As explained in Part 1 of my story, it was like waking up inside my own coffin. I could feel, think, hear and see normally, but can move absolutely nothing. Even more frighteningly, imagine not being able to give a physical signal or blink to show that you are completely aware of yourself and your environment. I suffered a massive, sustained stress migraine, according to the junior doctor but ended in a huge brainstem stroke and ‘locked-in’ syndrome.
That was my hell at just 39 years of age in February 2010. Nine weeks in ICU unable to do anything. The indignity; the pain; the boredom; the anxiety; the fear of dying; the separation anxiety from my young children which almost destroyed my ‘fight’ completely. Not knowing the next time a therapist or nurse would ‘look into my eyes’ to see if I was trying to communicate something, which gave me so much chest pain, I wondered if it was a heart attack?
If only the medics knew how much I wanted to be back at home with my three children, to walk and run again. (I had been a 70-mile a week fell runner.) I was written-off, which spurred me to prove the negative-thinking, expectation-lowering medics wrong. My neuro physiotherapist was incredible and I will always thank her much for working so hard with me. I was a very challenging, rule-breaking patient like Marilyn Monroe famously once said, ‘If I’d observed the rules, I would never have gotten anywhere!’
Over 450 times, seven-days-a week as part of my rehab I would ‘will’ a different part of my body to move, move further and for longer than it had ever done. I was obsessed with my own predetermined daily, bite-sized goals. I allowed myself a 10-minute break after each set of 40 repetitive exercises. I did my exercises in addition to my three hours a day therapy sessions. This applied to my dysphagia, limb movements, swallow, speech, eating, walking upstairs etc. So absolutely everything!
In fact, therapists at my rehabilitation unit said that I pushed them harder than they pushed me. I was the ultimate self-management case study, even before it became an NHS buzz term! It was, in effect, Teasell’s repetitive, frequent and intensive approach put into practice. But I would also emphasise the need for early treatment (after my subsequent charity advocacy work). I could not always communicate my drivers, my needs, my goals, so friends and family needed to try to fill in the gaps on my behalf.