It's 2020 and lockdown has been our way of life for so many weeks. However, my way of life hasn't changed; I have effectively been locked down for 4 years. Ib have not been able to leave my house for this period except for a a disastrous trip to SA, more about this later. Virtually, not understood fully by those around me I was struggling with depression and a feeling of hopelessness that death was eminent or incredibly close.
I am paralysed from the neck down. In 2016, a long term urinary tract infection started to move around my body. First signs were swelling. Puffy legs, ankles and skin. It was not long before this nasty infection (pseudomonas) started to fill my lungs with fluid. Then one morning I couldn't wake up.
This kicked off a period of instability with my health improving and dropping causing 3 separate stays in ICU. My final stay in ICU lasted for months and as I had weakened so much during this period; I was in no position to argue against the decision to operate and put a tracheotomy into my throat. I finally left ICU with a new care package and a ventilator for overnight use. Life became more difficult and monochrome. I didn't realise it but hope was leaking away and I found myself in a place where I couldn't think beyond surviving each day.
My isolation increased and I found speech became increasingly difficult I started getting low blood pressure durring the day, as low as 54/49. The biggest low came in September 2019 when I decided to have a trip to SA to see my parents and for my kids to join me for the visit. I picked up an infection on the flight, that nearly ended it. I spent the whole time just barely awake. I used all my tools to keep my chest clear and my exhausted carers were called upon to do the work I needed to keep me out of hospital (I was sure that I wouldn't survive in that case) so between my carers and the local GP we managed to clear it up to allow me to fly home a week after my scheduled date.
to be continued ...
