Read this at your perilf but I am so angry and rattled that if I don't write it down I will explode. If it doesn’t make sense then blame it on the pesky Nurse.
Unfortunately, this morning I answered the phone mainly because 'he who knows all' had gone to a meeting for business men. That is by the by but he is normally the secretary of the household when he is here.
As soon as I said 'hello,' the caller pounced on me after establishing my identity and started on about my seizures, the ones well one to be precise because the others were hypo episodes. Following surgery, I had one, after 20 months without. The caller was the epilepsy nurse, who makes my hackles go up anyway so I was on the defensive straight away.
Apparently, she was asked to keep in touch with me to make sure I had not had any further seizures and I could not remember whether the real one I did have was before or after I saw the specialist. Now I think it was and he knows about that one anyway.
Anyway, she said that they were worried about me having a seizure and hurting myself during what she called a large seizure or even dying because of them being life threatening. Well, I gulped not for fear but I just did not know how to answer that remark.
I have had seizures since I was seven years old and have never, in all these years, killed or nearly killed myself. The only time that nearly did happen was after changing medication for the nth time. I was crossing a road and my legs would not work. I stood there on the spot and hoped the oncoming car would stop. Fortunately I was with company so they helped me across the road and we withdrew that medication.
It was annoying enough when she first rang me about six years ago to introduce herself and explain that she was there to help. I explained that I had been having seizures for forty odd years and coped quite nicely by myself. I don’t know what made me say that but it was something to do with her tone of voice and attitude. Theywere a new thing then, epilepsy nurses that is and it was a good thing for those who had only recently started having seizures and need reassuring but none of those applied. It was at the same time people, especially children, were being educated about epilepsy because at that time epilepsy was called the silent illness due to people not being aware of it until someone had a seizure in their presence. That in itself must have been a traumatic experience for anyone but one who was not aware of what was going on would have been more shocked. I know that from experience that not many people were aware of what was going on and they usually walked or looked away. That is by the by and it was becoming better known about which was good.
Anyway she never rang again until after I had had surgery. What she said to me then made me feel a total failure because it was about six weeks after the date of surgery that she rang. When I explained that I had not been able to go out or do much work or get around, she said that they expected me to be doing more than I actually was.
I asked her if she knew how to ease a stiff lower lumber region and she was surprised because no one had ever asked her that. She said that gentle exercise would help and thalasso-therapy would be excellent for the fact that water held your weight. Oh yes. Anyway, at that point I was not able to go out unaccompanied because of nearly passing out quite often when walking along. I am sure it was either to do with were they did a lumber puncture on my low lumber region or the fact that the CSF had not fully replenished itself. I did not say this to her and she rang off saying that she would be in touch again and maybe next time I might have done more. I did feel a total failure. It transpired that she had not read my notes saying that I had only been home about three weeks or so and that I had been kept in for 12 days more than was scheduled due to the leak and further surgery which again she knew nothing about. I later learned that she gave one of the people at the hospital a severe telling off for not letting her know the real health situation.
Needless to say she never did phone back again but instead got someone else to do it and this particular nurse was different again because she had herself had epilepsy surgery so knew what it felt like but she admitted that it had been nothing like my experience. That was fine and for 20 months I went happily without a seizure then had one which caused great concern and that is why the neurologist wanted to know if I had had any further episodes. I did have one and sent him an email to that effect also increased the medication as he advised and have been fine up to now apart from the real one I did have, oh that was after I saw him in late January.
She then went on to say that my seizures were bad ones and reiterated that they wanted to know whether I had anymore. She repeated herself saying that they were worried about my hurting myself and she went on and on and on. In the end I just said, “Would you excuse me please because I am in a little bit of a hurry. Thank you for ringing.” She was surprised and said OK and that she would be in touch again.
After putting the phone down I was shaking and I don’t know why I let her upset me. She is one of the few people and one of the very few things that seem to bother me now because most things don’t. I think what she was trying to do was make me go back onto the medication I had withdrawn from by frightening me about the lethalness of my seizures. I could have pointed out that every day we walked across the road in Goa I took my life in my hands because the roads are very dangerous there, and I mean dangerous. However, I refrained.
Oh another thing she ground on about was the fact that taking alternative remedies has only been anecdotally noted as causing seizures but has not been proven or nobody had discovered why some people do actually have them when taking alternative things, like Evening Primrose. I have never taken that and never will because the leaflet from the neurosurgical department stated that people could have break through seizures when they started taking Evening Primrose. Also I never took it before due to knowing it was contra-indicated in epilepsy. Well, I had taken something called Phosphatidyl Serrine prior to surgery which is a brain altering thing to stimulate people into thinking more clearly. It caused not problems before surgery but I stopped taking it after reading about certain things which could cause excess bleeding during surgery. Even Vitamin E can cause problems but I started taking that again two years ago. I don’t know why I did take the Phosphatidyl Serrine after having surgery but I knew I shouldn’t have done. It was after this point that the seizure occurred.
I pointed out that it was probably something to do with the seizure threshold decreasing, just like it does for those who start having seizures in later life. Even the neurologist could not say why people began having them later in life. The nurse totally poo-pooed this and by then I had had enough so I terminated the conversation.
I just hope she never rings me again because there is nothing she can do for me if I do have one. They cannot help physically like do an MRI or re-do brain surgery – perish the thought. So what will phoning me do to help. Oh stop moaning gal! I do have the intelligence to increase my current medication should that occur. Does she not realise that stress and trauma cause seizures! OHMMM.
I actually have absences and then pass out which has happened for 43 years and as I said that has not killed me. They are by no means life threatening because I have always been careful about what I do. Only twice have I nearly come a cropper through not taking care and they both involved motor bikes in Goa. One nearly ran into me but deigned to stop and the other brushed passed me because he just did not look where he was going, although neither was I. However,I had the right of way because he was coming off the main road and onto a side alley not meant for traffic. Had I not swivelled quickly I think he would have done some damage but not really kill me.
It must be reassuring to be told that you suffer with something life threatening if you are of a nervous disposition because let us face it the mind is a very strange thing and the power of suggestion is very strong.
Not to worry, I admit that I do not share her reality and it must be like when you have a psychic reading over the telephone where someone can read your future just by talking to you, so they must be able to read your aura or some such thing. It must be like that with the Nurse. Typing this has not made me feel totally better but at least the steam has ceased and I can smile because she would have had a blue wobbly had I told her which supplements I take and have been taking for the last 7 years (with no ill effects).
Ahhhhhh, OHMMMM.
