Last night was another night spent staying over at a friends house who very luckily lives very close to where I work.Yet again I had seizures while I was in work ending up in the medical centre on campus. I took two doses of my rescue meds Clobazam and still went on to have a seizure :( it scares me that they are getting longer.
After my recent job review I am no longer allowed to be alone on campus at any time and I must work where there are plenty of people around me. I like my own space and it's very hard to concentrate on my job when there are people chatting all around me. But the thing that bothers me the most is knowing that inevitable some poor unsuspecting person is going to have to deal with a situation involving a seizing me. Yesterday it was one of the other interns who has been helping me with researching as of course I'm a little behind due to increased seizures etc. She dealt with it very well though (not that I would have assumed any different) and I'm so very thankful <3 I told her I was getting warning signs which is a tingling in my forehead which builds up. We got to the medical centre where I lay on the bed with said intern/friend sitting watching over me with the nurse. We all just sat and chatted with me in and out of it trying to act "normal" if that makes sense. My other friend who is more than used to my wobbly ways came and met us there and we stayed chatting until I finally seized that horrible feeling out of my system. At first I used to find it very embarrassing knowing I was going to seize in front of people I know but nowadays I value the support and knowing someone is there when I come out of the seizure/s a huge amount.
It's a very good job I carry extra meds with me at all times along with my rescues meds Clobazam. I keep them all together in a handy little medicine bag I purchased from Medpac a little company who specialise in providing cases, bracelets and cards for those how need someone to be aware of their specific medical needs. I would highly recommend them to anyone! They come in varying sizes so suit different needs :)
I'm so lucky to have such supporting people around me.
I know I'm not your mother but I continue to worry about you. My own chick comes back from uni next week so maybe I will resume worrying about him!
ReplyDeleteI know you have a new neurologist, but you probably only seem to him every six months or so. When my son was as sick as you he was either in hospital or being seen by his neurologist every 1 to 2 weeks. Have you spoken to your GP about being referred to the William Gowers Centre at Chalfont St Peter - part of the Epilepsy Society complex? This is a tertiary centre that specialises in refractory epilepsy where they will spend prolonged periods of time to try and get the medicines right and then monitor you. This is the link. http://www.epilepsysociety.org.uk/WhatWeDo/Treatmentandfacilities/SirWilliamGowersCentre
Best wishes to you.
Aww thank you that's so lovely! I hope uni is going well for him!
DeleteThanks for the info that's brilliant :)
They have me all set for an EEG on Tuesday, CT Head the week following and I'm on the (very long) waiting list for a 5-day VEEG admission so someones looking out for me :D It's just the waits are so very long. I'm in direct contact with the Epilepsy unit here and the nurses and luckily my consultant is very quick with replying and sorting extra meds out etc. I don't think there's all that much they can do for me at the moment until they find out more about the damage I have etc :(
I have to admit I'm finding it very hard at the moment (much harder than usual) but just have to keep on going.
Hope you're well yourself :) xx
I'm glad to hear things are happening. Good luck with all the tests and I hope they bring some clarity. The next few weeks my son has to do all his medical appointments but then he can enjoy a leisurely holiday.
ReplyDeleteMust check the washing machine is fully functioning - it will be working overtime.