Saturday morning I woke up and the pain was yet again intense. I went straight into multiple seizures.
Drs say that Status epilepticus is the most dangerous state for epilepsy sufferes. It takes so many lives. A person with epilepsy may experiance this once or twice in their lifetime with the disease… So far Ive been in status over 20 times and now 3 times in 3 days. life is getting scary.
I ended up having the paramedic and ambulance out and remember waking up with a IV line in which is very unusual as people normally cant get a line in. I was in and out of seizures for over an hour and I woke up in Kent and Canterbury hospital. It felt safer to be at home hospital though. somehow I cant explain. When the seizures stopped I was taken to a ward and had to wait to make sure the meds were working. I was given lots of extra meds and then claire and her dad came to get us to bring us home.
I was supoesto do a gig that morning but obviousley had to cancel. However it was the ball tonight and I was not going to not go. I had determined face on! My friends were down and I had the dress, the tickets and the will power I was going to go.
My best friend Lara came round early and helped me get ready, she managed to turn my palor complection into a 1900’s lady! without her doing my hair and makeup i really dont think i would have got there it was exhausting and i wasnt doing anything. We were all ready I couldnt wear my heels as i was having issues anyway but my dress was so long no one could see my sandal flats ha ha.
We went to the ball and had a fab time… I done some dancing with mark and the girls and we all had a good time. we even had official pics taken. The night went on and i started getting hotter than normal. My eye kept watering. We had just been given an award for best costume and i needed to sit down.
I went and tried to find a seat, feeling weak and wobbly my head was pounding and i was all a bit blurred. I can remember Abi saying lets go outside and I felt cooler. I thought i started to recover a little and then that little sensation that I dread. I woke up on the grass. I can remember being told to squeeze hands and I think i did. i hope i did. Claire had honed pauline as arranged and we managed to get home. I knew I was in for trouble and I was right. That night when I got home and everyone had gone all hell broke loose and I was in so so much trouble. I just wanted to enjoy myself. I got the “you could have killed yourself for pushing it” well maybe i could but then If i dont do things im stuck indoors and then what is the point of living? none. Id rather die doing something I enjoy and love.
The morning of Jades Prom arrived. We had fat club in the morning (well I was visiting with Linda and Jade – before I get any of you curse me for trying to loose weight – IM NOT)
I woke up that morning knowing the day was going to be a struggle. I took my extra meds and kept my fingers crossed. I dont know how many seizures I had before we went that morning but I was close to a big one before we left I know. Thankfully It didnt happen.
We arrived at fat club and i recognised alot of faces from facebook and people Id spoken to via Linda. It was Lovely and really friendly.
There was a display going on and I took a look.
|2lbs of fat !
|jelly and cream (or a pint?)
One of the ladys whom I talk to on facebook Pat gave me some harribo… Linda and I were going to try vodka harribo at some point but these ones were to eat too. I had some hoping the sugar would help.
everyone was lovely.
During the meeting I started to struggle – I had to result to oxygen but it was running out. We got home and I felt my head start to feel really bad. I took pills, my oxygen and headed to the sofa for a rest.
Jade was due to have her hair done at 2pm. I wanted to document her prom for her… I had 1 hour to rest and get rid of this headache. Well I did rest but the headache didnt go.
The next few hours were preperation for jades prom. I took so many photos just of her hair being done..
I then went and rested and I really dont know for how long…. when the pain and strange feelings get to this point time passes that is all. I think I slept a little but I dont know.
Jade came down… I was awake and she looked stunning. I grabbed all the energy I could and my cameras and started snapping. We went outside and took some beautiful pictures and then I was honoured to travel to the prom with her… I took more pictures too. I was struggling the whole way but I love taking photos and it was Jades big day and she was so pretty.
When we got home however I dropped the camera and tried to edit some pics. In the end I had to resort to bed but I never got there. I went into status epilepticus and dont remember much I remember waking uo between a couple of seizures and Linda holding my hand, she will never know how much that helped. It was weird cos normally I can hear alot more than i could this time… everything was too distant and too scrambled. I struggled as much as I could to get up and stop but the seizures kept coming. I was taken by ambulance to Grantham hospital and I woke up again in resus at Grantham General Hospital. I couldnt undersand the dr, and what I could understand he wasnt listening…. my case is quite complex and they never seemed to understand. There was one really nice nurse who helped. I had a few tests and they gave me some medication and i was told to sleep…. yeah right ok so i slept, and they would wake me up for blood pressure,.. so id sleep again and the bin would bang down so loud i ended up having another seizure. In the end once id recovered from that seizure I self discharged myself. we called linda and she came and got us. (THANK YOU SO MUCH).
|in Grantham hospital