Saturday, March 26, 2016
Below is the letter I received about Burrswood hospital closing, as the letter means it's now public I thought I would share. Click on the image and then use the zoom button to read it clearly.
Such a shame it's closing its hospital wing as there is no where else like it.
Monday, March 21, 2016
Normally when I leave I do a short note saying a quick 'thank you for everything' but this time I wanted to write a longer one.
Thank you to...
For those who understand light and noise sensitivity is a symptom not a life style choice and who are so mindful of it when in my room. For leaving us during rest times and waiting until better times of day, a simple thing that makes such a difference and something you wouldn't get elsewhere. For 'getting' how we fluctuate and how we can do something fine one day and be unable to on another. For not judging us all by a diagnosis even if we share the diagnosis with, shall we say, 'interesting characters' (although I've known plenty of 'interesting' cancer or transplant patients and aren't used to judge others with the condition which so sadly happens in most other places to those with M.E).
When I had a big relapse here it was a huge shock as I had believed I wouldn't end up paralysed again. I had the best nurse, carer and doctor on that day and in Chapel House during some of the following weeks. It was a horrible time for both myself and my family but it was made easier for them knowing I was being so well looked after. If I had searched the world for a better team I couldn't of found one.
My stays at Burrswood haven't always been easy, by chance I was here when both my Grandmothers passed away, as well as the death of a very close friend after the hospital she was in refused to believe in M.E. Burrswood staff were so kind to me during the difficult times and Chaplin Sue even held a little service in the grounds for my friend.
There have been so many times staff have gone above and beyond or put the care in caring. The porter who unknown to me stayed after his shift so I could stay outside a bit longer, the staff who gave up breaks or stayed late to rescue my hair (not forgetting the beach find that resembled it), the cupcake brought in from home, painting my nails, attempted teaching of different languages (I still can't pronounce 'raincoat' in Polish but I can express 'bad hair day' should I ever be in South Africa), pictures of grandchildren or ice challenge videos, funny stories of pets and kids. Taking the extra time to select softer sheets that don't hurt my skin or the luxury of a hydro towel for every day use. For the endless wheaty heating and pillow arranging, these little things can make the biggest different to pain and comfort levels. These are some of the small things, other big things have formed special memories.
A picnic at the pond where the dragonflies were coming right up close and hovering just in front of us. A crazy wheelchair trip to the spring where I saw sunlight filter through trees for the first time in years. The night I couldn't sleep and was taken out onto the patio at 1am to look at the stars, it was so clear that night you could see thousands of them, the air was so cool and crisp and grounds completely silent. Not forgetting too the days when a frequent visitor was allowed to bring in her hamster and it would run around the bed making us all laugh
I've met some amazing people at Burrswood, meeting 2 people who would become some of my closest friends and some inspiring old people who are no longer here but leave an impact on you. Being allowed dinner in my room with another patient who was an old friend I hadn't seen for 10 years was very special and making new life long friends. Where else do you make a friend at Midnight in a corridor while seeking a wifi signal?!
Some of the staff mentioned in this are no longer here or rules were changed so these things can no longer happen but I wanted to say thank you for them. Thank you to every single member of staff who has gone that extra mile, to those who supported during the bad times and genuinely celebrated the breakthroughs and good times.