Some of you may or may not know I use to be in two bands. I left one about 5 years ago however two years ago I also left my favourite band KCCB. I was never very confident after my repetitive hospital admissions sitting in the hall full of 50+ musicians, I was 4 flutes away from the end of the row and with music stands and instruments I worried about being able to get out of line if I felt a seizure coming on. My head was always aching, I was always tired and my joints ached and sitting playing music for that long was also hard. It seemed like I had no choice.
I still use to play music at home with my backing tracks but it wasn’t the same. I didn’t have the stanimer and it wasn’t the best when stopping half way through a tune to hook myself up to oxygen.
So as you can see in the blog life just continued and I got into craft and that was it. However My friend had been coming over and saying about going to the band and about me going back. This was a good friend who had been with me all through the crap and visited me in hospital. He played music too and very often he would bring his sax or trumpet over and we’d play along to the backing tracks… (we still do). One day on september 3rd 2012 it was decided and I was going to go back to band.
I was so nervous and scared.. what if i had a seizure? what if i knocked everything flying or drop my flute? well ok i did drop my flute but it survived!
The seizures were still not controlled and I was having absences throughout every day as i still am and the big seizures were still unpredictable however I had thought about going back a lot and came to the conclusion that i could not let epilepsy take away everything I loved.
I had had to stop my work/job/career which i loved and couldn’t drive and so many other things that I had been stopped doing because of the beast.. It was NOT going to take my music away too.
So Mark picked me up and we went to band.
I took my flute but only played for half as I went and sat at the back cos blowing was making me dizzy but over all the eve was fab. I had forgotten that buzz of sitting on the front row and the sudden rawwww of instruments coming behind. It made me jump ! It surprised me how relaxed I was when playing music. It was the best drug id taken in years! (music to musicians is a drug… its addictive too).
Music made me happy. Music still makes me happy. I enjoyed that night and from then on I have been back to band almost every week. I do still panic if the chairs are arranged a bit tightly and I cant see a easy way out if i need to. Only at the last gig I had to make sure I had a quick exit just in case.. I am now 3rd in line and playing first flute with two wonderful ladies. It helps to be playing the same part as them as I still cant see out my left eye and so depending how we’re sitting that night or that concert sometimes i cant actually see the conductor very well but i can see glints of the other players flute move up and down, which tells me where we are as ive pretty much learnt how each player holds their flute. It sounds bonkers but I know what i mean and it works.
I was a bit upset one week at band when Id been playing first flute and two of the pieces i got given back were 2nd. Well normally I wouldn’t moan but as I cant see very well I work of memory quite alot and that close to a concert I was a bit grr as to why anyway. the problem was sorted and i got my pieces of music back. I also like playing the same as like i said above… its like having a backup conductor ha ha.
Anyway this is going well for me I love being back at band and I am enjoying seeing everybody again. Its not only the music but the friends, the conversation it makes life better. The music is hypnotising and makes me forget about all my troubles and just enjoy the music and the moment. Yes Ive had a couple of blips but ive not knocked any stands over yet.
I often loose my place in my music due to an absence seizure – and one of these caused me to drop my flute but it survived and I either find my place in the music or by the time ive come out and woken up so to speak the music has finished but it is still the best thing i done. I Love Monday nights and band and the whole atmosphere. It means I have something to look forward to every week and i love it.
Music is amazing and has given me back a piece of me !
you can view Kent Coastal Concert Band on my youtube channel at
Tag Archives: epilepsy
Building of the studio
Ok so it was discussed between mum and I for a while, i really do need my own space. Being an adult and living at home is bad enough but circumstances mean i don’t really have a choice its just not safe or practical to move out and Im not allowed to work at the mo. Anyway so we have this brick building at the bottom of our garden, its not in great condition but its ok. we have been thinking of extending it and using it as my getaway and craft studio. we found out a few weeks ago that it can be done and they got started monday 8th october 2012. It is now complete and the journey has been amazing (i am still waiting for the tap to be installed but minus a tap it is fabulous!)
