It has taken me a long time to face writing this: recently an infection put me back in hospital. Opposite someone with hemiplegic migraines.
They were under a regional specialist centre with a proper specialist consultant and were under a treatment team with multiple therapies. They were exactly where I am supposed to want to be, they followed the advice of every attack getting admitted.
It was horrific. The man was a shell, the ward was noisy and chaotic, and they had no idea how to treat him, worse, they were random and haphazard with his pain treatment, most of the time he curled facemask on, earphones in pain trying to make it through the day to his release.
He saw no treatment, he was pushing his family away as he failed to cope with the emotional effects of attacks, and each admission robbed him of days and weeks of his life, you could see him imprisoned by his “disease” and crippled by doing exactly what he was told to do. Exactly what I am supposed to do.
We spoke, he could not believe that my attacks were both longer and more debilitating, that I had no support in place, and that I was not being admitted like he was each attack. His disbelief crashed head first into the fact that, while we shared symptoms and experience, I had carried on doing life in direct defiance of medical advice and was doing well, and he, doing what he had been told, further down the road than me, was now virtually crippled and imprisoned by his condition.
We spoke only that afternoon, he left. I doubt he will change, he is embedded in being a patient and invested in the model where he would be saved by modern medicine. I don’t believe in white knights on unicorn’s, as a child I learned very early that it doesn’t matter how loud or how long you cry, how much it hurts, how bad it gets no one is coming to save you.
Perhaps then, out of the damage of those abuse years has come a useful toolkit for journey ahead