When I became disabled nearly three years ago now, the very last thing I thought about was money. I had suffered a catastrophic spontaneous fracture to my sacral bone (the bone at the base of the spine). This in itself was terrifying, but it then left nerve damage, which means my left hip/leg is in constant severe pain.
In many ways, the meaning of the word 'cost' to me is the 'cost' of losing my independence, my ability to walk, my hard-earned career and the 'cost' to my partner and family of my intense, chronic pain needing continuous care. But there is also a financial cost to being disabled that I never even thought about before, but that very quickly became apparent.
First of all was the loss of my income. I was the Head of Department for a six-member team in a large secondary school. My income was hard earned, but very welcome. I was very lucky.
But once I became ill, there was a slow decrease in my salary. Suddenly I was dependent on state benefits. That mean pulling in every purse string possible; every treat, every takeaway, every trip to the cinema. Everything that wasn't absolutely essential had to go. That all coincided with being told that the damage was permanent. So as the realisation about my disability increased, my income declined.
Then came the need to get a wheelchair to get around. I wasn't eligible for a wheelchair on the NHS, so I had to buy my own. I'm not able to use a manual wheelchair as bending over to touch the wheels causes me excruciating pain, so I needed to buy an electric scooter or a wheelchair.
As I am sure many people know, these don't come cheap, and they definitely don't come free! I managed to find one that was relatively comfortable and had enough battery life to actually have a day out without being stranded in the car park of B&Q (trust me, I've been there, it's no fun at all!).
Our old car simply wasn't big enough for my new chair, so we turned to Motability. The team there sorted us out with a much more appropriately-sized car, which included the best present EVER - a hoist for the chair!
This means that it can now be neatly and oh so cleverly lifted into the boot in one piece. We were thrilled - it was all our Christmases come at once! But, as usual, there was a cost. The upfront payment was fair for what we were getting, but it still was cold, hard cash that we had to scrape together.
We also need to make alterations to our home. Thankfully, the council came out to assess our needs and gave us two elevated toilet seats, four sofa raisers and a handrail, all for free.
But, we still need handrails at the front door, alterations to the bathroom so I can actually bathe (which is impossible at the moment) and a ramp at the back entrance so I can get down the steps into my garden.
With so many changes, and the fact that I cannot climb the stairs in our house, we now need to move to a bungalow, so the cost of that is yet to be factored in. Watch this space...
Projected cost: A LOT!
Hidden costs of being disabled
One of the 'hidden' costs I recently discovered is clothes. My old clothes no longer sit right when I'm sat in my wheelchair. My suits, which I lived in because of work, are too structured and uncomfortable to sit in all day, so I have shelved the majority of them.
Jeans with thick waistbands, long jackets and deep v-neck tops are all a no-no. Waistbands dig in, you're basically sat on a jacket and v-necks look totally different when sat down. Trust me, it's not ideal when you're in a supermarket queue and the man standing next to you has a literal bird's eye view of your cleavage!
Even buying new shoes is now tricky. All my old shoes had a heel (I'm only five foot three and a half inches) and they're not massively comfy when your feet are on the foot plates. So I've had to buy all new shoes. It may sound frivolous, but hell, I'm a woman, that's allowed!
Cost: £200? (approx.)
Another 'hidden' cost is the extra gas/electric you need when you're at home every day. The central heating, lights and TV are on for longer - it all adds up.
Cost: £50 a month (approx.)
Then there's transport. If my partner isn't available to ferry me around I have to pay taxi fares.
Cost: £150 a month (approx.)
All in all, I need a lot of extra cash than I hadn't bargained for. This, combined with a huge drop in income, equals a very stressed and anxious me.
I would love it if there was more help out there. The help the council offers seems to vary widely, depending on where you live. Any benefits I get are constantly being reassessed (or so it feels). My PIP benefit does help to counteract the extra costs, but very often is doesn't stretch far enough.
The stress that this all causes is one of the biggest costs.
It's costly in emotional terms, in physical terms and most obviously, financial terms. We all struggle to 'get by' as best as we can, disabled or not. But if you are disabled, there is a real need for more help to make all the adjustments needed to live life again.
But there are also some silver linings to this grey day.......
I now spend every day with my lovely partner and, whilst some would find that a real challenge, we have found that being together has helped us through these tricky times.
We love going to the theatre and cinema and my Hynt/CEA card gets my carer/partner in for free!
My Blue Badge gets me free parking and free travel over the Severn Bridge to visit my family, so that's a definite money saver!
My electric wheelchair enables me to beat my nieces in any race - that would never have happened before. It's a hilarious plus!
Previously published in Disability Horizons 29/05/17