fifteen on Friday: people who make ‘snap’ decisions

Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!

They don’t know me like I do…

This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!

It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.

But you don’t look disabled!

If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.

‘My arm hurts a lot, cos I have cerebral palsy’

He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.

He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!

However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.

Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.

It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!

Fifteen on Friday: lunchtime

image shows tray laden with utensils and ingredients needed to make lunch
The image shows a wooden tray with a beanbag underneath and a sticky dycem mat (blue in colour) on the top of the tray. On the tray is a large container of butter, a tin of mushrooms in sauce, red spatula, metal butter knife, ring-top pull-roll handle (blue in colour) and a loaf of bakery bread

What’s so special about lunchtime?

At first glance, you may think my chosen topic a little odd… after all what does lunch have to do with a fifteen minute type-for-all, on disability? Given the effort this simple meal takes someone like me to make, and the resulting spasms, muscle contractions and exhaustion, the side effects of filling my tummy with food are severe. Take one day this week …

Shattered, and in pain, I trundled home from a five-minute journey to the village hall, picking my way over the bumps in the pavement so as not to jar my back, all the while scouting for various landmarks, crossing islands and sloping pavements that help me keep my bearings. Collapsing in my chair as I kicked the front door shut as hard as I could with my foot, I scanned various options in my mind while painfully tearing off scarf and coat.

First prize for effort?

Trying and failing to open a ring pull can of garlic mushrooms I had slapped on the counter, I grabbed the can and flipped it over, needing several goes before I could get the tin open and the side of the can to connect. Twisting it open, and scooping out the contents into a pan with help of trusty bendy spatula, I twisted on the heat. Unfortunately I had clapped eyes on that morning’s dishes, remembering the carer had run out of time. I eventually managed them in my own unique way rinsing off copious amounts of bubbles as I went, legs contracting with the effort of using my arms. Finally done (or so I thought) I grabbed and tipped the side of the basin with my good hand, pouring a third of it over my lap as I did so. Grabbing a tea towel, I mopped my lap, the sink and the sides of the units as best I could, throwing the tea towel in the wash basket, and turning my chair in the direction of the bread. Throwing two slices on my lap, I drove to the toaster and used a lot of effort reaching to place the bread and push the slider down the toaster. Bread only half in the toaster, I flipped it round as best I could to cook the other half, stirring the almost overcooked mixture as I went.

The end is nigh…

Grabbing a big plate from the draining rack, grateful not to have to try to stand and reach for one from the big cupboard above the over, I pushed myself up with all my might, clinging on to the unit at the side of me. Wobbling away, I grasped the toast and flipped it on the plate, near-falling as I did so. Shoving the plate on my knee and slapping it on the unit next to the butter, I liberally scooped and spread butter on my toast, the plate, and the unit, tipping the mushroom mixture on my plate with the spatula.

Ignoring the pan for now, I grabbed my beanbag tray, with handy dycem, slapped the plate on it, and balanced in precariously on my knee tipping it towards the floor as I did so. Tearing at chunks of toast with an adapted fork while steadying it with a sharp knife I eventually managed to eat my lunch, smearing it over the tray, my face, and my lap in the process.  Eating done, I repeated the dish doing, lap soaking process and drove straight for the lukewarm coffee I made at the beginning of the process, slugging it down gratefully.




New Directions : Introducing ‘Fifteen on Friday’

‘Fifteen on Friday’

I am relieved to be writing again after a hiatus of some weeks. Several times, I have begun posts but been unable to finish them. Often on a Friday I would look up the ‘Five Minute Friday’ prompt, write that, and then share it with others who have written on the same thing. However, I have written here for well over a year now save a couple of longer absences for illness I was unable to work through. Owing to another of these absences, it’s some weeks since I had an immensely helpful Skype chat with writer and blogger Robin Norgren about the direction she thinks this blog should be heading in.

Together, we came up with a plan, We decided, that as the ‘Five minute Friday’ prompts took me fifteen minutes to write the same length of text as other writers wrote in five, we came up with Fifteen on Friday, focusing on some aspect of life with a disability, with Lisa-Jo Baker’s blessing (the creator of ‘five-minute Friday). My first subject is one of my favourite hobbies, and one of my favourite ways to exercise save for horse-riding. It is a mix of swimming and physiotherapy exercises, hence the name hydrotherapy.

A snapshot captured in words: hydrotherapy

The air is still, and close, humid in fact. Those on the side-lines slowly swelter, though those who have luxury of the warm soothing water delight in its caress. The only sounds are of chatter, between those on the side-lines or those in the water, and sometimes between the two. There is one, however, who is perfectly still other than when disturbed by others around her. Still, though by no means emotionless …

Slowly, sore tired muscles begin to relax in the warmth, as joints old before their time are unusually buoyant, helped of course by two cylinder-shaped multi-coloured floats (‘noodles’).  Breaths become deeper, slowly exhaling the stress of the week, and inhaling the still warm air. Joy begins to seep in, from one pore to the other until eventually, all else is forgotten but the gentle rhythm of the water, allowing the person in the middle to bob gentle up and down, unfurling piece by piece. Sometimes, the air is punctuated by laughter.

The bit in the middle is the hard work, kicking, stretching, moving stiff joints, until the last five minutes are free to relax the same way as in the first five, floating gently and calmly… the last final gasp of warmth and joy. All too soon it is over, with just 20 minutes time allowed. Off for all the hassle of changing and the banter of lunch in the café before heading home to chores, errands and the day to day things. Until next time…