standing or walking became painful beyond belief. And you, you witless tossers, and your ilk, are substantially to blame for that.
**For those unfamiliar with the term a wheelie is a person who uses a wheelchair. A power wheelie uses, fairly obviously, a powerchair. I have both, depending on need though my manual chair has rapidly assumed permanent status.
There’s a reason for that. My manual chair was made to measure, which, at its price-point, (£1,500**), means that a stock frame has been adjusted to fit me (I suspect, no matter how much you pay, that’s mostly what happens). Add to that an anatomically-sound cushion – the most insanely expensive bit of kit you are likely to buy if you are disabled, I’ve had cars that cost less than some cushions – and I can sit all day in the thing without discomfort and with the minimum of pain. I have a Jay Soft Combi P Pressure Relieving Cushion currently £63 it’s the cheapest anatomical cushion I can find. Tip: If, like me, you have to shorten it to fit your chair, take a slice off the back NOT the front. A cushion should not put any pressure on the backs of your knees – there should be 2 or 3 fingers of space.
**Sorry, but for those of you lucky enough to have avoided wheelchairs, while you can get one for under £300 this is an area in which you really do get what you pay for. For a chair that is reasonably light, responsive, a pleasure to use rather than a burden to be endured, and made to fit you, this is cheap. A couple of ill-considered mouse-clicks could easily have taken it over £4,000 – which I would have liked – but my budget was £1,500. The only fripperies are the anodised high-lights on the wheel brackets and castor forks. The full-on black finish – including black hubs, spokes, rims and pushrims – was overpriced.
I’ve also transferred the dimensions to my powerchair setup, but simply can’t get the same degree of pain control, which is why I’m sticking with my manual chair.
Since I made that decision my range, pain (still extreme by any normal standard on an average day), and my overall health have all significantly improved – as long as I don’t try to walk and keep standing to a minimum.
However – and this is a point I have to keep making over and over to my various doctors and nurses – I cannot eliminate walking and standing entirely, much though I would like to. I live alone, so anything that needs me to be on my feet, be it cleaning, cooking, changing my clockwork bed, taking delivery of my groceries – any damn thing at all – I have to do it.
It has been suggested that I need a carer. I do, I admit that, but in the words of my ex as she disappeared over the horizon, “You’re too bloody independent for your own good!”. Though even now I’m at a loss to know why she viewed this as a capital offence.
It’s true, though, that I deeply resent the fact that I need help (I do not, and this is where my ex had it wrong, resent those trying to help me).
But I digress.
To get back to wheelchairs, though all but the most obdurate will have figured this out by now, I use them because they make my life easier, they reduce my pain, they increase the distance I can move around under my own power to several hundred yards in my manual chair from single-figure yards on foot. For someone like me, who used to walk for pleasure, clocking up a couple of thousand miles in an average year, the benefits, both psychological and physical, of being self-mobile again are beyond measure.
My upper body strength has dramatically improved (essential if my amputation goes ahead). My home is on a hill, so the car-park, for example, was a no-go area as it sloped steeply and I couldn’t cope with it. Now, I can. It hurts, and it’s slow, but I can do it. This means that once the weather warms up, my old Quickie Ti with the FreeWheel adapter will come into its own and I can get out into the great outdoors (well, OK, Royden Park, Wirral), with my camera.
One unlooked-for benefit from my manual chair is that, no matter how strenuous it is, it has no deleterious effect on my COPD, whereas walking does. There’s a reason for that. When walking, I have to support my own body weight as well as move it. In a wheelchair – as with swimming – my body weight is supported, and that weight is more or less evenly distributed through my hands and arms, back, butt, and feet (which is why it’s worth taking time to get your wheelchair properly set up), so that almost all my effort goes into moving.
And all that is why, after far too many years, I have finally become a full-time wheelchair user.
I should have done it decades ago.
So, that’s why I use a wheelchair. The big question is, do any of you doubters now understand any better why we take to life on wheels? It’s not, necessarily, because we enjoy it** – it can be bloody hard work. For all of us, one way or another, it’s because it improves the quality of our lives. There are almost as many reasons for taking to wheels as there are people doing so. I can assure you, though, that “just for fun” is way down on my, and, I believe, on any normal wheelie’s list of priorities.
**Though I confess I do for pretty obvious reasons – unless it all goes horribly wrong I might get my life back!
For some it’s the difference between being trapped in bed or in a (normal) chair and being mobile (the beauty of a powerchair, for example, is that if you can use just one or two fingers, you can drive one; there are even adaptations powered by sucking and blowing.
Although I’ve mainly used powerchairs and scooters until recently, I feel that my manual chair is the way forward for me. Hell, I might even live longer – and if my pain can be minimised that might actually be worthwhile. I certainly feel better physically (although if asked to say exactly how, I’d be hard pressed to come up with an answer), and I appear to be sleeping more soundly. Just not for longer, which I badly need.
One final thought. I saw on Twitter the claim that painful hips are made worse by sitting in a wheelchair for extended periods. A sweeping statement and not universally true. While I don’t doubt it was true for the individual concerned (and wheelchair set-up can be critical – the degree of seat “bucket” for example could affect hip pain), you simply can’t generalise to this degree.
I have osteoarthritis in both hips (left hip since age 32), and as a result the degree of bucket on my seat is minimal – the front of the seat is just a couple of centimetres higher than the rear, and the seat-back is vertical and comes just below the bottom of my shoulder blades. I spend upwards of 16 hours a day in my manual chair, and I have no pain in my hips beyond an occasional dull ache. Compared to the searingly agonising “lightning-bolts” of pain that being on my feet causes, this is nothing.
I’ve just ordered a pair of Surge LT pushrims from Spokz, as my current conventional ones are far too smooth and I’m sick of getting my hands and mitts filthy gripping the tyres when the going gets hard. Not cheap at £200, and delivery is 2 weeks (shipped from the US presumably), but they should be extremely beneficial. You can download a brochure here and view the website here.
My hand size is stock Medium and I’ve opted for the smaller LT. The difference between the two sizes is minimal, the Surge being a mere 3/8” bigger than the Surge LT. I am, though, at a loss to know why the smaller version is the more expensive. Only by a little, but it still makes no sense.