I've been wanting to write all week and have been chasing my tail everyday. Before I head out the door to Elveden, Center Parcs to do an access review for Disability Horizons; here's a quick check in.
I feel there's such a duality with my life right now. Being self employed with an infant business means I'm both busy and broke. On top of this my 'foundations need so much attention at present.
It's a never ending 'to-do' list:
- My wheelchair has still been juddering since doing the John o Groats trip last Autumn. Fortunately Invacare have agreed to replace the motors for free. Just waiting to go to my local mobility shop to replace them
- My Motability car has broken again. You may have seen me being towed by the police two weeks ago. Andy Kars have been stars as always. Apparently the fuel tank is corroded and needs 3 weeks. Again, luckily I have been given a 'courtesy' vehicle. I am unable to drive independently without hand controls, but I can at least be driven
- I'm also due a new Motability car. Therefore I've been completing more financial paperwork and attending assessments. It's looking like I'll use the same controls as on my current Kia, and have a VW Transporter
- Housing is becoming a problem since my Occupational Therapist said my bathroom isn't safe for my hoisting needs. Therefore I've been form filling with social housing options, and perusing the private sector options too. Finding an affordable place with 'roll-in shower' and no steps is like the proverbial needle in a haystack search
This world just wasn't built for wheelchair users.
- Care wise I'm relieved to have my Direct Payments signed off. However the ILF want to meet and discuss my needs again. This means even more form filling and meetings.
- Disability equipment update is I have a new hoist in my new Local Authority (LA) area. However the old LA are annoyed I used their equipment out of area, and are requiring sign off from upon high to collect their hoist
- Physically I'm feeling a bit weaker and have tighter joints. After 18 years old free physio and swimming is stopped. Therefore I'm meeting a Neuromuscular care expert next week to discuss options
I hope this doesn't come across unusually ranty for me. I guess it's been like a perfect storm of wintery lack of energy, multiple issues coming at once, and the general bureaucracy of being disabled.
Do you ever feel that government support is a blessing and a curse?
I couldn't live without my wheelchair, Motability car, social care budget, disability equipment and so on. Thank god it's available and improving!
However it comes at a cost. The constant form filling, meetings, judgement by panels, apprehension of budget cuts, and requirements/expectations to stay in your box.
It kills my creativity and leaves a constant underlying stress, with a sense of having less freedom.
Answers on a postcard please :-)
Fortunately once I clear these decks, things are looking up!
- I have a monthly retainer of marketing work with a company who adapt and service Motability cars
- I'm writing regularly for the Huffington Post and Indy Voices
- Following my presenter role with GeoCast tv in Birmingham I'm working on the same accessible tourism video in London soon
- Disability Horizons is flying with its edgy articles, growing community, amazing voluntary team, market research services, and much more
- Kasia and I just launched our health blog www.todaherbal.co.uk
Finally the travel plans are kicking in. There's the trip now to Center Parcs, then Japan end of February, and the Catalan in April. They're all about access, spreading the message and loving life.
Moral of this story is:
When times get rough, just stay tough, never give up, and soon you'll be happy enough!