Update 2023
I thought it was probably time for another update. This post is partly just to let everyone know I’m still around, but also to remind myself that things have improved after everything last year.
I thought it was probably time for another update. This post is partly just to let everyone know I’m still around, but also to remind myself that things have improved after everything last year.
So Where Am I Now? I’m back at home and spent all of yesterday playing Wolfenstein: The Old Blood with my cousin on my brand new 55 inch TV, and today I intend to take the dogs on a short walk. Although I can’t manage too long in my wheelchair it’s still a long way from being in a hospital bed, so swollen I could barely move, with four drips attached to canulas in both my ankles!
I hadn’t had an unplanned hospital stay in my entire adult life, I had hoped I would never need to be admitted in an emergency, unfortunately this has all changed.
Today I managed to lay in a bit which I really needed, the hospital is very quiet on weekends and everyone seems much more relaxed. After my obs and ECG I headed out to the museums, typically today it was several degrees colder than it has been so I was rather cold by the time Read more about Royal Brompton – Day 5[…]
I slept very well on the Nippy 3+ only turning a couple of times, I was awake for a bit between 4 and 5 or so but that’s pretty normal even at home.
It has been about eight years since I have been well enough to travel to see my consultant at the Royal Brompton, that time I had to travel in an ambulances due to severe panic attacks, it wasn’t a pleasant experience and when there it was just a quick sleep study and back home the next day.
I received this letter in June regarding my email correspondence with Wheelchair Services and Social Services, lets be clear I did not excessively email or phone them, probably 3 or 4 phone calls and 33 emails (a lot of which were confirming I had received an email) in about 105 days. As I was unhappy Read more about Wheelchair Services – Request for me to sign agreement on communication[…]
After a lot of wrangling my advocate from the Muscular Dystrophy Campaign managed to get Gloucestershire Wheelchair Services to consider giving me a wheelchair voucher, this was turned down originally as my “needs may change within five years”, this was based purely the Occupational Therapist’s and Rehab Engineer’s opinions, they have no medical training and Read more about Another Wheelchair Assessment[…]