After spending 3 hours overall on the complicated and unpredictable procedure of self colonic irrigation, with all the risks of leaks and floods, i eventually got to the gym, where ive paused to write this.
Tonight I go with Pia to a gig in Alexandra Palace, which is quite a way from here.
Today, earlier I was questioned by someone as to ‘ did I really need that much help from a carer?’
I made a list of things I can’t do, as they very quickly occurred to me.
To go to a gig isn’t quite as easy as it sounds. For me, firstly I need someone there to help me at all times.
I have to carefully plan the route options. Today I looked at the train routes and then travelled by wheelchair to Hammersmith, to ask them if the station lifts in the various stations were working. On the way there my new Triride battery flew off and I almost crashed on a main road trying to avoid my own large battery in the road. A passer by stopped to pick it up and put it back on for me, or I couldn’t have done it…
Later I’ll meet Pia and get 3 trains, then a mile on the Triride on thé pavements after that. If it rains, I’ll get VERY wet. At the gig, I’ll rely totally on the help of others to do pretty much everything, and on the way back I’ll rely on the helpfulness of the London Underground staff and network.
My list then –
The whole point is that I NEED someone there all of the time
I can’t get into or out of bed.
I can’t wash myself.
I can’t get into or out of the flat, without someone opening the doors.
I can’t attach the Triride.
I can’t transfer to the ibot.
I can’t reach the battery charger to charge the ibot.
I can’t reach my feet to tie up the strap.
I can’t fix my regular punctures, and need someone to take the chair to the bike shop.
I can’t get in or out of the car.
I can’t travel alone on a bus or tube, as time and time again getting in and out of buses and trains involves a step.
Without live in help I’d have to get assistance at exactly the same times of day every day – I’d completely lose the right to wake later, or earlier, and come back later or earlier ? Is that how you run your life – to the same set times every day?
If I travel anywhere and want to stay, do I ask the host there to wash and dress me, and deal with my colostomy bag and irrigation system ?
If I drop something, I can’t reach the floor.
I can’t clean, as I can’t reach.
I can’t use toxic fluids for fear of tipping them over myself.
I can’t cut my toenails.
I can’t vacuum
I can’t wash windows.
I can’t carry shopping.
I can’t answer the door fast enough if someone comes, as it takes me ages!
I can’t reach things that are high up, or low down.
In the night, if I’m thirsty i can’t get water.
If my stoma bursts, or my catheter I’m covered in shit or piss, and totally unable to clean up.
If there’s a fire, I burn to death in my bed.
If I drop my phone, i can’t retrieve it.
I can’t charge my Triride.
I can’t put a coat on myself.
When I’m out I can’t open doors.
I can’t get into toilets.
I can’t speak to the driver on buses.
I can’t put xmas lights on trees.
I can’t hang my coat up
I can’t use the washing machine
Or tumble dryer
I can’t pump up my tires
I can’t get on the sofa or off
I can’t change my sheets
I can’t put on a duvet cover
I can’t iron
I can’t get into a bath or shower
I can’t transfer to my standing chair
I can’t carry drinks in a bar.
I can’t get through crowds, without emotional distress.
I can’t look behind me when I’m at crossings.
I can’t press the button at crossings, often.
I can’t empty my urine bag at gigs.
I can’t get my lights on and off my chair to charge them.
I can’t reach things in the fridge
I can’t change bulbs
I can’t decorate
I can’t garden and sweep up.
I can’t reach snails on the foliage
I can’t change the hosepipe
I can’t get into my arm bike
I can’t get into a Sitski
I can’t load a car
I can’t fill my car with petrol
I can’t get out if I break down
I can’t stop at a service station
I can’t get to the bin area here.
I can’t hang a picture
I can’t use a drill safely
I can’t carry hot drinks
I can’t put my legs onto a chair to stretch them.
I can’t massage my feet.
I can’t take my shoes off if my pee bag leaks over them
I can’t hold a nail and a hammer at the same time
I can’t get into most shops without help.
I can’t get a haircut without help.
I can’t reach lots of sockets to plug things in
I can’t lift anything heavy
I can’t put cream onto my own back.
I can’t reset the TV system
I can’t load DVD’s
I can’t reach into storage cupboards
I can’t take things up or down stairs.
I can’t carry things back from a school xmas fair.
I am a danger to myself with hot plates and fluids
I can’t change a Catheter in an emergency without someone calm assisting.
A carer can’t be just a regular person. A Carer needs to give up hér own life to be there to help me. They have to be qualified and be insured. If they mess up, then they can find themselves liable. They can’t have a social life, or stay out for the night in case I need them. They have to be contactable ALL of the time. They have to tolerate the frustration of the person that they care for, and not take things personally.
I can’t just rely on the generosity of others to live my life according to their occasional availability. For every hour that a mate helps me, my carer is there for 3-4 hours.
I read the list again an hour later, and I cried tears at my helplessness. To be like this, for me, is so incredibly dissatisfying. To be questioned as to whether I really need much assistance is just insensitive and demeaning.
Before my injury, if i thought I could do something myself, I wouldn’t dream of asking for help. Now, it’s hard to think of things that I CAN do independently.
But i make as little fuss as possible, and say thank you an awful lot.