Dear Bug…I’m Missing
The day everything changed. The first time this happened was in 2006, where I entered total paralysis in my body. I did not get movement back until 2010. It was just one of my many body failures. The problem was at first I was too exhausted to move then I couldn’t move and then I couldn’t speak. My body was torturing me from the inside, riddling me in agony throughout every cell in my body, with exhaustion, pain and so much more. All the time.
During that time, my mind played a constant commentary of the day. Examples being: ‘I want to scratch that itch on the end of my nose’, ‘it’s taking ages to get my pain relief’, ‘isn’t that nurse’s hair fab, I want my hair like that’ and so on. The relief I got when finally my speech returned and then after more time my movement started to come back was incredible.
Fast forward to today and so much has changed for the better. Up until today, I hadn’t had paralysis for a long time… but you read it correctly… until today. It’s weird because I had put the frustration of what it’s actually like to be in that situation to the back of my mind. So when it did happen after a seizure, I was a) with Samuel, who had never seen this symptom and b) a bit freaked out because I could only move my eyes. I’ve had paralysis but not with the mixture of not being able to communicate and vice versa; I’ve lost speech but been able to move. The two together brings me to a real throwback Thursday (except it is Tuesday)!
Thankfully, I pulled through after nine hours of total paralysis and no speech. Normally it is longer but it hadn’t been that bad for a long time. It just brings back what so many of us go through without any understanding, or funding for biomedical research into the disease.
You see the thing is, I’m missing. From the society I want to be in, from the world I have always wanted to travel, from the life I want to lead. I am missing, because there is millions missing in funding for research. I am missing because Jeremy Hunt prefers to think of my disease as psychosomatic so puts funding into the PACE trial rather than finding a successful treatment or even better a cure.
At the weekend on 12th May, the world of sufferers and care givers came together and protested in many major cities. They protested for change. The shoes that were laid out before them, marked the millions missing due to this disease. Please listen to their voices.
I am so sorry you had such a frightening symptom, paralysis, for the first time in so long. I was very relieved to hear it only lasted 8 hours. But I’m sure you flashed-back to your four years in the hospital… Thank You for speaking at the #MillionsMissing rally in London. It’s obvious you did NOT have the energy for it. But you have such inner strength and a compassionate heart – we need funding to see current research find a cause and cure. You sacrificed your current health to help make that happen. You are loved and appreciated by all of us who are also bed-bound or house-bound. But I pray you will not have to make that sacrifice again. ???