The story of Lisa
I’ve got a rare disease . It’s rare because after 7 years, 5 neurologists and so many tests/ scans it still hasn’t got a name, just many possibles. The ‘beast’ part of my immune system is amazing at keeping coughs and colds at bay but for some reason it saw my 40 year old brain and thought, ‘Foreign invader?!! Lets launch a full scale attack’.
In the first few years it caused a lot of white matter damage and microbleeds and I am sure that stress and anxiety had a lot to do with it’s manifestation. Managing that, I feel was the best thing I’ve ever done for myself. I spent a long time in complete fear. I was told this was permanent brain damage and could well be progressive. I became completely aware of my mortality and the ultimate fear of cognitive decline. It was at my lowest point I discovered yoga, the 30 day course on YouTube and doing this half heartedly in the house in my pyjamas was the first step to feeling a little glimmer of light. Enough to pick myself up and find a new interest to research (something that didn’t involve neurological horror stories). Spring arrived and with a new optimism, I rediscovered reiki, breathing techniques and sertraline! More importantly, I discovered I was still alive and I still had my cognition. My following brain scan showed progression and a few more microbleeds but what was different about this one was my perception of everything. I was finally in control of my mind and my thoughts….. and just like that after 5 years, the full scale attack ceased.
The beast is finally sleeping and my brain is getting a rest.
I’ve had 2 relapse free years so far and I know I am so lucky not to be on hardcore immuno drugs right now; but I also know I can’t be complacent, so I continually need to make an effort to pacify the sleeping beast.