Photos of progress are on my flickr feed:
Its great and gives me something to really look forward to and will be a place i can get away from things and people.
Yes ! and apologies.
Tuesday and we had a knock at the door. it was the builders to come and have a look at the white shed to see if the studio could be built.
They had a look and we told them what was needed and WHOOP! yes it can be done.!
and the best bit….. the builders are larry and jamiee.
for a few weeks the blog is slow…
this is because
1) grumpy has ben more than just grumpy…. we’ve had lots of issues which will be gone through in another post when im in a mood to bother talking about him.
2) seizures have not been great but we cope. and i got a new toy which will also be gone through in another post.
3) my building of the studio has started…. pictures will go up in a min,
4) ive gone back to band practice which i totally am loving but is another thing draining my little energy, but itss so worth it.
anyway these are my excuses and apoligies for being away for so long.
Normal service and blogs going through each of the above will be going up soon.
xxxx ttfn x x x x
Finding my feet unexpectedly
Over the next few days I got stronger and have found my feet again. Ive still had not gone out and I honestly didnt want to at that moment… I feared of having seizures while out again much more so than while at home… home comforts make such a difference and it’s now i realise that more than ever.
My eye was still black and my veins were still hard… the bruises still there though fading and I felt a little better despite the constant pounding headache and feeling like a weak, wobbly ticking time bomb!
life goes on and mum suggested or asked me if i want to do something. Like what I asked? how do you mean do something? Mum realised i couldn’t go back to nursing for a while and maybe not even want to or will ever be able to at this rate. After all of this was the NHS somewhere I really wanted to work? not sure.
Anyway mum was laying on the bed with me and started talking… I was shocked… I had just been offered all the help i need to set up my own craf business. jewellery making, glass painting (she knew I always wanted to have a go at), painting, blinging, craft. I didnt know what to say or do I was still pretty shocked… mums not the crafty type (I wasn’t until I moved to where I am and Kara kinda introduced me to this world of glitter, glue and wire and beads!)
Anyway the end of this conversation it was decided that I’m going to be helped to set it all up and even have my own space built in the back garden ! i am so so excited… there is a lot to do and sort first but i have already started looking up different projects to start on.
I have a project… I’m finding my feet. I have a reason to get up every morning.
Life is beautiful its the silver lining in the dark clouds.
One year ago.
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.
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| 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.
Lightning strikes twice
JUNE 26th 2012
Today was another really terrible day in my book.
Despite waking up feeling positive and happy (well why wouldn’t i?)
Despite waking up feeling positive and happy (well why wouldn’t i?)
dad was going to work… I was seeing nan and grandad Then Kara and I were going to the craft box I was finishing my teapot and Kara had a pot to complete for a wedding pressie. A good day was planned.
I relaxed and was loving my painting. Kara and I were having a laugh and Tory was chatting away too. She had a work experience boy starting that day and it he was fab too. All was good.
I’d nearly finished the rim of the teapot. it was a detailed bit. I started to feel a bit yucky and put it down to the concentration. I took my pills and continued to paint. I had to stop for a bit though as it was getting a bit much…. i felt my body tense… i felt a rising feeling and a wave of fear came over me. I knew what was happening. I tried to talk to let someone know but nothing was happening. I heard Tory ask if i was ok… i don’t know if i answered or not. i can remember hearing ‘floor’ but i couldn’t move…. the moment passed and i woke up on the floor, Tory right there and purple blanket about. Increasing pain in my head and aching from head to toe… I felt like i needed to get up but i can’t remember if i did or not.
Mum must have been called and when she arrived she didn’t look happy… I guess thats my fault. Mum took me home and I went to bed. 4 hours later I woke up realising the aftermath that must have happened. id text’s and calls missed on my mobile from Kara. I text her back and told her i was fine. She was worried about the pamper eve and if id be there… i couldn’t answer that right then but i said id try.
I had had a bit of a infection previously this month id felt a lot better since finishing the antibiotics but still not great, i pushed it aside putting it down to my normal aches and pains from the seizures but now i made an appointment with the Dr.
