I hope everyone is doing well. I myself am not in great form at the moment even though we got an email at work 2 weeks ago telling us that we have to use up our annual leave by 31st March. So I decided to take this week off. This decision coincided with the worst head cold I have ever had. Almost 2 weeks later, when I sneeze or cough, weird things are still coming out of me. My father did say that @if it’s anything like the dose your mother and I got before Christmas then you are going to feel out of sorts for a least 3 weeks”.
So then this also coincided with my annual review appointment with my consultant neurologist last week. One thing that I am super grateful to my parents for is that they put me on their health insurance and I go see him at the private hospital. I work at the public hospital and every one appears to have access to every ones medical notes and there’s enough about me over there as it is. Anyway I had seizures as a very small child. I was on medication until I was about 4 years old. Then I was taken off the medication and I didn’t have another seizure for years, not until my alcohol related ones. No cause was ever found for those childhood seizures but my current neurologist thinks I have a form of “Juvenile myoclonic epilepsy (JME), also known as Janz syndrome, is a fairly common form of idiopathic generalized epilepsy, representing 5-10% of all epilepsy cases. This disorder typically first manifests itself between the ages of 12 and 18 with brief episodes of involuntary muscle twitching occurring early in the morning. Most patients also have generalized seizures that affect the entire brain and many also have absence seizures. Genetic studies have demonstrated at least 6 loci for JME, 4 with known causative genes. Most of these genes are ion channels with the one non-ion channel gene having been shown to affect ion channel currents”. Please note that I took this information from Wikipedia.
Anyway he was like “you seem to be doing well since the last time. How would you feel about coming off the medication?” I told him I wasn’t sure as I’ve read all sorts about this medication and the withdrawal symptoms. He told me that I am actually on the lowest possible dose, so low that withdrawals probably won’t be an issue. But he said that as I seem so stable at present that he would prefer if I remained on it and that he would push my next review out to 18 months time. It felt very strange when the receptionist handed me an appointment card for August 2019. We could all be dead by then.
I also did wonder about the fact that I’ve been attending this consultant for years but he only mentioned the JME about a year or 2 ago.
Anyway the highlight of the last week is that I went on a bus trip to see a friend. Sometimes it’s just nice to know that some one cares, some one that I’m not related to or have not known for 30 years. And he is very sweet. He lets me sleep and brings me breakfast in bed. Although last time he was teasing me and said “sometimes you are so funny when you sleep because you have a bad dream and wake up and tell me “I had a bad dream, come here please” like I am miles away when I’m just lying right next to you”. So then I said “what do I do then”? He said “well I hug you and you go back to sleep almost instantly”. He did say something about he feels at his most peaceful with me and I am a very peaceful person to be with. I don’t know if this will last the distance but I’ve decided just to enjoy it at the moment and let the future take care of itself.
Oh I was actually on the bus last Friday night and looking forward to my week off and the bus had just pulled out of the station and then I realized that I forgot to send some urgent work emails. I have to send those or else the consultant I work for will have no patients to operate on next week. There might not be beds for the patients but they have to be booked in anyway. (I think this system is crazy but whatever.) So I’ll just pop in tomorrow or Friday and send the messages and leave again. I do kind of miss the place.
Hugs to all, Tetra
I’ll get around to reading the whole thread later xx