wow its been a little while since i last posted but its been a bit manic. I had lots to sort out (paperwork ect) regarding my grandad passing and finally i have light at the end of the tunnel. We have also been preparing and decorating for nan coming to stay with us and have also spent a lot of our time staying with her until she comes with us because she hates being alone. Its been a busy time.
Well what new news do I have for you? Ive had a couple of hospital appointments, one about my cluster headaches and the medication and its side effects and them wanting me to go up on it if we can at the beginning of a cluster which then prompted them to do another EEG. I had that done and a week later was asked to go to cardiology at Kent and Canterbury hospital. Which i did. they are wanting to put me on a 24hour heart monitor so we are waiting back on that – my heart rate is pretty low (about 40) and I’ve been getting chest pains so its another waiting game. The problem with health and medications is one thing effects the other and its a vicious circle. Im starting to think there is no end, no winning, its not living life its just surviving it as long as possible. How long that will be is not our decision.
ok !Yes I’ve been feeling a bit depressed lately its just another side effect of this circle I’m in. It really hit me when mum was talking and mentioned she is scared of loosing me and has started thinking about my funeral ! yeah charming you may think but the things that she thought of were better than i could and have planned. it is a reality though as we have been told by people but its life. I don’t think of that (well not all the time anyway).
Im not really sure what to do next either. Ive started up the charity and theres lots of work going on there. Its a hard job to do but so worth it.
please visit www.teamjo-epilepsy.org