This morning is 22nd June. I had my consultant appointment at 10 so I couldn’t leave home to the gig any earlier. we got up and ready and went to my appointment. That was both good and bad. Good that after reviewing the EEG’s better they have better idea of the issues surrounding my temporal lobe areas. Bad news being that after this I now have to go back to London where the treatment is better than down here. I don’t know what this will entail yet but it’s a wait and see. I’ve normally been going to kings college but this time i have to go to the national hospital for neurology and neurosurgery. It’s a bit of a bummer but at least it’s another step forward.
My last post was about sci-fi weekend. well the next day I had band.
I managed to get enough rest to go to band. I love band but with Epilepsy there are a lot of things, worries, situations that I have to prepare for that many people do not see. Monday night my friend was not there.. It meant that before hand I had to deal with mum who was in a small state of panic as to what would happen and how would I deal. I got over this by mums phone number on a piece of paper being given to the conductor… I really hate all this but its safety I guess plus no one would have known what to do really. The next problem was that the gig the band are doing this weekend is at the East Kent Airshow. its a huge event and we are playing.. however to get in you need a ticket. The band get in for free however tickets are about £20 ! thats alot in our world. Money we cant afford for a gig that mum really didnt want to come to apart from to make sure that if I were to have a seizure I could be safe and she could help me and get me home, administer my pills and oxygen. Anyway we got given a wristband each at band and i was praying there would be spare ones… i dont know if there were or were not because they disappeared quickly. They were very coveted. Some people knew my situation and one extremely nice band member who already had brought a family ticket gave me their wristband. I am so so thankful I dont think they can ever know how much that meant to me. Mum hates planes and noise but knows how much i wanted to do this gig. I am so so happy to have the oppertunity to go.
Of course it will all depend on if the beast lets me have a good day but fingers are crossed.
Its not just the gig and the beast I have to worry about saturday. I have a appointment with my consultant on Saturday morning before the concert. Im really worried about this appointment as I get news of what next. Having this news prior to a important concert is not really how Id like it. I worry that if it is band news I will not play well. Then again if it is good news im going to be so so bouncy!
All I can do until the morning is have faith and pray.
Well the last couple of months have been full of ups and downs.
The ups being good days and playing music, meeting friends and the bad being hospital visits, consultant meetings, results and I still cant see out my left eye !
A few weeks ago now I met with my consultant, and another consultant from a high up place in the care of epilepsy in the whole of kent who was lovely but this meeting totally confused me as It was a surprise not to be just my normal consultant. I always have questions to ask my consultant but it all went out the window when I went in and the other man was there, therefore I didnt get chance to say hardly any of what I wanted to ask. In fact I left with more questions.
The man was there to talk about my situation and the posibility of doing something more invasive like surgery. This has been spoken about in the past and I was told a few months previous it looks like it may be possible…. it turns now that this isnt a option yet as my seizures dont just originate from my temporal lobe like they have done all my life but now have also spread to the occipital (explaining the loss of vision from my left eye). This for me was a complete kick in the stomach yet good news as well as at least I knew why my eye had been on and off and now pretty much off for the duration of time.
I liked the extra consultant yet It was a really difficult meeting being told that the end of the line as to what they can do is very near. If surgery isnt a option and the drugs are not working then at the moment we are at a standstill. However there are a couple of other options being looked into as I type so for now all is not lost… its close but we’re not there yet.
The other issue we spoke about in the meeting was my cluster headaches. It makes things more difficult that I have these as well as medication reacts and all sorts of things which I dont really understand myself yet they just said its a little more complicated and they tread carefully. Anyway there was this drug I was told I could try a few months ago. I had to have a ECG though to check my heart as it reacts with the heart. I had the ECG done and I wanted to now start the drug so I brought the subject up. This too was not a option as the ECG came back with a problem…. yet they didnt say what, and that was one of the questions I forgot to ask as they went into a different subject before I could really finnish what I was about to say.
I left the appointment a bit grumpy and down. It was hard being told the end of the road is neigh, but i had a few answers and I knew not to panic about my eye too much and I knew they were now working hard to find me some answers and help.
Still, got to keep going, have faith and “just keep swimming, Just keep swimming” !
Now to wait for the reply and answers.
A few weeks passed and then another blip..
One Monday I was at the craftbox on my art class course… I felt ok’ish… my head was pounding but id taken pills and i was doing my painting. Well i obviously looked ill as Tory managed to get me downstairs… I had a seizure and another and another.. luckily we had oxygen and i was able to come round in between but then that stopped… no more coming round. The ambulance was called and I was taken to the local hospital but different from the one i normally go to. I hate this hospital. I was given oxygen as the fits had stopped and had neuro obs done in a fashion… I can remember being pulled and poked and shouted at while i was struggling to sit and keep upright and stay awake.. I’ve never struggled so so much to keep awake as a dr was shouting. He finished and asked how i felt.
