WRITTEN ON FATHERS DAY 2012

May 23, 2013 Jo Leave a comment

Today is fathers day 2012 . A day for celebrating dads everywhere.

Yesterday Mum and I had gone to view our picture on a photo mosaic of the queen at the turner contemporary art gallery, this was part of the queens diamond jubilee. Months before i’d sent in pictures of us all and written stories to go with them (the story had to be about why the picture was special to you) for one of the pictures I sent in a picture of mum and i on the race for life, this is a cause close to our heart as my nan has survived breast cancer twice. The last one she had was the most severe yet it was caught early and thanks to cancer research she is alive to this day. Anyway we went to see it in the flesh and it looks great. We are on the old queen on the crown… very apt i think!

It was the first time i’d been out properly after going into hospital. It was the furthest too. We packed the oxygen and I took it slow, i still feel very delicate and Im almost scared of my own shadow…. this bout has really knocked me. Anyway I got round and then on our way back we stopped of in our town. Mum wanted some things from busy bees and I needed to pick up dads pressie from the craft box. I was so so excited to see it but also worried as i wasn’t sure how it was going to turn out…not only had i done it in 4 sessions but id tried a new technique called etching. I needn’t have worried, The plaque was fab and I was so so excited to see dads face. The plaque was double sided and id put a bus stop on one side and his regiment and details on the other. This was a fab pressie and i was excited already. At home I put the ribbon on and a few beads so i could be hung up. I wrapped the plaque and decorated the bag and wrote the card. Everything was ready.

Dad was working all day tomorrow and was going really early in the morning. As a family in these situations we have always done the occasion the night before so mum said to go get it and we all sat down. Dad was playing on the computer, like he does a lot… i think the solitaire game must have a hypnotic effect cos he can play it for hours without blinking! when he came and sat down he had a spat with mum about having whisky in (which we didn’t) its my fult because i was too tired to go round the supermarket and be able to pick up his pressie so we were planning on doing the shopping tomorrow. Anyway he made some rude comments as is usual for him and said he thought we would have been nice! (charming) anyway pressie was pointed out and happy fathers day exchanged and he had the look of thunder on his face. Oh boy!

he took the bag and opened it… didnt really seem interested but smilied and then put it down.

well not the result i was hoping for. My heart sank to the floor and I went back to the front room. I put the plaque on the dining room table and sat down. I felt dreadful anyway why didnt he say anything? didn’t he like it? i knew the answer to my thoughts and questions. but it didn’t help as i already felt depressed without him adding more reasons why I should end up on antidepressants.

Anti-depressents were not a route i wanted to go down. Im not totally against them but I take enough medication already and I’m not even sure how they would react with my epilepsy drugs and I’ve enough problems with that already. I like to try my approach… the disney sparklie smile on the outside even if it hurts approach first. I look back on the years and remember my dark days…. i survived them surely i can survive now. Only time will tell i guess but at the moment I feel depressed. I went to bed and thats where I stayed till this morning.

I woke this morning with crust eyes where i fell asleep crying last night. It wasn’t the first time i cried myself to sleep because of family but I wish it didn’t get to me so much. I say I don’t care but the truth is no matter how much he hurts me i will still try and be nice…. what really gets me is when he gets to mum, that i really can’t stand. Last night mum was upset and that made me more upset.

Hey today is another day so maybe things are different.
Mum had put the plaque on the wall and dad was at work. I needed to go visit our friend today, at least i can talk to him. What we really needed to do is go shopping, If not for anything else but to avoid another evening like last night.

We went to asda. On the way I was on the iPad looking at emails and checking Facebook. our friend had made meringues and asked us round for a coffee! bonus i thought we were popping up anyway 🙂

We finished the asda shopping and went round. We stayed for about an hour and it was nice to give bill his card and pressie and actually see a smile. At least he appreciated it.

We then popped round nan and granddads as it was mums turn to play postman. she had brought grandad some ginger wine and chocolate… he favourites. she also got a smile.

It ended up a good day but the roller coaster isn’t on a high by any means

I look at other people with their fathers and I do feel a bit jealous sometimes. someone to go and talk to … I wonder what its like to be a daddys girl? I will never know.

Loss of Confidence

May 23, 2013 Jo Leave a comment

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

The next few days I rested and watched so many films that I would be great on a tv quiz show!

