The pain got too bad
I woke up friday morning with the most painful headache once again. My body ached from all the seizures and I was in and out of consciousness alot. I dosed up on medication and managed to get dressed and downstairs. I didn’t know but mum had asked the taxi driver to come earlier to get me home and he did. He was there at 11am.
I didn’t want to go but I did. I wanted to be around my own hospitals and Drs because I knew i was in trouble. The pain was so bad I was literally crying like a baby… it rarely makes me cry as ive a huge pain tolerance. I said goodbye to linda which was horrible, I love her like my sister and we have become so close… i hated to leave on this note where i couldn’t say or articulate words properly. I got in the taxi, surrounded by my pillows and slept as much as i could as that was the only time the pain was at ease… I say slept yet you never really “sleep” when in cluster phase… I was half awake and could hear a few things and could feel the pain but had almost put myself in a coma state to make the pain less (if this makes sense – cluster heads will understand).
We arrived home and all i wanted was to get my pussycat magick back from cattery.
I was still in so much pain but wanted to make sure magick was ok first. We went to the cattery.. i called his name and I was surprised he jumped up immediately and came to the door and started meowing… in fact he was constantly meowing until i gave him a cuddle… it was the perfect reunion.
On the way home I said to mum, I think I need to go to the drs.. We dropped magick off and got him settled and went to the drs (injections in hand) although given them mum has not been trained to administer and I was in too much pain to focus and hold a steady hand. we got to the drs but I collapsed in the waiting area and had a seizure. I was taken to a room and I had several seizures within the 3 hour time span we were there. My own dr was there (not that I knew at the time) but she was happy she had seen what happens as had not ever seen seizure and cluster headache before. (great dr i have!!!).
I was given an injection but it didnt work so the dr gave me morphine. I was still having seizures but when the meds kicked in they slowed. i started regaining consciousness in between and i managed to sit up. we got home somehow.
This pretty much sums it up at the moment. In the last week I have been through so many emotions. Happiness at living life and enjoying things on Monday to totally down and in trouble for the rest of the week. Yesterday I felt I was on the up again and today Im even further down than I’ve been all week. This time i feel I’m not mentally strong enough I’m loosing control of myself, my body, my worth I’m sitting here feeling like my heart and soul for life is not strong enough to battle this beast. I’ve felt this way before… Many years ago. I promised myself I wouldn’t go there again but it may be a promise I can’t keep. Even my promises to myself are empty.
Im loosing more and more confidence of my own body every day…. Wondering when and where it will let me down next. Always looking for somewhere to run and hide if I need to. The world being split in two… one that is the lovely world where I am normal and my mask protects me from everything and then the real world… where my mask is just a face I put on and sometimes this will fail like today.
I am made to feel that this is something I have done wrong, something that I am making happen. Its not – I know but sometimes it feels like I’m brainwashed by the end of the day to believe that the beast is here for a reason, I have done something bad and I am being punished with having epilepsy. I get minutes where I think Its not my fault but then he will say something and Its my fault again, and I believe it.
I am “ruining the family” (his words not mine). I have “split the family – made his life bad and he doesnt have a life” ?
Well I know in reality that this is not true.. He definitely has a better life than I do… at least grumpy has had 67 years of good health, friends, travel, two marriages – three children. Not that he has made right decisions or valued any of the above but he has had the chance to do this.
I am 26 – had two serious partners one ended quite abusive and was apparently my fault again because of epilepsy and the other just couldn’t cope with me not being able to do things all the time because Id had a seizure that morning and couldn’t walk round the city that afternoon. I probably will never have children due to the pure amount of medication Ive been on since age 4. One Dr even sat me down and severely told me not to get pregnant.
As for travel and just life well I had plans, they got eaten by epilepsy. Career? I had one…. That got eaten too. Friends? well I have some awesome friends but many have left because Im probably not the friend that they want – I cant go nightclubbing, drinking till pissed and all that stuff…. In fact Ive not been in a nightclub.
So as for not having a life… maybe he should think again because from where I am right now I would love that life. Not only has he had one but he is now waited on hand and foot by a wife who despite all the shit she gets from him with nothing in return – not even just a civil conversation or thank you.
Im not going crazy but I do feel depressed. Depression hurts, Its a pain deep inside the body, heart and stomach. It affects everything – I will stay strong.
Remember I love you all and appreciate everything.