(Authors Note: Though I am a 46 year old Disabled person- I am not expert on anything. I do not have a degree or fancy letters next to my name. I simply aim to look at my situation (specifically) with the humor intended.
That said, not one Disabled person is the same. We are all different and each one of us has needs that must be met and it sucks balls that in the year 2023 (almost 2024) we’re all still here fighting for our right to be seen and heard. To be given basic access to day to day life. I hope one day that changes. I truly do. But for now I hope you’ll enjoy this blog and laugh along with me)
This morning I woke up. Like every morning I hurt all over. My hurt seemed to be amplified . Radiating like some kind of modern day pain beacon. Come to think of it – if my pain becon made a noise – it would probably be ” Ow! Ow! Fuck! Ow! Ow! Fuck” but I digress …
After grabbing hold of Penelope for support ( And before you lot get some idea – please get your mind out of the gutter! There is no Horizontal Blanky Dance afoot in my abode! Not for lack of wanting to mind! It’s simply due to the fact that my body is no longer able to perform accordingly *ahem* due to things hurting way to much) Penelope is my trusty bed pole that I use to help me turn over onto my side while in bed and, to help me sit up and get the legs out and the feet on to the floor in the mornings.
Next, I grab Bert and Ernie . Burt and Ernie ( called so because they’re always together) my trusty el cheapo ‘got em from the Chemist’ crutches that I’ve had since Moby Dick was a tadpole ( My Father’s expression – Not mine. Although, Moby Dick was written in 1851.. which was inspired by a whale who died in 1838 -Which presumably was a Beluga Whale, which according to Google can live upto 50 years … means that technically speaking- and it’s one HECK of a stretch- Moby dick was legitimately a tadpole in the year 1788)
Anyway…
I use Burt and Ernie to help me go to the toilet. Depending on how difficult things are, Hubby may need to help me. I find that I am at my stiffest in the morning – So does my Husband funnily enough ( No… Not like that! Do we remember what I said about gutters?) and the two of us struggle to get me sorted before things get to the point of no return.
As a rule Bert and Ernie are my main mobility aids to help me get around the house. I have Henry Rollins in reserve ( another pair of rather expensive, sleek, black , slimline, lightweight crutches) – but they’re no good when I need to open a door or turn a light switch on and off – as they have no cuff around the arm for support.
I also have a sparkly blue walking stick that I’ve named ‘ The Doctor’ but I’ve not been able to use him for quite a few years. Now that i think about it – I’ve not used him since the very beginning of 2020. I hope to be able to use him again one day. He was always fun. He took over after Edna ( my pink walking stick) was retired after many years of use.
(There’s also ‘Bernard- Brown McBlack’ my four pronged walking aid – but we never really gelled or got on so he just kinda sits in a corner gathering dust.)
Thankfully I am not going anywhere today – but when I do I either take my red manual Wheelchair ( Bernard Barge-Ass) or Eleanor Wheelie
One of the things I have noticed since becoming reliant on mobility aids ( and people) for support is the way society tends to treat you. You’re either invisible (not seen) talked at or over ( not heard) and it infuriates me when people assume I’m stupid because I’m sitting in a wheelchair. ( I plan to write a whole other blog on that subject soon. You have been warned)
Whenever I do go out – I’m either with my Support Worker ( who can fit me, my Wheelchair and crutches in their car) or I require a Maxi Taxi ( shout out to Roy at 13cabs) to go somewhere. I am also the proud owner of a Taxi Card and a Companion Card – which makes travelling a hell of a lot easier.
Currently, it’s 11:33am . Hubby has gone out to do the weekly grocery shop (I’ve tagged along a few times in Eleanor. So far I’ve not crashed into anything LOL) When he gets home he’ll make us both lunch. After which he’ll have to help me shower.
Relax folks! It’s not as kinky as you think. ( Hello? Gutter HAHA) I know that when we Married we spoke our vows ” In sickness and in health” ” For better or worse” Yadda Yadda Yadda – but no where in there did it state that “When your Wife gets to her mid 40s she’ll be permanently disabled and you’ll be stuck washing her Foo-Foo McGoo for all eternity!” and honestly, the Man needs some kind of reward for doing it. (THE FOO-FOO- McGOO Award? Anyone?)
Not many Men would wash their wives Foo-Foo-McGoo I’d wager. He is a wonderful help to me, (despite his constant complaints to Management that his role in things was to remove me of my clothes …Anyway, never mind! The way we do our laundry is none your business! LOL!) so in that respect, I’m very lucky.
Thankfully, thanks to my new NDIS plan, which comes into effect in January next year – I’ll have Support Workers in to take over helping me shower – so that’ll be one less thing he’ll have to do – which will hopefully mean we’ll no longer have to get up at 4am every day and get some extra sleep!
We’ve got a quiet day planned ( at least in theory anyway Most of the time my Husband is running around like a blue arsed fly getting all the things done.) Tonight we’ll have dinner, then watch another episode of LOKI -Se 2- while I sit with my feet on Mr. Wilson – The mean, green, peeing machine – for 30 minutes so I can work on improving the circulation in my legs.
Now, because I know you’re going to ask – Mr Wilson is my Revitive machine. It’s a Circular Disk that you can put your feet on and it sends electric currents up through your legs ( which are at a 30 degree angle mind) in order to stimulate circulation and stop your legs and feet from swelling. I got it on the advice of my Physiotherapist who suggested it might help and so far, he’s right. It certainly hasn’t solved all of my problems – but it has helped. The only drawback is that the electric current tap dances like Fred Astaire across your bladder and *Surprise!* You need to Pee! Hence my name for it.
You know, I had started out with wanting to write this blog with my thoughts regarding how I found Disabled Access to places and to start a discussion on whether it’s reasonable to discuss your needs with a venue or not – But this blog kinda went in a different direction and that’s OK .
I hope by reading this blog, people will have some understanding of what my day is like.
The other blogs will be happening over the coming weeks
Thanks for reading
Ceej
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