Monday I was due to go to art class. I really wanted to go as not only was I bored but I wanted to start on my big canvas. The problem was the art class was at the craft box where i had last been and ended up in hospital. I was embarrassed and scared to go back. Being the stubborn person I am (even to myself) i thought it was something i had to do… I thought if i didn’t i would never go back. I Picked up some flowers on route as I felt that Tory really deserved them she helped me that day more than I think she realises.

Mum dropped me off outside and I went in I was shaking, not only because I felt awful but I was so embarrassed. I met the other lady who was there that day but I had no idea how much she saw, if she knew or what as I was too out of it that day to know. She said Tory wasn’t there… My heart sank. I immediately started to feel scared as I knew Tory better and I was so unsure in my own body at the moment. I felt so alone.

I was given a task to do from the art teacher and just sat down and done it… i was shaking inside and my head was pounding. The infection had started to take its toll and my kidney was a constant pain in my side. I finished the task and was actually quite pleased with it. Now for the big canvas.

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 walked up the road, stood alone, still and was in tears what had I done I should have phoned mum before I left. Now I was alone in the street and no help or security. I called mum straight away and she came down to get me.. I when home and cried. What a baby I though… yet now I felt It would be more difficult to go back.

Life was bad again and I was so so upset and tired.

The next day I got up and brushed myself off and told me not to be stupid I went to the craft box. I had to finnish dads plaque I was shaking when mum took me down. I wish mum would go but mum said no and made me do it alone. So i did. I went in and Tory was there. Relief yet embarrassment and I still couldn’t stop shaking.
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.

WHOOP finally happy!

Embarrassment is never far away!

May 23, 2013 Jo Leave a comment

After the blip i had started living again.

I went to the craft box more and I went out with matt more, I was more confident and was going out with some other friends too. I started planning things further away and life was good. I was still having the seizures but they were less severe and I was at about 2 a week and I knew to avoid my period time. I started brushing up on my nursing skills by redoing my online training and had passed them all. I was getting ready to go back and I was treating every day as a bit of a holiday. I still went through bad weeks where my cluster headaches would be bad and i would need the oxygen but i thought that iId still be able to go back to work even with that.

To bring myself into the real world again I started taking my little cousin milly out for day trips. Things were good i was living, making plans yet this time still being reserved.

June 16th 2012

Things were good ! the last 2 mondays I’ve been going to a art class at the craft box as well and I’m still taking Milly out on the occasional weekend.
The last week i have been painting a plaque for dads fathers day pressie. Ive designed it with both his loves in mind. On one side I’ve got his regiment details and badge and on the other his own personal bus stop. On and off I’ve been going in and doing a little.
Last Thursday I was in the activity box with Kara (she was doing a similar thing for her dad but a gardening design).
Over the few days leading up to last thursday I had been feeling a little under the weather I had noticed my headaches were stronger and I had been having a lot of absence seizures. I hadn’t told mum how bad i was feeling as she had been unwell the last few months and I was done with worrying her about me. She done that way too much. Things were on the up so I thought I could cope.

Thursday was going to be our finishing off day. We went in at 10am and painted away and chatting about the usual rubbish we chit chat about. My head was getting worse so i took a couple of my stronger pills and then kara and I took a break to go and get a cake from the nearby cake shop. We came back and had a cuppa to go with it and continued to paint. Half an hour in and i felt strange, My head was bad and i was getting hot I went outside to get some air and as i went down the steps i knew something wasn’t right. I got to the door and it all went blank. I woke up laying on gravel feeling very cold. The lady who owned the craft box (luckily a ex nurse so wasn’t to badly freaked) was holding me telling me where i was. I felt awful and so so embarrassed. Why, How not again were my thoughts. I knew i wasn’t free from the beast but i felt I had gained a little control and here i was being proved wrong. (life with epilepsy is always unpredictable)

