It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee.
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.
However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.
Fun in my life seems to have a price. No matter if it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.
I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away.
I love mum dearly.
You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life.
Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s.
go enjoy what life has to offer.
I am just going to say that the holiday blogs are going to be just that until the thursday. Yes I had seizures during the week. some big ones, lots of little ones but for once I want a little bit normal stuff on here just a week.
So It is Sunday and sherwood forest was calling… Well not literally but we were off to sherwood forrest. This is something Ive wanted to do for more years than you can imagine.. It was on my bucket list and something that i read as a child and said then “i want to go there” ive said it with ashdown forrest too (the 100 acre wood for those of you that do not read winnie the pooh novels).
Anyway we were all ready (ralph, Linda, Mum and me. Jade couldnt come which was a shame but we all piled in the car). Ralph I now know is a ex chauffeur which makes total sence now as he took us the long way round to show us the beautiful sights of the area. I was literally stunned when we came across sights such as this:
We arrived at Sherwood forrest… somehow it was not how I imagined. This is not a good or bad way just completely different than my pictures I had in my head. It was also alot bigger. It seemed ages before we got to the car-park and then we had to walk a long long way to the Major oak. The major oak was stunning, though tainted by supports that kept the branches from falling down in storms. It seemed so sad that something so naturally beautiful was now subject to being held up by man made structures. However it was still beauty, Just like everything, beauty lies within.
There were other trees round the forrest that were “quirky” too
This was my favourite
on the way home we had a picnic in the grounds of a beautiful abby, It was like a dream, I had just visited the major oak and was now on the grass picnic and blankets and calm, peace, no grr’s nothing. seriously amazing all I can do is thank the people who made it happen because you will never know how much that meant.
|Mum and I
|Me and my best friend
By the time we got home I was exhausted, I ached all over from lots of walking but It was one of the most amazing days ever.
Halloween is one of my most favourite times of the year. I love the spookiness, the food and autumn nights and it gives us adults a chance to make up and dress up without getting funny looks ! Just the last couple of years Halloween has been fab in our town. There is a group of people who have got together and organise a Zombie craw and this year (the 2nd year) we are also having a zombie ball.
I this year I was going as a zombie sleeping beauty, Kara as a zombie teacher and Mark and his daughter a zombie man and zombie school girl.
The run up to the even was great I loved dressing up and making up and it was a real buzz. The crawl was to be longer this year and i was also asked to shake one of those buckets where people put money (the events these people do always raise money for some charity). Anyway the night came and we were all made up and ready to go.
It was FREEEZING ! oh boy it was cold. Mark, nic, kara and I all went and and after many photos the crawl begun. by the time we got 3/4’s round i felt it was literally a crawl i knew it was supoesto be longer than last year but compared to last year it was a hike!
We all returned to the hall where the ball was to be held safely, exhausted and freezing but the night was young and we soon warmed up.
The event was a disco and a dj with all the gear was on the stage, the music was loud and fab. I hadnt gone to an even like this since a ball about 7 years ago. I had checkedd before booking that there would be no strobes that would set my seizures off and there wasnt… the night went really well and we all had a good time.
For once I felt normal
The next 2 days I had night fits and so sleep wasn’t great… dad was being his normal self and so i was a little stressed.
I needed to get out. emails/fb messages and texts had been going between Tory and I so to save me running round doing jobs with mum I went to the activity box. I was scared at first but took my oxygen and had phone off lock and Tory new everything. The day went great. i was exhausted at the end but i did some painting on the floor when i started to ache in the chair…. but still it was great. The work experience boy was a drummer so i tried to get him into coastal band…. i think he may be interested.
Pat, Tory and i spoke a lot over the last few days about my interest in art and the craftbox…I was asked to do the disney side, and to paint a few pieces.
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.