It Takes Time To Be Disabled

I was having a nightmare with my repeat prescription the other week. Who am I kidding, I have a problem with prescriptions most weeks. But this particular problem had taken an email, a phone call with a doctor, a couple of phone calls with the pharmacy, a visit to the pharmacy, missing items, another visit to the pharmacy, still a missing item, a phone call to the pharmacy, an email to the doctors surgery and another trip to the pharmacy. All within a week.

A previous issue involved phoning around multiple pharmacies to find one that could get hold of two of my items. Eventually finding them in a different town.

This led me to consider how much time I actually spend (I would say waste, but I kinda need all things mentioned to keep alive) on being disabled. Ok, so I’m disabled my whole life, but you know, the managing of that.

All disabilities and people differ, but this is what life with SMA involves.

Life Admin

That phrase has become quite a thing of late. Living in the 21st century involves such a busy schedule for everyone, that we need to take time out to process the things that enable life to happen. The bills, the forms, the shopping lists etc.

Well there’s a whole bunch more admin than that when you’re me.

Half the time of being disabled is proving just that. That I’m disabled, and therefore require or am entitled to such and such.

To start with there is the yearly care assessment, to prove that I need assistance to enable me to live an independent life. Well, to actually live. This involves a meeting and forms where I bare all and talk about my life as if I’m not really a human. More a string of movements and tasks. Justifying my every need, from requiring food, to having a wee.

There’s then the forms for proving I need access, seating requirements or a companion to attend the cinema or a gig with me.

Forms to receive a Blue Badge for parking, and a bus pass.

And don’t even get me started on PIP or ESA forms, and if I can lift a £1 coin.

As well as just trying to get on in life, I am also an employer, an admin assistant and a manager.

Employing Personal Assistants involves advertising, interviewing (no shows!), contracts, rotas, timesheets, holiday pay, training, sick cover and supervision. All of which I am not trained or paid to do.

Multitasking. Or not

Needing two hands to do most things means I’m not that great at multitasking. When I drink a cup of tea all I physically do is drink my cup of tea. I may be thinking and planning and working out my next adventure, or just merely watching the tv. But I can’t just grab a pen to jot down notes, answer an email or text, or flick through some paper work.

It takes quite a lot of concentration, balance and strength for me to undertake anything physical. And so, life’s admin and tea drinking do not happen together.

Daily Routine

Having SMA comes with its ‘extras’. The daily stuff like getting up, washed and dressed isn’t speedy when you can’t just jump straight from bed to shower.

There’s tubes to sort out, feed to stop, medication to take, a ventilator (BiPap) to take off or put on.

Getting from A to B requires a hoist and people, and having extra people involves chatting and time and directing and sometimes getting tied up in a jumper with your arm in the wrong hole. (I realise you don’t have to be disabled to possess this skill).

I recently got a new life enhancing gadget too. A Cough Assist. Which is a bit like being sucked out by a vacuum cleaner. There’s a mask that needs holding snuggly (extremely tightly) over my mouth and nose, the machine then pushes a load of air into my lungs and sucks it back out again as I try to synchronise my inhale and exhale to that of the Cough Assist. It’s really not as bad as it sounds, and could one day save my life by getting me through a nasty chest infection.

It’s another thing to add to the list of daily do’s.

Needing Assistance

The old saying ‘if you want something doing, do it yourself’ isn’t the case when you can’t. It’s also one of the biggest frustrations of living with SMA. Because the saying couldn’t be more true.

Telling someone how to do something or what you need doing takes time. When you can’t demonstrate how to undertake a task, such as styling my hair or setting up my latest craft project, articulating what needs doing with only words can be tricky. Especially when you’re as inarticulate as me. ‘See that bit of hair there… it goes there’ but without the ability to point.

Asking people to fetch stuff for me, that I can’t reach or get to, and they can’t see it, can turn into Chuckle Vision (don’t tell me you don’t remember Chuckle Vision?!). To me, to you. Up a bit, to the left.

Oh and when I can’t get near to said thing at all, so therefore cannot direct, and the fetcher can’t see it… There isn’t much in life more frustrating than that. Especially when it’s usually right in front of them and the next fetcher finds it straight away.

Relying on people for assistance can also mean following their schedule. Not meaning that people dictate the times I do stuff, but that I need someone to be here for when I want to. Shift times have to be organised, and so being spontaneous is rare. Not only for that reason.

Adventures

Being disabled, but specifically being a wheelchair user means that I meticulously plan almost everywhere I go. Particularly if I’ve never been there before.

It’s not as simple as just rocking up to a restaurant, theatre or event. I have to check if there’s access, are there steps, do they have a ramp, a lift, is there an accessible toilet. I’ll Google a venue first, but usually end up emailing or calling them because websites are vague and it’s not the norm to declare your door width and step height beside the instgrammable shots of delicious food.

Before I get as far as the theatre there’s the mission of securing tickets. Just like everything else, that’s not quick or straightforward when you’re a wheelchair user.

I can be a little slow paced, especially if there are cobblestones! But there always seems to be an obstacle in my path. I’ll just have fought with a pram coming in the opposite direction and be well on my way somewhere and then I’ll have to go 100 metres back on myself because either there’s no dropped curb, a car is parked over it or over the whole pavement meaning I can’t get through, or the pavement suddenly narrows out of nowhere and I have to drive backwards to get myself free again.

Also, I can’t run.

Fatigue

Is also a big thing. There are times when my fingers just won’t move well enough for me to type this post. Times when I just need to sit. When just being sociable via text uses enough energy. When eating my lunch has used up all my strength. When all I have the will to do is read. That might just be my mood actually. But that takes energy too.

I try to do things at a certain time of day. I craft in the mornings, read in the evenings. I prefer going out for lunch than dinner. There are no more all nighters and then uni the next day for me.

Waiting

At the pharmacy, the doctors, the hospital. For phone appointments, prescription deliveries and equipment servicing. For a bus with a vacant wheelchair space, for the one accessible toilet, and the single shop checkout wide enough for me to pass. For late people, busy people, slow people, people that never arrive. For a lift to the second floor or assistance onto a train, for someone to let me in the goods entrance because the main one where the regular people go has a step.

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