Recently, my health has succumbed to a bombardment of complications and deteriorations. EDS can cause issues with the brain and spine due to weak spinal ligaments which I started developing two years ago. However, the past six months have seen a sudden deterioration with these complications and day-to-day life has become much harder. Thankfully Mrs Wifey is amazing and now cares for me 24/7. I have been accepted onto the waiting list for an assistance dog which will make a huge difference to my independence and with surgery booked to replace my defunct bladder with ‘external plumbing’ I am hoping to see an improvement in my quality of life. My mobility has deteriorated rapidly due to serious balance issues, partial paralysis and general muscle weakness all caused by the brain/spine complications. I am attempting to raise £22k for a specialised powered wheelchair from Dragonmobility which will get me back into the forest and being part of the village community once again. You can find out more and get involved in my fundraising adventures on my new Wheelchair Fund Page.
As a result of my recent health issues my hospital appointments have doubled and my sofa time has tripled. Thankfully I have found a treatment that has helped greatly with my pain at night so I am sleeping better. I am very grateful that I am still able to write as my ability to keep working gives me the determination I need to fight what can be a bloody tough battle at times. I’m working from the sofa most days as it is more comfortable than working on my bed and it means Mrs Wifey can be at hand to help with moving me into different positions, picking up my pen that I drop every five minutes and boiling the kettle for much needed tea breaks. Sadly, I’ve not been able to get out as much as I would like. When you already have complex health issues, learning to navigate new symptoms along with adjusting to a new level of disability is exhausting. Not having a suitable wheelchair also makes it very difficult to get out now. Thankfully the back garden is sprouting all kinds of flowery goodness and I will tell you all about plans to make it Carrie-Friendly later.
So that is what has been happening and hopefully it makes sense why I have been AWOL since my last blogpost. I may not be able to post weekly for the time being but you can still keep up to date with general daily shenanigans on my Facebook page.