Wheeliedom is upon me…

Probably for the best, too.

I’ve been talking, periodically, about becoming a full-time wheelie for quite a while, but I keep putting it off in the vain hope that things might improve. However, as getting to, and staying on, my feet brings me into sharp collision with the law of diminishing returns now, I believe it’s time to bite this particular bullet.

I got out of hospital almost a month ago, as weak as a baby and, like some  babies, I’ve failed to thrive. I am, admittedly, somewhat more active than the care assessors expected at this stage (they say that it normally takes months to come back from 6 weeks in hospital, though I suspect that it all depends on what happens to you during that period – major surgery, for example), though to be fair I do have a very simple lifestyle, for the sake of spoon conservation. I’ve also regained a little of my strength, but only a little – most of my muscle mass is still missing. I do have a very good appetite though – in fact I’m ravenously hungry all the time – which is why my weight and waistline are increasing.

Overall, though, I’m deteriorating – a fact of life that there’s no escaping – and it seems to be the lymphoedema/cellulitis combo that’s wearing me down. Been reading some newish research into lymphoedema and cellulitis, and it seems that the latter really can poison one’s entire system, and it’s almost certainly what triggered the crisis that eventually put me in APH. But there’s an upside – the research says the best drug to treat cellulitis is Amoxyl, and I’ve got a fresh, unopened, box of 500.

In fact it’s probably my intake of Amoxyl (500mg daily as prophylaxis, and 500mg to 1g  every 8 hours in a COPD flare-up), that kept the lymphoedema/cellulitis suppressed as a relatively minor nuisance for so long. No idea what made it explode into such a massive problem though. No idea why I’ve had the uninfected lymphoedema for so long either, except that it’s an indicator my heart has been failing for much longer than anyone is admitting.** I’d love to know why APH are now trying to deny I have heart failure at all, when it’s been identified by two of their consultants. It’s only very recently APH docs have come round to acknowledging that I do have COPD, despite it dating back to the mid 90s.

**I was diagnosed with the early stages of Cor Pulmonale (right ventricular enlargement as a side effect of COPD), in 1996, which also leads on to heart failure and death. This is what Wikipedia says:-

Cor pulmonale may lead to congestive heart failure (CHF), with worsening of respiration due to pulmonary edema, swelling of the legs due to peripheral edema and painful congestive hepatomegaly (enlargement of the liver due to tissue damage as explained in the Complications section). This situation requires diuretics (to decrease strain on the heart), sometimes nitrates (to improve blood flow), phosphodiesterase inhibitors such as sildenafil or tadalafil and occasionally inotropes (to improve heart contractility). CHF is a negative prognostic indicator in cor pulmonale.

But I digress – back to my incipient wheeliedom…

When I went into hospital, I improved over the first three weeks, before starting on a downward slide – I seem to be repeating that pattern at home. Aside from having put back half the 25kilos I lost – most round my sodding waist – I’m worse, physically than I was just a week ago. I won’t bore you with the details – already done that. 😉

The big problems are getting up when I’m sitting, and staying on my feet once I’m up – I’ve lost count of how many times I’ve almost fallen, save for the fact that my flat is tiny and there’s always something to grab on to, not to mention needing several bites at the standing up cherry every damn time. So, given that I’ve not even had the semblance of a social life since last September, I find I have enough money to buy a decent – and new – manual wheelchair.

Quickie Life Click to view full size. Back button to return.

It’s a Quickie Life,** a folder with fixed footrest hangers. The folding mechanism is supposed to get very close to replicating the characteristics of a rigid chair in use (i.e., minimum energy is wasted by frame flex, the curse of the folding wheelchair), while making it easier to store and transport.

**Or, depending on which page of the brochure you believe, a Quickie Easy Life. I suspect it depends on the market.

Naturally enough, it’s not as light as my titanium-framed, rigid, Quickie Ti,** but it’ll get the job done and, configured to suit me, comes in at a tad under £1,500 – cheap for  decent chair, though if you have the readies, you can easily take it to over £2,000. For example, while I’ve mostly emulated the colour scheme in the pic, my wheel rims and hubs, and the handrims, will be their natural colour, as to have black ones would add £187.92 to the cost. Really not worth it to indulge simple vanity. In fact, like most things aimed at the disability market, just not worth it. Period.

