May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.
Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.
The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.
I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).
My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.
Why do they suddenly decide to fail, without warning??
This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.
Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!
Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.
Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!
I will persevere and hope for the best, while maintaining realistic expectations.
On a happier note, May provided some space for myself, as my folks took a little staycation.
People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.
As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!
“Though she be but little, she is fierce”
~ William Shakespeare