Disclaimer: I am not paid to post links to either Epilepsy Action or the National Autistic Society. The fact that I can create links to take people to sites that can offer the advice and support that they are looking for, and promote these wonderful, vital charities at the same time is payment enough.
The early hours of this morning saw me blogging about my experience at Broomfield Hospital A&E in Essex, England – and it was generally a positive (albeit frightening) one. One doctor might have improved his bedside manner, but I believe I can let him off because epilepsy was obviously not his field and he knew almost nothing about it.
Now I would like to explain the knock-on effects of when both my autistic and epileptic worlds collide.
Having a patient on a trolley who is in Status Epilepticus must be challenging enough for Britain’s fine NHS hospital staff. They have to literally think on their feet, or act quickly almost without having the time to think at all. I know what it is to be dealing with a medical emergency; I was a care assistant for some years.
Now imagine that your epileptic patient has recovered from their seizure, and you discover that they are also autistic.
When I emerge from a seizure I am confused and highly emotional already. I am disoriented, not always certain of where I am or what day/time it is and I sometimes speak without making any sense because my brain has swanned off somewhere far more pleasant than the inside of my head and has left my body behind.
How must it feel to be recovering from a seizure when you have the heightened senses, stimuli and emotions of the autistic mind?
Allow me to tell you.
It is terrifying.
I always, without fail, experience an autistic meltdown after a major seizure. I am already hyperventilating (consistant with experiencing a seizure) and I might fly into a panic attack almost as soon as I can think coherantly again.
In my particular case last night, I came around in a small room, attached to electrodes and a machine. The light was bright and there were people other than my husband by the trolley or coming in and out. I wanted all the people and needles and machines to go away so that I could go home, but instead there were too many needles, too many blood pressure checks, too much taking my temperature and complete strangers in my personal space.
So I had a meltdown. I shook and I flapped my hands and I cried and I begged to go home and I could hear all these sounds that nobody else could detect. All of this was too much stimulus for me and I lost it. Everything seemed to be brighter and louder and bigger than it probably really was, and all the different people talking and asking me questions sounded as though I was being shouted at in a deep cavern. All sounds seemed to merge into one huge, echoing clamour in my head and it physically hurts when that happens.
I fought the needles because I felt as though I was being attacked, I cried at all the staff, I cried all over D, and every time we were alone in the room I got off the trolley and told D we were going home because I needed desperately to be in a safe, familiar environment, sleeping in our familiar, welcoming bed.
I am 38 years old and usually a calm, collected, laid-back person (much of this calmness has been taught to me by D, who learned very quickly that I am an autistic with a temper and worked out how to calm me or even stop the meltdown in its tracks). Last night the staff may as well have been dealing with a frightened, sobbing ten-year-old, followed by a rebellious teenager. It’s as though I regress back in to myself and become a vulnerable little girl again.
When I was told that the hospital wanted to keep me in I demanded the release forms immediately. I cannot stay on a ward full of strange people without D nearby. I cannot stay anywhere without D nearby if I’m having a meltdown because this only serves to cause me further panic. If I’d had to I would have simply walked out and walked the three miles home in my dressing gown – I was past caring.
Fortunately a spell outside waiting for the taxi in the night air and a gentle breeze soothed me back to myself again – just a more achey, bruised and bandaged version than usual. By the time the lovely taxi driver arrived all I felt was tired and achey, and I slept like a log.
I post these links and I write about my neurological issues because I want people to learn and accept and understand. I want to be a voice for autism and epilepsy advocacy, and I want to educate. If I must have these issues, then I should use them to educate and support – let others know that they are not alone. I don’t want pity (although I very much appreciate the emotional support that I recieved from my last blog post) – I want education, knowledge, understanding and acceptance for everybody on this planet.
And yes; I am still venturing down to the WI tomorrow evening and we are still travelling to Cheltenham for the weekend. I wouldn’t miss my handsome boy’s 16th birthday for anything, and not even epilepsy and autism will keep me from him.