Guillain Barre Syndrome – my experiences.
Breathing through the trachea was slowly getting easier during the day. The nurses made encouraging comments on my high blood oxygen saturation levels. This was used to determine my capacity to breathe properly. I was still wired to everything they had and occasionally I would move and a plug or connection would come adrift. This was accompanied by a loud beeping signal which was meant to alert the nurses. I think they got used to me being OK so the beepings went on longer and longer. Night time, however, was a different story. Lying on my back, asleep, allowed the trachea tube to get blocked very easily, and this then restricted the volume of air I could take in. The body has a natural reaction to this restriction. It tries to take more air in a short quick breath. This didn’t work though. All it did was to produce a loud rasping noise as the negative pressure in my lungs attempted to suck in a large amount of air in a short time through a mucus restricted airway. The effect was to block the airway even more. The next breath, attempting to rectify the further lack of air intake was even shorter. Panic… , Bang on the side of the bed. Nurse!…Suction! This cycle repeated itself several times before I realised that I needed to exercise some control. I forced myself to breathe deeply but very slowly. Each breath would take at least 10 seconds to complete. This way the total volume of air was high but the rate through the trachea was low. It worked. It did not build up so quickly and I managed to fall asleep. A useful side effect of this exercise was that my heart beat slowed and my blood pressure dropped.
It was while I was developing this ability that I became paranoid. The back of my left hand had been used as a tapping point all the time I was on life support. My body hadn’t taken too kindly to this with the result that the needle punctures had turned septic. My temperature had increased, I felt rough and feverish, and there was a residue of morphine in my system. This cocktail fired my imagination. On two consecutive nights I had horrible nightmares. In my dreams I was sure my recovery was being sabotaged. On both occasions my shallow breathing exercise saved me, or so I believed. By the third night the morphine had finally worn off, the antibiotics had started working, and my temperature dropped. I felt very guilty about having such ludicrous thoughts.
I also began to notice my visitors. At first this was very fleeting. My two daughters flew over, my sister-in-law and her husband, and other family members all made the effort and it is with regret that I cannot clearly remember their visits. The first visit that I can clearly remember, on the Thursday 1st February, is that of my son Stephen. When he came in I could only spend an hour in the chair before getting tired, but it was good to see him. One of lifes amazing coincidences was that he had studied Miller-Fisher Syndrome (MFS) as part of his degree in psychology. MFS was the very variant of Guillain-Barre Syndrome that I had contracted. He soon struck up a conversation with Dr Sweeney on the subject. I found it reassuring to know that someone in the family knew a little bit about my condition. The following weekend my stepson Mark came over. He had been looking after things back home, checking the house, speaking to my employer and our mutual clients, and generally supporting his mum and me. His calm efficiency was very comforting to me at a time when I was beginning to worry about things that had been left high and dry when I was taken ill. He also brought over a shoe box stuffed with small presents and things. Apparently, when details of my condition were announced to a stunned Lions Club meeting, the president had suggested a shoe box of small joke items would cheer me up. They ranged from the plastic spider, use this to get rid of any nasty bugs, to some very witty, if not slightly obscene, notes and cards. It was the perfect fillip. Mark stayed overnight with relatives and called in again, in the morning, on his way to the airport. We communicated, with me writing, and him speaking. The subject was almost exclusively business. I was getting better.
Later that day Ann drew up a calendar so that I could mark down the days. My grandson was being christened, in Ireland, on the 17th February, and I had resolved that I would be attending the christening, no matter what. We circled the date. Next morning, when Dr Sweeney was doing his rounds, he asked what the calendar was for. I explained, with pad and pencil, that the 17th was my grandsons christening and it was my target. He was non-committal. ‘we’ll see’ he said.
I was getting stronger each day now and I was beginning to feel a bit of a fraud. There were some very ill people in Intensive Care and very few spare beds for any emergencies. I wasn’t ill, in that sense. Don’t get me wrong I loved the care and attention and felt very secure, but I knew the better I got the closer I would be to leaving.