The next day i went and had my appointment. temperature, blood pressure the lot. My temperature was 39 so quite high and my blood pressure low but i normally have a little bit of a lower blood pressure. a couple of tests showed infection. my blood results would come back on friday. We later found out that they could not get enough blood to test… since the repetitive hospital admissions and IV drugs my veins were hard and unable to cope with much more. From the other tests It looks like another kidney infection so back on the antibiotics i went. 🙁
Tory had sent me an article on caffeine and seizures. I asked the dr but he didn’t remark much.
I did start the no caffeine that morning though.
Race for life 2012
There two things in life that scare. me… loosing those people who are precious to me… And the uncertainty of how/ when/ the beast is going to strike and the uncertainty of what will happen because of it.
It’s a fear i deal with daily and yet it never gets easier.
Today is friday. The day after tomorrow (sunday) I’m supoesto be in the race for life.. ok my whole world seems a race for life at the mo but this is special. Race for lfe raises money for those with cancer especially breast cancer. thousands of women all over the country come together and walk/run a 5K course and get sponsored for doing so. It’s a wonderful atmosphere and I’ve done it for 10 years. This year in my mind is no different…. the will i do it won’t i isn’t a option… i have to do it.
It’s a fear i deal with daily and yet it never gets easier.
Today is friday. The day after tomorrow (sunday) I’m supoesto be in the race for life.. ok my whole world seems a race for life at the mo but this is special. Race for lfe raises money for those with cancer especially breast cancer. thousands of women all over the country come together and walk/run a 5K course and get sponsored for doing so. It’s a wonderful atmosphere and I’ve done it for 10 years. This year in my mind is no different…. the will i do it won’t i isn’t a option… i have to do it.
Too many people have been taken away from me by this cruel disease for me not to fight back and this is how i do it. When i run the race i feel energy, adrenaline serge through my body… then I feel pain and the aches that go with running or walking that distance. yet this is all part of it. I look back of how my family have suffered with cancer… the struggles they went through. The struggle that i have been through and then i feel silence as i remember those who didn’t make it.
There are so so so many people who i could run for but i have 2. These 2 because they were the most inspirational people I know and have known. My nan has battled cancer twice. The first time she had a maceotcmy then came all the trauma after of drugs, appointments, uncertainty, fear and pain. She took it all in her stride never looking to what could happen. I really admire her for that. I couldn’t have braved it as well. Then 18 months ago nan was diagnosed with stage 4 lymphoma in her other breast. The chances in it happening were crazy but yet here we were back in the same routine. Being such a aggressive cancer an operation was no use, She went through months or radiotherapy and so far so good… but we are still having that fight. If there is something I’ve now learnt and thats it mostly is never over completely.
The other person I do the race for life for specifically is Suzie . She made such a impression on me in such a short time its hard to think of a world without her… but we have to. Suzie lost her fight with cancer and this will be the 2nd year i’ve raced for her. I met susie at band practice and although the band is friendly and i love it Suzie was always the one with the smily. She was the lightbulb in the room, the sunshine in the sky and the wind in the trees. She was the sort of person that she didn’t have to say a word to make a problem go away. She meant such a lot to so many people. Its wrong she was taken away but her pain and suffering is over and I race for life to help make a difference in what could happen in the future. A future with new drugs, new promises and a
place where cancer doesn’t win.
The last couple of weeks have been really tough. If felt like my body is no longer my own, but Sunday it will be. Sunday i must win.
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| Crossing the finishing line |
UPDATE
well i did manage the race for life… all be it with one hell of a struggle and a lot of oxygen on board! the last few days have been difficult as I’ve ached so much and i paid for the race with a seizure that night. At least i got through it and raised the money and thats what i wanted to do.
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| Mum and I in the local Paper |
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| Yay |
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| With our medals |
WRITTEN ON FATHERS DAY 2012
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.
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.
Embarrassment is never far away!
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
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?
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.
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.
