So the year didn’t start well, a lack of care staff, being treated badly by people I thought were friends or at least cared about me, loss and things generally going badly in 2015. I made a decision to take control of things, sort out my health as best as possible
My final morning at the Royal Brompton hospital and return home.
I didn’t sleep great last night, it was cold and not particularly quiet on the ward, I woke at around 8am and didn’t see the point in going back to sleep so after my ECG and obs we headed out. Today we went to the Natural History Museum, it was a bit too cold to[…]
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[…]
Today was a lot less busy which I really needed, I was pretty shattered last night and today. I was up reasonably early as the Occupational Therapists were due at ten and I needed to be hoisted into my wheelchair before that. The Occupational Therapists didn’t take too long, they checked my position and gave[…]
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.
Royal Brompton – Day 2 Today I had a videoflouroscopy, my ventilator messed up and a mirror fell on my head cutting my nose
Day 1 of my 7 day stay, transport arrived on time and didn’t have any idea what their office was talking about when they said they’d arrive sometime between 1 and 3 for my 3 o’clock appointment.
A visit to the Royal Brompton for a sleep study and various other tests.
I have been struggling a bit with being in my chair, my chest has been achey when first getting up and I’ve been having to recline after a while as I come over feeling nauseous and like I may pass out, I needed this trip to prove to myself that I was still capable of going further than the local shops and that this wasn’t the symptom of something more serious.
A letter regarding my Duchenne Muscular Dystrophy Diagnosis, which failed to find any mutations in my gene sequence.