International Day of Persons with Disabilities

or on being disabled

Today is International Day of Persons with Disabilities. 

As I mention being disabled in various bios and posts I thought it time to share the what’s what with me. Just in case you are wondering. 

It might be that if you are struggling in any way some of these might help you. 

I have on-going issues relating to my back, legs and feet. Earlier this year I had the spinal cord stimulator removed as it was causing an extra lot of problems. I have enough nonsense happening so definitely do not need bonus troubles from something meant to help. It had been in place for 2.5 years.  I am not dismissive of SCSs; for some people they are fantastic.

The difficulties have left me fairly disabled. I have pain, spasms, foot drop, arthritis in my back and knees, frequent numbness in both feet and lower legs plus incontinence. We tend not to discuss personal stuff because of embarrassment or maybe the perceived disgust. I think if we did it might help diminish the stress and anxiety that many people have if they become incapacitated. 

To celebrate the joy of sharing here is my list of some of my mobility aids:

Mick - the Husband. He can be called upon to pick something up if a grabber is not nearby,  plus: cook, clean, massage, ferry me about, lets me squeeze his arm to breaking point when my legs do not work, listens to my rants, shops, creates, works, buys me stuff and so on. If I write more it might sound gushy.

Family - my family are all amazing. They are kind, helpful while being ready to take the p**** at any opportunity. We laugh a lot. My grandsons are mega-kind. I was holding my eldest grandson, Vinnie's arm while we walked (waddled) up the garden and he said, “I’ve got you.” That statement says everything. 

Hypnosis, meditation - I use a variety of techniques to manage pain, sleep and other issues such as coming to terms with a different way of being and the grief of a changed life or the future expected life. 

Medications - I self-manage. I am not sure if this happens because it has been going on for such a long time or because my GP is trying to seek a quieter life. It saddens me when people are refused the medications that have been or might help them because a group of able bodied numpties think they know best. 

Why do I need meds if I use hypnosis I hear you ask? My way is complementary and health-enhancing. I have come to accept the trade-offs when using powerful prescription meds: I had to work on it and ranty rage often waits in the wings ready to burst from my potty mouth.  

Walking Sticks/Crutches/Smartcrutch - walking is challenging as I often can't feel my feet, my foot drop trips me or my foot stays put when I take a step and at any moment either of my legs can give way. This might result in a comedic stumble or a ground landing. On one of the crash landings I broke my arm. 

I discovered that 2 sticks is not necessarily better as I can still fall. I am safer with one stick and an arm.

Stair lift - Stairs have been challenging for a long time. It was painful with a, justified, risk of falling. Going up was a bit easier than coming down and it became a running (ha) joke with Mick saying, “Tell me when you want a stair-lift.” We did the Gremlins joke a lot and my daughter said how much the boys, my grandsons, would love it.

One afternoon I managed to get upstairs but the thought of going back down reduced me to tears. Big ugly snot-laden sobs of frustration. I asked Mick about a stair-lift. He found and bought one on Ebay. He had been researching while he waited for the moment to come. Two days later he went to the owner’s house to dismantle it, pack it in the car, bring it here and fit it. On that day he left here at 11am and at 3.30pm - exactly 48 hours after ‘losing it’ I floated up and then back down the stairs. This time with pretty tears of joy. And, yes the boys do love it. 

Grab handles - at the top of the stairs and by the loo.  

Shattaf - aka toilet shower or bidet spray. Personal hygiene is challenging when body parts do not work as they should. The spray is thermostatically controlled so no cold shocks to my nethers.

Shower stool - the stool means I can sit and not keel over when my feet 'disappear’.

Grabbers - if it goes on the floor it stays on the floor. Unless there is a grabber or, I have dropped the grabber.

Sock aid - for putting on tights or socks.

Supermarket trolleys - on the rare occasions I can manage to go shopping most of the supermarket trolleys are the perfect height for me to push and lean on. 

Table trolleys - If I need something I cannot always get up to get it so the table trolley has everything I need. I have one in the living room and one by the bed. Having them means I can write if I am sitting on the sofa or if I am in bed.

PIP - personal independence allowance that one can get (in the UK) if one can jump through enough burning hoops juggling running chainsaws. What that really means is you will be interrogated while you share the ghastly embarrassing challenges you face to a complete stranger who may or may not tick the correct boxes. It boils down to someone else deciding who is and who is not disabled.

Blue badge - my daughter, Charlie suggested this and as I get PIP I am entitled. 

Pool - bobbing around in water is a great help. To this end Mick contrived a pool in the garden - effectively a giant plastic bag and wooden steps with a side bannister to make getting in and out possible. It doubles as a perfect platform for those who like to jump in the water or step on to the ice in winter.

Door steps - smaller steps at the back and front doors make it easier and I am less likely to fall.

Heat pad - for warmth.

Ice pack - for cold.

Fans - to help cool pain flushes.

Pillows + pillow placement - regular, memory, long, triangle and wedge to use on chairs, under feet, in bed and in the car. 

Netflix - soul healing.

Disney - ditto.

BBC iplayer - ditto.

Prime - ditto.

Skillshare - an awesome site with courses from excellent teachers.

Crafts - I am limited as sitting is challenging but I do bits when I can.

Ipad pro - for drawing, games and pretending to be a professional. As in its name.

Espresso Machine - not really an aid but a requirement for sanity.

Drum kit - dance to rhythm of my own drum and like to belt out noise. Drumming is healing and soothing.

Alexa - when pressing buttons is too much. Or for random silliness. The boys managed to subscribe to farts.

Thank you for reading. I am happy to answers questions or offer advice x