It's now the end of August 2020, it feels like the longest year ever to a lot of people, the year a pandemic took over our lives. I thought I'd update you all on my life in lockdown. The weekend before lockdown happened we were at our caravan in Cromer, opening it up for the summer season, I was still mobile so could get about the caravan relatively easily, we came home the day before lockdown obviously not wanting to be stranded in a caravan in Cromer for how ever many weeks this was going to last for!
5 months later and we are still living in a form of lockdown, although believe it or not sufferers of MND are not on the Governments list of extremely vulnerable, it is pretty obvious to us that me being exposed to the Coronavirus would result in a pretty deadly outcome. For instance if I had of contracted Covid during the early days when resources were stretched then I wouldn't have been given access to a ventilator, I've heard of fellow sufferers who received notification of this fact from their GP's, ventilators were saved for healthy people who have a good chance of survival, not terminally ill patients. That's quite hard to take and digest, that I'd probably be pretty much left to die, so with all that in mind that is why we are still living in a form of lock down.
Over the summer my MND has progressed, life may be at a standstill but MND marches on! The biggest change and challenge has been losing my ability to walk, I fell going up the stairs to bed and I fell the next day coming down, and suddenly although I suffered no injuries my legs just refused to hold me up and balance enough to walk. So on the hottest day in June, Lesley moved our bed downstairs into the dining room, I would never again go upstairs to our bedroom, that was quite and emotional day for me.
This disease is all about living and accepting the changes to your body, thankfully I can still stand so I now hang onto that function, being able to stand means I can (with help from Lesley) transfer from the chair to the wheelchair, I'm wheeled to the toilet, I'm wheeled to bed all made a ton easier as I can stand and transfer. The next stage will be when I can't stand, I will eventually lose all my core strength, then life really does become more difficult however we are prepared for this, maybe not mentally but we have the equipment in place. Falling down the stairs put be back on the Occupational Therapists radar, she visited and a mobile hoist was quickly delivered in preparation for when that day arrives. It's also handy if I fall as Lesley can use it to get me up and back in the chair, rather than call upon family members for help!
All this equipment fills our house, the monthly feed deliveries, boxes and boxes of high calorie drinks that go through my feeding tube keeping me alive, the bags of syringes, the different drugs I have during the day, drugs to thin the super sticky saliva that sticks in my throat and chokes me on daily basis, drugs to dry up the runny saliva that is a consequence of taking the drug that thins the sticky saliva, drugs to deal with the crippling depression and anxiety of living with such a debilitating terminal illness. Drugs to slow down the onslaught of MND, only one drug has ever been produced in all these years, it's supposed to give you 3 months more of life, in 70 plus years of research that is all they've come up with, I daren't stop taking it, my 3 months could be nearly up! Oh and anti sickness pills to combat the terrible nausea from taking a cocktail of drugs every day.
The end of July saw me celebrate my 56th birthday, I actually had a lovely day, I was taken off to a park and ride, we sat in the car while loads of driving instructors and family drove round wishing me a happy birthday, back home to watch everyone else eat my birthday cake and drink tea, happy days.
I think I mentioned before that I've planned my funeral, well during lockdown I've had more time to myself so I've written my own eulogy, hopefully you won't all get to listen to it just yet, I want to survive to the end of this pandemic so that more than 20 people can attend my funeral! I won't dwell on this subject but I want it to be a celebration of my life not all sadness and grief stricken.
As I say no to everything I've discovered that my wife does stuff behind my back now. A shiny new I Pad arrived in the post the other day, on loan apparently from the MNDA with access to an app I can use to 'talk' to people. If you recall I banked my voice in January 2019 as I knew one day I would lose it. I still have a voice but I struggle to form words so this app speaks for me, I type what I want to say and my old voice, although a little synthesised says it for me. Conversations can take time but bear with me while I type what I want to say.
I didn't want an electric wheelchair but I recently have been measured up and took an assessment in a demo chair. I'm pretty sure I didn't make that appointment, I now have to wait until one arrives in stock to fit my frame, I've told Lesley it can go in the garage when it arrives, although I think she has grand ideas of getting me out in it!
My biggest sadness is not being able to visit our caravan in Cromer. Losing my mobility has made it very hard to get round a holiday caravan with very narrow doorways.
We will soon be into September, the kids will be returning to school and hopefully some normality will enter all our lives. I'm probably going to continue with a degree of shielding, so family will continue to visit and talk to me though windows or conservatory doors.
Stay safe everyone..