Geoff is a previous committee member and made a valuable contribution to the CVSA UK by fundraising and a lot of work producing our newsletters. He is the parent of a CVS sufferer, and following his own unhappy experience, he typically turned this around to reflect on the suffering on others.
Now I know! Or do I?
I had to have an operation on my back this year. This involved being on the operating table for about eight and a half hours, so therefore a high dose of general anaesthetic was required.
Well, when I woke up in the Intensive Care Unit feeling a little queasy I pondered whether I was going to get off lightly. Later on I woke up again and was asked if I felt like eating something. Much to my amazement I felt quite hungry and chose fish fingers and chips (no baked beans though) of which I managed to eat a small portion. Wow! I felt fine, no nausea!
The next day I was moved to another ward, where the food is reheated in some sort of steam unit. Probably as a result of the anaesthetic my sense of smell, which is already keen, seemed heightened. Instant nausea. I could not believe that food, could smell so strong and disgusting. Even visitors commented on how strong the smells were and how strange it was to cook or reheat food on the ward.
This set the scene for the next five days. Every time I smelled food or attempted to eat anything at the insistence of the staff and family, I was sick. The anaesthetic was obviously still in my system but was having a delayed reaction. I am sure that having to lie on my back all this time did not help either, as this cannot be good for your digestion. I was given anti emetics by injection, orally and worst of all suppositories. CVS sufferers will have of course gone through the indignity of this many times. Nothing seemed to work and events such as being taken to the X-ray Department in the bed would spark off a new round of vomiting.
After several days of this I started to feel weak, lethargic and somewhat strange, not really knowing what was going on around me (nothing unusual there then). Linda was becoming concerned as when she visited, every day, I would drift in and out of sleep and could not remember what had been said to me by the staff and also what I had been saying. Linda tried to encourage me to eat, first of all with jelly but I could not even keep a spoonful of this down. I must admit that I was also becoming worried, in my lucid moments, at how bad I was feeling. The constant nausea, lack of deep sleep and maybe the drugs (I was on strong painkillers) were making me feel anxious.
The nights seemed really long and I would lie on the bed and imagine some really strange things. For a couple of nights I was convinced I was in a futuristic hospital with beds arranged around a circular ward. It was like something out of a Star Trek film. On a couple of occasions I had quite bad involuntary movements of my hands, arms and legs. The first time was bad enough, being like an attack of the fidgets, but the second time was much worse and my movements were quite violent. It was not until a few months later whilst looking at Alison’s leaflet on ondansetron, which I had been given for the nausea, that I read that this can be a side effect, although unusual.
Anyway getting back to what I was trying to say. The repeated vomiting, lethargy, general weakness and anxiety were something I would not choose to go through again. Words cannot adequately express the way I was feeling physically and emotionally and I can now see how hard it is for sufferers to talk about their condition. Having said that I am also aware that this is not the only reason they are reluctant to talk about it. There is of course the fact of not wanting to accept that they have the condition, therefore not allowing it to become part of them. Whilst it is not a part of you, it can at some point be got rid of. (True or false?)
Even now I cannot fully understand what sufferers go through, not just when they are having an episode, but also during the “normal” times. I can tell you though that what I went through has given me some sort of understanding and that knowledge is not nice.