Guillain Barre Syndrome – my experiences.

By

David Russell

Page 4

Tuesday 8th January 2002
 

Here I was, wired up to just about everything they had. I had a tube through my left nostril for feeding, a tube through my mouth for breathing, a catheter, several drips, an ECG with pop on buttons all over my chest and abdomen, and probably more that I will never know about. I was receiving heavy doses of Morphine so pain was not an issue. My eyes were closed, I could not make a sound. I could squeeze hands thrust into mine, but this action was almost reflexive. My mind drifted. I would be aware one minute then unaware the next. I stayed in this condition for the next two and a half weeks. Friends and family came to visit. They sat with me. I cannot clearly remember them, but apparently we had some communication via the hand squeezing. Ann came in every day. She had to drive for up to one and a half hours each way through some of the worst weather Ireland can have, just to sit with me, holding my hand, noticing no change from the day before. It must have been terrible for her.

In contrast I was tripping about on Morphine. I have never thought of myself as having much of a powerful imagination. I’m not one to read and enjoy real fantasy books, although I have read the occasional science fiction book. If Morphine gives you the sort of images that are still vivid in my mind I suppose I can understand why some people can become addicted to it. I will not go into detail here, but to give you a flavour, I now know how to depict a Space Time Continuum chart and, perhaps even more important, how to use it. I also know that, sometime in our future, we will be able to go anywhere in the universe without leaving home. Don’t ask!

One of the interesting points made by Dr Sweeney and members of his entourage, to Ann, was that they expected me to be in their care for several months. So I think it came as a bit of a surprise to them when the results of blood tests, barely a couple of weeks after being admitted to ICU, indicated that I had responded dramatically to the Immuno Globens treatment. I have always been stubborn, or is it determined, you choose, and I think that attitude played a part. For instance I can distinctly remember rejecting a particularly fascinating hallucinogenic opportunity, in my Morphined state, because I wasn’t here to play games. I was here to get well.

Tuesday January 22nd 2002

I am moved to a small room inside ICU. I am still drugged up and being ventilated but they are now closely monitoring any breaths I can take for myself. I don’t know it, but I am being weaned off of the ventilator.

Wednesday January 23rd 2002

I am not aware that today is any different than the preceding 14 days. But the doctors have other ideas. Today I am going to be woken up. It has been decided that my good progress needs to be maintained and, as part of that, I should try to get some mobility into my limbs. In short I must walk. But I cannot leave the bed whilst being intubated. So before I can walk I have to receive a Tracheotomy, a hole in my upper chest/neck region, through which I can breathe and become independent of the ventilator.

I have breakfast, down the tube. Any colour you like and it all tastes the same. Yuk! I’m only vaguely aware of it. I am bed bathed and shaved so that I look, and more importantly smell more presentable. I lie there in my semi drugged state waiting for something to happen. Eventually the Physiotherapists arrive to take me for a walk. But wait we have a problem. My eyes are still closed tight and I have no control over my eyelids so I cannot open them. The solution is to use sticky tape to hold my eyelids permanently open. This is done and I am unplugged temporarily from all of the monitoring equipment and, carrying my catheter bag, I am grasped firmly by two female physiotherapists, one on each side, and marched down the centre of the ward. I know I managed it, I had no choice, but it really wasn’t walking. I was going through the motions while the two girls supported me. When I get back to my room everyone is delighted and congratulating me but it seems unreal. Ann is there and she tells me later she felt that my eyes, being permanently held open, were very disturbing. As far as I am concerned I didn’t really walk at all. OK, my feet and legs seemed to support me and one leg went off before the other but I was not in control. The actions were reflexive. But of course the object of the day was to start me down the road to recovery. The day was marked down as a milestone.