What would happen if you lost your independence? Imagine going to bed tonight all being well with your life, your family is happy and you have plans for the weekend to meet up with your dearest friends. Granted now isn’t the best time to ask you to imagine this but still. You get into bed with a smile on your face before drifting off to have a wonderful restful night. Your alarm goes off the next morning and straight away you feel the pain just trying to turn your alarm off feels like someone has hold of your arm adding extra weight, you try to sit up but you can’t and instead, you have to roll onto your side so that you can put your feet down on the floor. That and every single thing you do from now on needs someone to help you. That’s it your independence has gone.
Since my diagnosis, I needed help to do everything and physiologically that takes an effect. Yet the thing that affects me most of all is being pushed in a wheelchair. Relying on someone else is hard for many reasons but the one that I can’t get over is because of my weight. My Daughter is very slim so to have her push me is a struggle, each time she has to strain to turn or get up a kerb feels like a knife to the heart and yes that is my problem to deal with not hers. Putting someone else in pain and knowing that I cause her, My Baby Girl discomfort does make me upset.
It’s not just the discomfort I cause which is hard to deal, I put out others for me to be able to do something.
We all have bad days and everyone gets angry or upset, at times like that I would love to be able to be on my own. Privacy is something else you lose when you need constant help from others. I would love to be able to drive to the beach to clear my mind or calm down after an argument, instead my options are to cry in the shower or silently cry myself to sleep as Graham sleeps beside me.
The day I found out that I was getting a motorised wheelchair I could barely contain the excitement. I had daydreams of going into Liverpool shopping with my Daughter as an equal, no longer needing someone to push me around or ask them to slow down so I could have time to look at something on a shelf. I would dream of silly things like being able to use my card to pay at a cash desk or being able to look at things I wanted to look at and take my time doing it.
Husband & Wife dynamic changes a lot when they are now who you rely on for food or to get to the bathroom. The number of arguments we had over being pushed around in a wheelchair I lost count of a long time ago. See pushing a wheelchair or caring for you sick Wife doesn’t come with an instruction manual, it does come with lots of anger, arguments, resentment and tears, lots of tears. The Wife who used to plan a night out for 2 or you would join for drinks after a tough day in work, just can’t do any of that anymore. Instead, if you are out with work or meeting up with friends for drinks, your Wife now needs you home to help get her to the bathroom. What you had compared to what you now have is so different, your whole dynamic has changed.
More than anything when I got that motorised wheelchair I wanted to be able to take the dog out for a walk, go shopping with my daughter and I wanted to be able to hold my Husbands hand again. I had hope again, it wasn’t just a wheelchair that chair was giving me back my independence. I would be able to tell Becks to meet me in Liverpool to go shopping and instead of waiting for her to get the wheelchair out of the car, I would be able to do it myself. I could go to a different shop than her. I could do what I wanted instead of feeling as though I was putting someone out.
Unfortunately, I found out that the motorised wheelchair needed a wheelchair accessible vehicle. All of my hopes and dreams died again. Yes public transport could be an option but anytime I leave the house it’s like we prepare for a trip, we need hand splints as using the joystick to push the chair causes pain, medicine for pain as well as spray antihistamine. I need a coat in case I get cold, but I also need a cardigan in case I do get cold but not cold enough for a coat. Face masks, antibacterial hand spray, hand wipes. I always need a blanket in case I need to rest before we set off again in the car. I need earplugs and noise-cancelling ear defenders as too much noise can cause over stimulus which leads to pain. Glasses and sunglasses as I do need glasses but I don’t need them all the time, the sunglasses again for the over stimulus. Crutches for getting out of my wheelchair to go to the bathroom for instance. Unfortunately, this rules out public transport for me as my car has always been my fortress, if I need to rest and I am in a public setting it wouldn’t be possible. However, I would always be able to get to the car and rest without causing a commotion.
Yet going out to purchase a wheelchair accessible vehicle just isn’t on the cards financially right now.
All of the hope that came with the delivery of my motorised wheelchair, gone.
Don’t get me wrong it is a fantastic chair and it does make a huge difference but I wanted to be able to be a Wife and Mother again and the chair was going to give me the independence to do that, even if it was just in a little way. I have to somehow keep the thought of that inside me as losing that hope of my independence again would be too difficult to handle right now.
I hear a lot of people talk of manifesting dreams into a reality which is what I am going to do. Being able to be on Church St Liverpool with all the Christmas decorations, the smell of freshly baked doughnuts. I dream of one day soon picking up a wheelchair accessible vehicle something like a Ford or Volkswagen, it has to have 5 seats and a rear access door for my chair. We need it to be younger than my current 2010 Ford Focus and it needs to have enough room so we can fit a tent inside so we can go camping when the weather gets better. Visually I can see it, have to keep dreaming of being able to put the dog and my chair in the car to pick the Hubby up from work, then taking the dog down Southport Prom, holding hands with my Hubby again being able to be Husband & Wife. Meeting my Daughter to have a day shopping or going out for lunch would be absolute bliss and it is has been one of the things I have missed the most.
I have lost so much of me and so I dream of that car as it gives me hope with that hope comes the chance to have back a little of my independence.
Each time I write I hope that it helps others to understand what life is like with a chronic illness. If this is the first time to my page, Welcome. I have Severe Myalgic Encephalomyelitis which has left me completely bedridden, I am fully reliant on my Husband & Daughter to care for me.
Please share this and help me to raise awareness. Sending love and strength to you all, Alisha