Philly's Level Access Home Fundraiser

Misplaced pride meant I wasn't going to post this until a charity worker pointed out that this is an indictment on the system, and not on the individual. It's nothing new, and it can (and does) happen to anybody. So, here's my problem:

I was diagnosed with Multiple Sclerosis on the 24th of June, 2016. Most people remember it as the day of the Brexit referendum result, but to me, it was just a piece of side news. The diagnosis itself wasn't really news, either - I was expecting it after years of sensory symptoms and fatigue. What I remember about that day was seeing the reaction of my loved ones. I'd put a lot of work into accepting the worst possibilities but naively forgot that my family may not be so prepared.

It's because I care for my family that I'm sucking up my pride and posting this today.

I have a relapsing-remitting type of MS, but in recent years (especially since a covid infection) it has become very aggressive. Right after my last relapse left me increasingly unable to walk, my landlord raised my rent by 35%, and I have had to move back across the country to live with my parents while I try to find a flat. Moving has left me in limbo with NHS appointments, and trying to find a ground-floor flat in Liverpool is extremely difficult.

My parents' home, although full of love and memories, is deeply inappropriate and dangerous. It has steep stairs in the front and back, and inside. The bath has high walls and I have had a few falls and hurt myself using it. I've been working on my physical health non-stop and go swimming whenever my body allows for it; they also have disabled shower facilities, so I can avoid injuring myself at home - if I can get there.

I have a wheelchair, but have had to get it on private finance with interest, and am paying roughly £200 a month for it. The NHS won't provide one, as the house does not have level access (a requirement for powerchairs due to weight). Fair enough, because getting my "lightweight" and "budget" powerchair in and out of the front door is painful, dangerous, and requires two people to do.

The urgent task of finding a ground floor, level access home has been near impossible. Deposits are rapidly approaching £1000, which is nearly impossible to save for given the current outgoings on the wheelchair (and not having a choice but to buy cheap stopgap fixes to my most dangerous moments). Accessible housing stock (council or otherwise) is essentially nonexistent in a way that worries me for the future of our ageing society. Even with the money in my pocket, it could take weeks or months to find somewhere suitable (even assuming that the landlord doesn't discriminate - something I have prior experience with on a couple of occasions).

Disability aids are also quite expensive, and there is seemingly no end to how many I find myself needing - even cheap aids cost a good deal of money and although there is some support, it is always very much "lowest bidder" and budget-constrained, which you have to wait months to even be assessed for.

The end result is that I'm essentially locked inside my parents' home all day, struggling to navigate it safely when the bathroom and kitchen are a figurative mountain apart, and getting out of bed is so hard - it's not uncommon for me to be stuck lying down for an hour or more because my limbs won't cooperate when I wake up or have a fall. I sometimes stumble and wonder if I'm about to end up hospitalised.

I expected to be helping my parents by now with their day-to-day, but we are all instead trapped in a situation where I am forced by circumstance to be cared for by them instead of living independently. I dream of being in the position to return their years of unrelenting support.

Costs to escape this situation are fairly scary and the price of living a normal life essentially has no ceiling, but here is a (very) incomplete list of some of the big costs to manage life (assuming my condition stabilises right now and forever):

I'm fine with a life of impairment. It has taught me so much about the world and the limitless good within humanity, to an extent I'd maybe never otherwise have known were I able-bodied. But seeing my illness (and how society treats the ill) hurt the very people that love me most is something I can't tolerate.

Thank you for reading this. I may not be able to easily pay people back, but I have so much I want to give to the world and this may be how that happens. Any donations, no matter how small, are honestly appreciated and will mean more to me and my family than we will ever be able to say.

Dolly also says thank you for the easier walks:

A NOTE ABOUT MONEY

Since this is asking for a lot, and I've already let my guard down enough to post this, I feel like I should be upfront about finances. The long and short of it is that I am forced to do this as the DWP owe me over £6000, possibly even double. A couple of years ago they were funny enough to declare me completely fit for work despite my being housebound at the time, and since then I've been waiting for an appeal, which got cancelled due to moving over to Universal Credit. Then, our buddy Covid happened, so... Same old story. It's been a considerable amount of time being stuck in an endless nightmare of a system trying to get it fixed, while dealing with poor health. The irony of the situation is, it was my asking for support in finding appropriate work while living with disability that shot me in the (already useless, lol) foot. Lesson learned, and with support I'm training to be a counsellor anyway.

THAT SAID, as I have been waiting on this money to essentially buy my way out of the Great British Disability Trap, I want to be clear that I'm not looking for a free ride. The only reason I'm doing this is that I feel utterly forced to. If (when) I get the money I'm owed, I'm going to give to The Brain Charity an equal amount as this fund raises. So if you donate to this, you can know that it's being paid forward to other people who also need help. So thank you again.

Or you can just go donate directly to them, they do great work: LINK