The next few hours are really blurry as from what I’ve been told i was in and out of seizures a lot.
I remember getting up and going back into the warm as sitting on a stool. My trousers were covered in mud as was my feet and hands. tory (the lady at the activity box) washed my trouser leg with a cloth and I was holding onto a roll of bubble wrap. I felt really ill and the sensations i were getting were odd as I didn’t normally feel them this strong once the seizure had passed.
The next thing I knew I was on the floor again. this was seizure 2. this apparently continued. I can’t remember what was happening yet i know people were there I could hear Tory’s voice and then mums. I could tell the difference between Tory’s hand and mums as Tory’s was smooth with short nails and mum had boney hands with long nails. Voices were distand and under water. i felt so so cold. I cuddled in a blanket and can remember mum passing me the oxygen. I was trying so hard to stay awake yet i was so tired. I wanted to go home and so tried to get up and get up the stairs. This failed as every time i got up I had a seizure. I can’t remember this part but this is what I’m told.
The next 2 hours are blank as I got taken to hospital and woke up in the resuscitation room with a needle in my arm wires on my body and a drip hung in position. There was a nurse and doctor asking me what happened… fit? i said groggily? the drugs kicked in pretty quick and it turned out i had a kidney infection which probably caused the flare up, it didn’t make me feel any better though i couldn’t believe id had a fit while out, this hadnt happened in a couple of months (ok i rarely went out too much nut hey) . i was so so embarrassed.
My head was pounding but the oxygen helped a little.
I was desperate to get home and our friend was there as huge support to mum. Persuasion meant they did let me home later that evening with a large dose of antibiotics and instructions. I was so relieved. I got straight in bed and cuddled in my blanket with magick and the oxygen. It seemed that too long of the oxygen and i would start feeling really rubbish again.

Pills, craft and disney

May 23, 2013 Jo Leave a comment

I came home from London with relief and sorrow.
I had the ok for oxygen, but i also had more pills to take. I was now on a total of 19 a day. If they help i don’t care i said.
A few weeks on and a little improvement was seen on the seizures. I had to up the dose of the medication and they meant 22 pills a day but who cares little improvement is better than none.
I was still getting a few absence seizures but i didn’t even bother to say about those any more.
When i was on my menstral cycle the generalised would be worse. The oxygen however meant that my headaches were able to be controlled a little. Sometimes the oxygen got rid of the headache totally. Was i about to get back to work and have a life?

Although i knew deep down a normal life was still far ahead i was getting braver. I went out down the street and posted letters by myself. I went in shops on my own knowing mum was just in the nearby area. I done craft fairs in public, went shopping and as long as someone was about life was good.

The medication wasn’t perfect as i did have breakthroughs but i went from 5-10 seizures a week to 2-3 big seizures a week. Thats a big improvement.
The oxygen also meant that recovery was quicker. Mum use to grab the mask and give me oxygen when i had a seizure and we found this helped this too. We both started to relax.

February 11th 2012.
After a lovely but difficult christmas came the new year. My friend Matt had become my boyfriend on New years eve and I couldn’t have been happier. I was going out and really living life. He knew me from school (total of 16 years) and he had grown up with my seizures so all was good.
Over the christmas period i had a few blips and had to spend a couple of days in bed as i was too bad after the seizures but i bounced back. Febuary was different though.
Matt and I were dating and our first valentines day was planned to be great. However 11th february 2012 i was taken into hospital. The seizures wouldn’t stop and again hospital was the only option. I went through the same process as always, anticonvulsants in a drip over night and a couple of days in hospital. i got out of hospital on the morning of 14th february (valentines day) this wasn’t going to be the day we planned as i was too weak but Matt came over nevertheless and we had a lovely evening watching a film. I was happy.
I was a bit disheartened by this blip as i thought we’d cracked it as the seizures had reduced little and i thought i’d just up the medication and that would be it, but I didn’t give up.

As soon as i was well enough matt and I were off doing things and Kara and i started crafting again. I Started to craft more seriously and sell a few bits too.
Id stopped going to WI as it was getting the same and mum wasn’t fussed so we chose to spend the joining fee on some show tickets throughout the year instead.
Kara and i were still best buds and soul sisters and she introduced me to a amazing craft place. the craft box . You paint pottery then the lady puts it in the kiln and it comes out shiny and looking amazing. We went there often and i started to go there solo too as Kara could not always do it as she had so many other commitments to clubs and social groups such as drama and craft.

We didn’t always craft. we went to the cinema and shopping and other places too. We even went to the o2 arena and watched disney on ice. It was great Kara was becoming as mad on disney as i was. I felt sorry for her mum as she had the job of taking us but she seemed to love it too. it was a really good day.