**The Quickie Ti has rather snug frame geometry, and my swollen legs will no longer fit.

There are a couple more issues to address, once I get my new chair and before I rejoin the heady social whirl (ha!). I need trousers with legs that will fit over my bulky dressings (no, trackie bottoms are not  an option – I do have standards!), as my current shorts and bandages are not something I’d wear to go out, and some sort of footwear too, as nothing I have, including socks, fits any longer – my size 9 feet are swollen to size 12.

First priority, though, is curing the cellulitis. On a bad day this draws fluid from the tissues of my legs and feet at around 3 litres a day, way beyond what absorbent dressings can cope with, and soaking my trousers from knee to hem.

Trust me, this is not a good look.

10 thoughts on “Wheeliedom is upon me…

  1. So sorry – especially about the pain and seepage:-( . Wheeliedom does indeed seem to be a good option. After all, the important thing is to be able to get around, whether using legs or wheels is of secondary importance, in the overall scheme of things. My view is that quality of life is all!! Go for it x

    • Gone for it – chair’s already ordered! Not sure yet how long delivery takes – it has to come from the factory, put together to my specification, so probably a couple of weeks.

      It’s a good way to get my upper body muscles back too. Hopefully . . .

  2. Hi Ron
    Hope the wheelchair works out for you. It looks pretty good. I would also like to find a lighter weight manual as my NHS one is a bit heavy for some of my carers and friends to lift. Unfortunately I am rather restricted by my requirements as I need a high back support coupled with elevating leg rests. This seems to eliminate the “proper” lightweight range.

    Regarding finding shoes, I have intermittent issues with bandages/extra socks/swollen feet and at one stage was buying shoes 2 to 3 sizes larger than my actual size to compensate,
    I then found a company called Cozy Feet which specialises in disability related shoes and socks. While not exactly the most trendy of ranges they do cater for this sort of problem and I now wear my own size shoes and socks again!
    My current shoes look “normal” but are extra wide and are fastened by a disguised velcro strap. This means that they always fit as I can adjust the shoe tightness according to how swollen my feet are on that particular day.
    It might be worth you having a look if you are struggling to find appropriate footwear (look for the extra roomy range).
    Hope it is helpful.

    • Hi Sarah,

      Quickie do half a dozen conventional chairs http://www.sunrisemedical.co.uk/Products/quickie-wheelchairs.aspx?producttype=manual Might be worth checking out the weight – almost anything is lighter than an NHS gas-pipe special! Be aware, though, that if the weight is shown as “from” that’s without wheels.

      Trouble is, lightweight chairs are pretty minimalist to keep the weight down – adding a high back and elevating legrests would lose much of the advantage. Not all of it, though.

      Many thanks for the Cozy Feet link, I’ll check them out. Problem at the moment is that I’m losing up to 3 litres a day from my right leg (weighed myself before and after a dressing change), which would wreck any footwear – that has to be stopped first, and it’s showing no sign so far that it’s going to. Crocs might be worth a look (plastic shoes – impervious to almost everything), if they come in larger/broader sizes.

    • Now, now . . .

      Check out Jane’s comment – she’s hit the nail on the head. Better to be on wheels than stuck in here – the only place I’ve been, other than this flat since September, is hospital. There has to be more, and if a chair can help with that, I’m happy (ish).

      Oh, and folks, Darcy’s not having a go at me!

  3. I was originally going to call this post “Wheeliedom is come upon me . . .” Then I thought, how many would think it was just poor English, and miss the reference entirely? Or just think I was pretentious? I’ve seen posts that have been cryptically titled sink without trace no matter what their merit.

    The reference, btw, was to Tennyson’s The Lady of Shalott:-

    Out flew the web and floated wide-
    The mirror crack’d from side to side;
    “The curse is come upon me,” cried
    The Lady of Shalott.

    What do you reckon?

  4. It’s great to read you being so positive about what it a crappy situation – To Freedom & the Great Outdoors! Hope your chair arrives soon xxx

  5. Having been a ‘wheelie’ for 20 years now, I have to say that being on wheels beats bein stuck in looking at four walls. Go for it!

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