Yesterday was a big day!
It started with a pretty intense physio session at the hospital. Although Shakey McShakeface did his best to embarrassed me, I focused and stayed in “the zone” to work hard. The physiotherapist was impressed with my progress and informed me that I lost well over 40% of my total muscle just from that one hospital stay last summer! He also reminded me that I have forever to build this muscle back up, it’s a marathon not a sprint. And, although I often get frustrated as I feel my progress is too slow, he said that it will take my body at least 18 months to 2 years to recover from last summer so I’m only a quarter of the way in. And in that time I have put on over a third of my total body weight! I’ve gone from 38kg to 52kg!!! I know have a 6 week programme to work hard at building strength and co ordination to help my brain relearn the nerve pathways to my muscles and hopefully shake off Shakey McShakeface for good!
This session also marked a farewell to my dear friend Florence the Frame. I never could have imagined needing a frame in my 20s! But Flo helped me take those first few tentative steps all those months ago. She also gave me the freedom to make the 4 metres from the bed to the sofa with Norman the NJ and all the feed attatched. It is these simple tasks in life that are so easily taken for granted. As much as I was dead against starting my partnership with Flo, she gave me such confidence in my legs ability to hold me up and for that I am eternally grateful.
Next marked my first monthly blood test! Another thing I am so grateful for after having daily bloods for 6 weeks followed by weekly for the last 6 months. 4 weeks feels like ultimate freedom!
Another positive yesterday was my dear little girl Chip. Her bandage change yesterday took a while but the vet said it was doing better than expected! She was amazing and didn’t even cry despite seeing the pain on her face! She is my little hero!! I feel so lucky to have Chip and spirit who are my inspiration everyday.
Unfortunately I was in agony last night from physio. Pain relief and hot water bottles barely muffled Parasitic Pain’s screams. It feels like a step back……. until Grace reminds me……. no pain, no gain; right??
Battling Polyglandular Autoimmune Syndrome with Grace the Unicorn 