I make no secret of the fact that I really like spending money and I’m actually really good at it too! One of the toxic traits of the UK banking system is that the minute you turn 18 you get letters coming through your door offering you credit cards and I’m too weak to say no. I always have been 🤣 so I ran up some sizeable debt when I was young and my mum bailed me out on more than one occasion, the last time I paid her back was thankfully nearly 15 years ago, but it was to the tune of £11K!! Ouch! Luckily since becoming a homeowner I have become a little bit more aware of my spending and reined it in a bit.

Becoming disabled kind of ruined my good intentions though because being disabled is fucking expensive. You might think that the NHS give you everything you need, but you’d be wrong. Now, you can get alternatives from the NHS, but they’re nowhere near as good and the features aren’t very effective and you have to wait months and months and months. A good example is my FES. Originally I was assessed at my local MS therapy centre and deemed a good candidate for an FES on account of my foot drop but then that has to go through the same referral process as any other referral so my physiotherapist sent off the paperwork and I waited around 10 weeks for the appointment to come through to go to Salisbury. I attended and it was agreed that I was a good candidate. I was furnished with an Ostock Medical FES (for free) to go home with and use. It was the same bit of kit that I’d had previously on loan from the MS therapy centre so I knew how to use it. I knew what to expect. However having it on a more permanent basis I realised that it wasn’t really suitable for my needs because I don’t wear shoes at home and in order to use the Odstock medical FES you have to have a shoe on so that you can place the pressure pad in the heel of your shoe. This is fundamental to the way it works. So I did some research and found that there was a wireless version available however it was only available for private purchase. For the small fee of £3250. Plus the cost of the appointments for assessment and for fitting. So we did some crowdfunding, bake sales for example and my sister and a friend of mine ran raffles and a very naughty anonymous donor, whom I still don’t know the identity of, topped it up so that I had enough money to purchase it.

That was my first “big” purchase related to my condition. Prior to that (and again since) I bought orthopaedic inner soles for my shoes, my walking sticks, ankle supports, a massage gun to relieve the spasticity in my legs etc you get the idea. Following on from that, my grandparents on my dad side passed away and I was left some money so I used that money to buy a wheelchair, as I wasn’t using a wheelchair full-time I didn’t spend a huge amount of money on it. It was only about £1000. Although she’s still going strong now. I also bought my mobility scooter which was a bargain because it was secondhand, so it was only a couple of hundred quid. Had I have had to buy that brand-new it would’ve been more like £3000. My mum very kindly bought me a Rollator which probably saved me about £150.

Then there’s the small stuff. So a blue parking badge from your local authority costs £10. and it’s only valid for the length of time that your current disability benefits are valid (for the vast majority of us, they have an end date 🙄 shame my condition doesn’t have an end date too!) Once that validity has expired then you have to renew your blue badge. And then there are prescriptions. Contrary to popular belief, we do not get free prescriptions. At the moment I have three prescriptions per month and at £9.65 per prescription that would be £28.95 per month or £347.40 a year. I now purchase a prepaid prescription certificate which is £114.50 so a decent saving but still money I have to pay, and considering I’m never gonna get better that’s an ongoing cost forEVER. The chances are I’ll probably get fucking worse and therefore need more prescriptions so it will pay dividends in the end I guess. Yay for me.

On top of the physical things I need there’s also the cost of treatments. Not medicinal treatments; what the NHS refer to as “complementary therapies” but they’re not fucking complimentary at all, they’re required. As I am secondary progressive in my diagnosis, physiotherapy is now not provided by the NHS so I obtain this service via my local MS therapy centre. They are a charity so the services they provide are at a vastly reduced price so each session only cost me £15. I do that weekly. I was also having oxygen therapy twice a month for another £15 a session. Altogether that was £90 a month. So I can’t really afford to add myself to the Massage rota as well, even though I really need it. The therapy centre provides so much more than just services though, they are a place that some people with MS go to and that is the only place they get to see other people so it is a vital resource (and if you have one near you, I’m sure they’d appreciate a donation!).

Don’t get me wrong, I am grateful for the NHS. I know in other countries I would have to pay insurance to cover medication costs as well otherwise they would be extortionate – well within the thousands if not hundreds of thousands! For example, the medication that I used to take (Ocrevus) is £65,000 per infusion (twice a year) which would be completely unrealistic for anybody to pay.

I’m also grateful for Motability. I am due to take delivery of my new car with adapted hand controls and a hoist for my wheelchair in the boot soon which will only cost me £2450 as a down payment and then the monthly payments come out of my disability benefits. Those monthly payments also cover insurance, breakdown, tax, MOT and servicing – which is a bloody good deal!

So as much as I said I like spending money, what I mean when I say that is that I like spending money on stuff that I WANT not stuff that I NEED. None of this stuff that I’ve had to buy is “for fun” and is a far cry from the copious amounts of beautiful shoes I used to buy back when I could wear them.  So I do still have some debt, but it’s manageable. It just stings a little bit that none of it is the result of me enjoying myself…