My experienced with Locked In Syndrome, and why I’m grateful.

A couple of nights ago, I was struck down with a bad dihorea and vomiting bug. This was especially bad news for me because I have Chronic Fatigue Syndrome and Fibromyalgia, and rely heavily on four doses of medication a day.

Acute dihorea led to acute dehydration. Add to this the fact that my medication was going straight through me, and that I couldn’t keep any food or water down, and you end up with me in a heap on the floor — literally.

I managed to text my mum ‘999’ before I went down. She came through my front door 20 mins later to find me crawling towards her. I couldn’t stand due to weakness and dizziness. She made me a bed on the floor with my son’s duvet as I was too weak to climb on to the sofa. This was when the Locked In Syndrome began.

I was freezing. I was shaking. I could hear but I could barely respond. My mother would ask me questions and I would hear my brain respond, but that is where the response ended. I soon realised that my body did not have the energy my brain required to send the information to the relevant body part that would enact the response. Now normally this would have freaked me out, but there was not even enough energy to process and experience the consequential emotions. My brain identified that these emotions should be happening, but the information stopped there. My brain was in a sealed bubble, unable to send out any information to my body. There was no WiFi or phone signal within me. The wireless network was not responding, and the ethernet cables were in the cupboard in my ankle, far away from where my brain could reach.

When the “rapid response” guy arrived 1 hour 40 mins after my mother had rang 999 (she informed me the day after as I was too out of it to remember much), he tried different stimulus including pain to entice a response from me. The pain sensation was felt in the body part (in this case my finger), and travelled through the network to my brain. This identified that the network was operational, but it was set to input only. I felt the pain but there was no energy to enact a response. This occurred again when a large IV needle was thrust into the top of my hand, and not even a flinch or an eye movement was seen by my ever-watchful mother.

My brain was screaming the correct responses to the questions the paramedic was asking my mother. Where are her meds? (In my bedside drawer) Has she been sick? (Yes, yes I have!) My poor mum was struggling to answer all the questions and find all the information he asked for. Normally, I would have felt so sorry for her, but of course my emotions were turned off. If my brain was a person, I think her head would have been firmly planted into the desk, banging it repeatedly.

An hour later, and I had been brought to the Accident and Emergency unit via an ambulance. The IV of rehydration fluids was magical and just what my brain needed. Slowly the network’s output flow began to open again. First came words, which surprised me, as I expected the surpressed emotions to flood over me. Then came HUNGER and THIRST. Slowly, like a flaccid flower, I began to plump up and unfurl, coming back to life. The dust I felt within my limbs was cleared by the fluids, and I was able to finally answer all the questions my mother had been asked.

My mother was amazing. I’m so lucky to have her.

So, this was my short experience of Locked In Syndrome. It had completely reaffirmed my decision that if I am ever unfortunate enough to become a vegetable, then the plug should be pulled. Living Will updated.

This experience has also taught me to drink lots and lots and LOTS of water.

It has also driven home to me just how fragile my health is.

But more than anything, it showed me just how great the NHS is, and how lucky we are to have such an amazing service available to us 24/7. The doctors and nurses are incredible people: tired, demoralised but friendly and caring enough to help countless strangers get back to their once healthy states.

Be grateful for your health.

Be grateful for the NHS.

Be grateful for your family and friends who are there when you really need them.

Be grateful.

I know I am.


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