Please help me get some of my life back

Hi, my name is Anne and I have started this GoFundMe page to help gain some sense of normality back for myself and my husband Phil after I had a life-changing injury.

On 20th June last year, I was in our bedroom when I felt a very strange feeling across the middle of my back. After a few seconds, I was in intense pain with a fierce tingling from my fingertips to my toes. I phoned 999 and was told an ambulance would be 6 hours. I phoned Phil and he rushed from work, arriving home about 30 mins later to find me on the floor, lying on my side, in agony and completely unable to use or feel my legs.

To cut a long story short I spent 5 months in 5 hospitals, the last being Stoke Mandeville. During this time, I had numerous blood tests, 4 MRIs, 2 CAT scans, 3 Lumbar Punctures, 2 nerve conduction tests and constant ASIA tests.

I was finally diagnosed after 7 desperate weeks of uncertainty as having had a Spinal Stroke plus a further stroke at my Conus Medullaris which caused severe damage to my spinal cord. Spinal Stokes are very rare, about 1% of all Strokes and a Conus Medullaris Stroke even rarer. Then came the news that I was now Paraplegic and the chances of me ever walking again were, at best, very slim or never. Having legs that don’t work plus the added issue that my bowel and bladder do not work is incredibly hard for us both to deal with, physically and mentally. The first of many tough changes we’ve had since receiving the diagnosis was to immediately cancel the flights we'd saved up to buy to Australia to see my son, who moved there in March 2020.

Those months in the hospital were relentless for me and my family. My Mum (who I'd last seen 4 days before my accident, healthy and sharp as a tack) had a fall 9 days after I was admitted. As time progressed I could hear the decline in her voice. On August 10th, she passed away in her sleep. I will always feel guilty and struggle with the fact that I could not visit her, it was the best I could do to organise the funeral from my hospital bed. At the same time as this my father, recently diagnosed with dementia, was also taken into hospital. We both had to have special hospital transport arranged for us to attend the funeral, one of the hardest moments in my life.

I finally came home at the end of November, where I have to sleep in a hospital bed in the dining room. I’m unable to get to the toilet or the shower. We looked for months for a bungalow but gave up trying as everything we looked at within our budget was far too small and unsuitable.

The expense of what I need for just a basic life is mind-blowing! I have used my savings to buy a lighter and more manoeuvrable wheelchair (£4,400) to make it easier for both of us, as I already have an issue with my right arm and Phil has a bad back; lifting a wheelchair in an out of a car is not ideal. This is the first step in getting back my identity back, but the list to help me achieve this is long and wildly expensive. These range from:-

* Equipment to help with simple daily tasks such as a slide board @ £36, suitable clothes and footwear (very hard to put on shoes and boots when your feet are floppy and refuse to help).

* Home improvements, which include the installation of a vertical lift to allow me to get upstairs (£27,000),

* A new electric roller garage door so that the lift can go in (£1,600)

* To be able to have a shower again the en-suite needs altering to a wet room (we’ve been told this could be in the region of £20,000 as it is upstairs).

* I am unable to get out of the house by myself, so I need permanent ramps built at the front and back doors. Not only is this so important to me for my independence, but I dread to think what would happen if there was an emergency and I was on my own!

* The garden needs a lot of work so I can get out there to do some gardening, which was previously something I was very passionate about.

* The kitchen will need altering so I can cook safely.

* I will need an electric 3rd wheel for my wheelchair at some point (approx. £3,500), so I can go for country walks again or navigate pavements in towns as they can be as treacherous as a field!

The harsh reality is that we simply cannot afford this. Phil had to give up work when I came home to look after me. Now that we know what I’m able to do at home he is looking for work for 2/3 days a week. At the moment, the only money coming in is the disability payments I get, which don’t cover the monthly bills.

I am so desperate and determined to be as independent as I can, and to do as much as I can, for as long as I can. I cannot be defined by my disability; I want to be me!

It would be so easy to ‘sit back’ and give up, but that is most definitely not me. I am 61 and don’t want to be the reason that we can’t do what we were hoping to do when we retire, which involved a lot of exploring on foot, in a car or by bike. We learnt to scuba dive a few years ago and I would love the chance to do that again!

taken on our last holiday in 2019 ..

caught thinking in the hospital

as I can feel no pain I hadn't realised my foot had been in this position for a few hours as I had been reading - not much else to do when you are bed bound for about 6 weeks.

photo of MRI scan showing the damage to my spinal cord that I sent to my family

keeping myself occupied

Mum and me a long time ago. I wish I could talk to her and tell her I am ok, it hurts so much that she passed away after having both hips operated on in 3 days, worrying about me. I should have been there with her.