Guillain Barre Syndrome – my experiences.
Having had my eyes taped open yesterday seems to have resolved one problem. I now have some control over my eyelids. I can now open and close my eyes. At least I can open and close the right eye but the left eye now refuses to close. I have to manually use my index finger to gently pull the eyelid down. I don’t realise how this is going to affect me until later. I notice there is a sign on the door into my room indicating that special hygiene standards must now be observed. I am slowly becoming aware of where I am. My breathing is through the hole in my chest, the tracheotomy. I breath laboured and receive oxygen on demand. It is about this time that I start to be aware of the dreaded Suction!
For the lungs and throat to function normally they must be moist. The body has glands secreting a fluid that keeps these surfaces moist. Sometimes especially with the tracheotomy this moisture builds up. The effect is to make it difficult for me to breathe through the trachea. My breathing becomes even more laboured. It sounds like I am breathing through a blocked up tube, which is of course exactly right. The more the tube gets blocked up the harder it is for me to breathe. In a normal healthy person any excess moisture is expelled by a cough. I can’t cough, I haven’t yet re-learnt how to, so I have to have Suction!!! This involves placing a long thin tube down through the tracheotomy into my lungs. The opposite end of the tube is connected to a vacuum source and the result is that all the excess moisture is sucked out from my lungs and tubes. It is a standard procedure and there is a suction point in the wall beside all the beds in ICU for this very purpose. It is not painful, but it’s not very pleasant either, and it is sufficiently irritating to make you want to learn how to cough, quickly. Now here is a point that slowly dawns on me. I don’t know how to cough. I try exhaling as quick as I can. Nothing moves. So I then spend every opportunity during the rest of the day practising exhaling quickly until I am able to feel some of the excess fluid moving. I slowly get better at this. It isn’t a cough yet but it’s a start.
Being brought round after almost three weeks on life support is a slow process. In my case it took five or six days before I was truly aware of where I was and what was happening. It took a few days for my body, and perhaps more importantly my brain, to become morphine free. These days and nights were spent drifting in and out of a drugged stupor. I laid, on my back, in my bed, a special high tech anti ulcer jobbie, and let the days drift past. My only method of attracting a nurse, for Suction or toilet, was to bang my hand on the side rail of the bed. The staff soon got used to the sound, and would come running to see what I wanted. Make no mistake I was pampered in intensive care and when Dr Sweeney told me he would try to keep me there as long as he could, I was happy. Communication with the nurses and doctors was difficult. I developed a kind of sign language, as I could not utter a sound, let alone speak. I augmented this sign language with some very shaky writing on a pad kept close by. Double vision does not help with writing and I had a few problems holding the pencil and getting my hand to respond to my brain. My double vision, being angular, meant that I had to choose which pencil and which piece of paper, each separated by about 5 inches and at 30 degrees to each other. It was an interesting challenge! Ann collected each days writing efforts and dated them. The idea was that I would be able to review them when I got better (so she was optimistic as well). The nurses were wonderful and soon got used to this. Their patience with me was angelic. When I look back now at the pages of scribble I made, I am amazed that anyone could have deciphered them. My requests at this time were quite consistent anyway, suction or commode! It really was that basic.
As my awareness increased, I became a clock watcher. If I concentrated really hard I could just read the clock on the wall of my room. If I covered one eye with my hand, it became easier. My double vision was a bad as ever. I would wake quite early, checking the clock, and wait for the new shift of nurses to come on duty. The new nurses gave me a bed bath, and shave each morning. About 8.30, breakfast, which sometimes started whilst being shaved, consisted of a sort of oozing sensation through my left nostril as the liquid food was pumped into me through the ENG. (I don’t know what this stands for but it is a tube passed up through the nostril, down the back of your mouth and then down into your stomach. The outside end of the tube is connected to a bottle of liquid food.). Occasionally this liquid elixir would repeat on me, and I would get a sort of taste of it in my mouth. Ughhhh! As soon as the nurses had finished my ablutions I was whisked off of the bed and sat into a special bedside chair. I found this chair uncomfortable and too tight across my shoulders. I am not broad shouldered, and I hate to think what it must be like for someone larger. I learnt later that these chairs were intended for stroke victims who needed support. I could only spend a short time in the chair before it became too uncomfortable. When that happened I had just one option. Back onto the bed. I did not realise it at the time but this routine was all part of the treatment and was being monitored. Time spent in the chair was logged each day and reported to the doctors. So, it seemed my progress was being measured by how long I could sit. When I realised this I started making a special effort, and gradually increased the time. My stubborn, bloody mindness was focussed into getting better and back to normality, and though I had no idea how the chair business fitted into the scheme of things, I was determined to do everything I could to speed this.