Wheelchair woes

I think it’s Disability Awareness Month in the States. Or somewhere. And there’s a Disability History Month UK coming up in November and anyway, I’ve been ruminating on various things I learnt during the summer of 2015 courtesy of a broken ankle and 10 weeks of not being able to walk.

Wheelchair plus Pimms. One of the better moments.

Before anyone gets offended, these are examples of behaviours but by no means what everyone does. Luckily, for every person who doesn’t notice/care, there is usually at least one other who goes out of their way to be kind and make allowances. I’ve been treated amazingly by family and friends, and thanks to the joy of the NHS with very little expense on my part, so this is not a rant – more a way for me to capture some ways that we could all make life a little easier for those around us.
I’m hyper aware that these words describe only *my* personal experiences of only one particular kind of temporary disability-I only hope that this small epiphany makes me more able to understand and help the countless people who have much larger challenges that, unlike me, they may never escape.

1. Not being able to use your legs doesn’t mean your brain stops working. Suddenly finding that people talk to you like a child – or worse, not at all – is extremely disconcerting, and sometimes insulting. Sitting in a wheelchair also puts your head at a lower level than most other people, so do try to bend down to talk if you can, rather than look down and contribute to them feeling even more rubbish.
2. Using mobility aids often means losing the use of your arms too. Crutches need both hands, wheelchairs need wheeling along, knee scooters and the like all need other parts of the body to make more effort to make up for the one you’ve lost the use of. This means that getting anywhere, and especially carrying things is frankly, an utter shag. Having to hang things around your neck, constantly carry a rucksack just for your phone and keys, realising that a small oversight of leaving one thing upstairs could result in a 20 minute sweaty journey to get back there to collect it. Even making a cup of tea means planning where to put the cup, how to get the hot kettle & milk to the cup from opposite sides of the kitchen and how/if to bother trying to get the steaming cup back to the chair you want to sit in as opposed to just drinking it where you made it next to the kettle.
3. Wheelchairs can’t go down steps. No shit I hear you say, but when you’ve finally managed to drag yourself out of the house and you’re feeling chuffed wheeling along the pavement and find that the one place people park their cars/stop to natter/put their rubbish out is by the dropped kerb which is the ONLY place you can cross the road without wheeling into moving traffic at a level lower than car drivers can see you, it is f***ing infuriating.
4. Constantly having to ask for help is psychologically diminishing, so if you spot something before they have to ask-just do it, wink and smile, don’t wait for them to speak up
5. Everything needs planning part 1: Going to the bathroom from the bedroom in the morning – is there anything in the way that I’ll catch the crutches on, is the floor slippery, do I need my cast cover for the shower, does the loo roll need filling up, are there enough tampax in there… Every potential forgotten item is a long double trek back to where you started.
6. Everything needs planning part 2: Going out for the day-who is driving, is there room in the car for crutches/ wheelchair/ scooter, where will you park and can you use disabled bays even though you’re not permanently disabled. If you can’t, how will you get out of the car without bending your leg? Is the venue wheelchair friendly, are the paths gravel (Gravel. Bastard). Is there a disabled loo or have they locked it permanently because people trash it, or do they use it for storage of kitchen items? Can you get to the disabled loo past the stacked highchairs? If you get in, can you get back out again without opening the door or reversing over a small child who’s escaped their parents. Is the person you’re with patient enough to navigate this shit for you and not resent you for it, and are they strong enough to push you and your chair up a hill if that’s the only way to get somewhere.
7. Sitting in a wheelchair, being in pain, worrying if you’ll ever walk normally again, being constantly challenged by every day tasks is mentally, psychologically and physically exhausting. The person may be smiling when you see them; but you are not seeing the hours of tears, hundreds of painkillers, hearing the swearing and frustration, or counting the times they’ve actually wondered whether it’s worth going on at all.
8. You’re also not seeing the enormous amount of extra effort their nearest and dearest are having to make, or how awful it is to watch the person you love go through all of this.

Pop in and see them, but be sure to make your own cup of tea. Offer to grab things from the shops while you’re there. Don’t assume that once the patient is at home that things will get back to normal. They may never be the same again, or at least for a long while-the impact is both mental and physical, and may linger in ways you hadn’t imagined – for the patient and also their families.

My thank you letter sent to the local NHS

Hi there
I’d just like to say a massive thank you to Watford General, West Herts NHS, your A&E teams, orthopaedic surgeons, GPs, paramedics, ward nurses, radiologists, fracture clinic staff, physiotherapists, porters, cleaners and support staff for taking care of me over the last few weeks.
I fell badly and broke my ankle a few weeks ago, and my treatment has been efficient, friendly, effective (and free at the point of delivery, yay) and I have been treated with respect and dignity throughout.
I’ve never broken anything before, and the only times I’ve visited hospital for myself has been to be born and to give birth. Prior to the last few weeks I had little need and only a vague conceptual appreciation of the vast and complex workings involved in looking after a population’s health.
All I can now say is well done and thank you all.
I was relieved of pain, transported to A&E, seen within what seemed like barely any time, diagnosed, operated on the next day and looked after on the ward with the utmost of care and attention, and despatched home another day later with a plaster cast and a care plan (and seen again by an out of hours plus my own GP when I developed a possibly unrelated allergic reaction that made living with the plaster unbearable.)
Everyone has been welcoming and caring. Everyone has listened to me when I was in tears from pain, high on painkillers or frustrated by itching and immobility.
And everyone has wanted and helped me to get better.
It’s not over yet but I just wanted to express my heartfelt thanks for all that you and all the staff do all day. Ignore the papers. Ignore the politicians. The real people who need and use your services think you’re brilliant.

Please feel free to share this with the hospital, the trust and the NHS community in general. You rock.

Melanie Mack
Watford