I told him i still had my aura of a funny feeling in my stomach and like i was going to have another seizure.. He told me that stomach pain is nothing to do with epilepsy and i was discharged and out the cubicle in 5 minutes… i guess they wanted the bed !
I can’t remember much apart from the struggle to walk.. I didn’t really know where I was and mum told me she was literally dragging me out the hospital. The next thing I know I was waking up on the cold floor of the outside of the hospital… id had 3 more seizures. There was a couple of nurses i think and i was taken back to A&E. Mum had called dad to come get us earlier on and now he came and I was back… I’m not sure he was happy about having a wasted journey but then he saw a fit and realised this was probability where i needed to be. I was kept overnight and discharged on the tuesday morning.
I was stressed and pissed off and wanted to be anywhere but on this plannet but here I was. Wednesday I was determined that this teapot was going to get done. I went to the craftbox with mum. we had a lovely morning and id nearly got it done. I had a appt with my dr consultant in the afternoon so After a lovely morning of watching Tory and Pat sorting shelves, eating brownies and scones and strawberries, and me painting my teapot and minnie mouse i went to the appt. the consultant was helpful yet disappointed as i was but didn’t say as much i i had hoped… I came back to the craftbox to collect some bits and finnish off as Kara was there now too. Tory had given me a lot of bisque to paint for disney style so she can sell them too.
Kara offered me a lift home which i agreed to but then felt odd… i text mum straight away to come and get me but by the time she came i was out again. I can’t remember much from here on but mum said she came and then Tory called Pat to come down to help. I can remember Pat’s hand and voice at times. Then mum called Grumpy off the bus cos this was the wost she’d seen me.
He came I was taken to the city hospital and stuck onto Phenytoin drips and saline as my bp very very low….. 40/38 ! ! !
anyway the next 2 days were awful… I did however meet my ex mentor who was lovely on one of the wards. It was a bit embarrassing though having seizures in front of someone who helped train me to be a nurse.
I had to move from there to the neuro ward and thats when it all went wrong…. The drugs by this time had racked my system and i was not me.. i cannot remember a thing but being in a very small room and dr’s and nurses in the room crowding me trying to explain about brain scarring. I asked if i could have just a couple as i was feeling very claustrophobic and sick but they refused to leave… i apparently became very agitated sat on the floor…. i guess to get out of all the heads and tried to get out the hospital. bloody locked wards !
Kara was there and had gone to the lounge so i went there and i panicked. I phoned the only person i knew understood what was going on and may be able to help me so i wasn’t so crowded with people… Tory. I now know I probably shouldn’t have but i needed a friend who could talk hospital language and help me stop these people all talking to me at once… I had asked to talk to one person and that didnt work. Tory was my only thought to help… I thought she was a good friend.
She is a friend but at that moment not in the situation on that day….. The drugs had caused me to not know what had really happened that day. I felt back at square one. Alone with no one understanding what epilepsy and these drugs do to my body. I am still doing commissions. I still feel very unhappy and disappointed that this happened though. I had lost control over my body once again.
I finally got out of hospital on the saturday and received (mum received) a call from my consultant. As we are at the moment we are still waiting to hear and get an appointment for help and talk about london.
Im still having the seizures much worse than i was although i am coming out of them so that is good!
i don’t want to go back to hospital as I’m so so sore . my veins are hard as rock again and all very painful… phenytoin and diazepam and all the other drugs that I get given are nasty drugs but good as they work.
|Magick keept me company in the three weeks i was in bed.
my best friend in the shape of a cat !
I stayed in bed for about 3 weeks after coming out of hospital. The seizures had racked my body. Sore joints and muscle weakness, My left eye had also gone black and i was unable to see out of it. This had happened before but this time it seemed worse Normally it was blurry but this time it was black.
This was about a year ago….. more has happened since then.
If theres something I’ve learnt and thats life is precious. Epilepsy does scare me sometimes and so do the cluster headaches. I try not to show it, i don’t like to and I hope that people wouldn’t know unless they know me wouldn’t know what my life is about just by looking at me… why would they unless they spend enough time with me. This time really did scare me. I had taken a picture half an hour previous to my fits and the next day when i was out of hospital i looked at it and there is no sign of what was to come. Like a time bomb waiting to go off?
|Painting before my seizure at the craft box|
I started on the work but was so tired i was nearly in tears. I was scared and I felt I had to leave and quick. I made my excuses and left.
I done half of dads plaque but was too tired to do the rest. Kara needed to come down that afternoon so i went home, had lunch and slept. 3:30 claire and i went back and finished the plaques.
kara would also come round to mine and we would chat and do crafts… life wasn’t great but it was ok. kara and i loved similar things and had a understanding. unfortunately i couldn’t go round to hers much as he dog jack had taken a dislike to me and tried to eat me on too many occasions for my liking but we still had mine to meet up at.
We went to london and after 2 and a half hours in the office we came out. our friend had coffees waiting which was a relief beyond reliefs and we went home.