Back Pains and the Letter

It's nearly Christmas!!!

My absences have been getting pretty bad at the moment.  They're becoming almost 20 minutes long and I feel as if I am losing all feeling in my back.  It's more or less like all of my bones in my back have vanished and I just slump forwards into an absence and I become double-jointed.  Emma always has to try and catch me when she is sat next to me because I am bent almost in half.  I feel as if I am stretching my back and twisting it all over the place, so when I am sat in certain positions, the side of my back really hurts.

When I'm lying down in bed or on the sofa, then I tend to feel fine because the muscles in my back feel very relaxed and I don't feel tensed up at all.  However, when I sit up I instantly feel in pain because I am not relaxing my back to stand up and I am trying to sit up straight.  Sometimes if I sit or stand in a certain way then the pains start, which isn't very good when I am working in a shop and I am constantly walking around!

I received a letter today from my doctor.  It was a copy of another letter to a neurosurgeon to discuss me having a VNS implant.  It basically said that I am a 21 year old (he actually got my age wrong, I'm not 21 until next week!) who has intractable epilepsy.  In other words, that means epilepsy that couldn't be controlled.  He said that I have tonic-clonic seizures every 3-4 weeks, absences every day, what I went through on holiday with my repeated seizures and my psychosis (thanks for reminding me!) and that he had explored every avenue that could be looked at and he doesn't know what I could have next.

It then went on to say that I am a very good candidate for the VNS implant and he would like me to have the 106 model.  After receiving the letter, we did some research on what the 106 model is and we found out that it is the latest model and it was only available since this year!

We are very excited for the VNS implant, but for me it is nervous excitement.  I have never gone under anaesthetic before.  I have stayed overnight before - I actually went in there for a week exactly a year ago today but I guess being under anaesthetic is different.  My parents have said that it's like being asleep, so I will just have to rely on what they will have to say!

VNS Implant!

It was my doctor's appointment today and of all days it was on my mum's birthday!  We were there to not only discuss my medication, but also about a VNS Implant!

VNS stands for vagus nerve stimulator.  We have decided to push for this because I have been put on and off five or six different types of medication and they don't all seem to be working.  Lots of people use VNS to control their seizures.

The therapy is delivered by a generator which is similar to a pacemaker and a thin, flexible wire.  This helps to send lots of impulses to the brain.  There are side effects which tend to affect the voice and make it more hoarse.

A small generator is placed in the left chest area, and depending on the settings on the generator, a procedure is needed to replace the generator usually after between 3 to 8 years.  This is done under local anaesthesia.

The generator is usually turned on after 2 weeks of the implant procedure.

The VNS magnet is used by briefly placing the implant over the generator to either shorten or stop the seizures.  It can also decrease the intensity and reduce the recovery time.

I have been feeling a bit nervous about going under general anaesthesia.  I've never done it before but I'm sure I'll be fine once I'm there.  But I'm being referred now so it's all going ahead!

Mum also noticed a bit of my hair coming out recently.  I haven't noticed anything and it didn't seem to be very bad, but the doctor said it may seem to be because of the repeated seizures that I had on holiday and the psychosis that I had.  I thought that I had gotten over that, but she thinks it may be some shock of that happening.

So, fingers crossed that everything goes well!

The VNS Diagram

The Generator and Wire

The Magnet

Epilepsy Awareness Month: Day 25!

Hello!

Day 25 has been quite an eventful day for us!  We went out for lunch with Mum so she could mark her last day off work, so it was a nice lunch of spaghetti and meatballs for me!

I've had almost a week of my mind racing of whether I was going to do two dancing exams or one.  My heart was saying to me to think about what the 20 year old version of me would do and I was thinking that to be honest, I would do only one dancing exam because I was only confident in my Latin American dancing exam this time and I would do my Ballroom exam in February.  On the other hand, my head was telling me that I would be fine doing both dancing exams.

So last night, I told myself to think rationally about these exams because my dancing has always been important to me.  This then resulted in me deciding to get my dance teacher's phone number off Emma and saying that I was going to ring her before I changed my mind.  So now, I am going to do my dancing exam this Saturday, and I am going to smash it!

I am going to attach today's picture below!

Epilepsy Awareness Day: Day 24!

It seems that when I absences, the ones I get are extremely long and very tiring!

I had work again today.  I was alternating between pricing items, hanging stuff up and being on the shop floor.  Lucky the shop that I work in is a small shop, otherwise I would be running around all over the place!

I had a bit of a moment at the till where I was getting stressed over an amount of money that someone had given me.  Something had cost £10.49 and they had given me a £20 note but they thought that adding on the 49p would make things easier too.  I had to count the 49p that the customer had given me but it really confused me.  It would have made things easier if I was given the £20 note!  I had to get the manager to help me because I had gotten so flustered about it!  But I got there eventually!

Sometimes, I know that I need to remember that there are only the rare minority of people that get impatient if you take so long at the till and more or less everyone is fine and really patient about it!

The picture that I have will be attached below!

I have one of those by Craig Revel Horwood!  It's even framed!

Epilepsy Awareness Month: Day 23!

It was time to go out to lunch with Emma today!

I don't get many days out with Emma for lunch because of her working, so it was good to take this opportunity.  We even went to my favourite restaurant!  Although the heating was broken, the waitress sat the two of us right next to a massive radiator, so we warmed up straight away!

Seeing as Mum said that no one is getting into the Christmas spirit this year, Emma and I tried to make our contribution.  While Mum and Dad were out, we got the mini tree that Mum used to hang her hand-made Christmas decorations and decorated the tree with tinsel and put a Christmas decoration on the top of the tree (we lost the star) and Emma got the rest of the tinsel and decorated herself and I put a Santa hat on!  When they got back, we jumped up and started singing Christmas songs!  Mum got Christmas, so she got Christmas!

I heard my first Christmas song today.  It was Merry Christmas (War is Over) and we were sat in the restaurant.  I suggested to Emma that maybe we should put Christmas songs on in the car and she said that her car was a Christmas song free zone and a place of solidarity.  In other words, she is a misery guts.

I didn't have any absences today, which obviously is good.  My hospital appointment is coming up in two weeks (I can remember because it's on Mum's birthday!) so we can discuss everything - from my fall next to my bed to my temper.  Hopefully the doctor will help to improve things.  That's what he's there for!

My next picture is attached below!

Epilepsy Awareness Month: Day 22!

Jools Holland was really good last night!

Dad said that there will be a lot of dancing at the concert and we didn't really believe him, particularly with the type of music that would be played.  I wasn't too convinced about how good it would be because I wasn't too keen on his warm-up acts before he came on, and Nottingham didn't really appear too convinced about the first half of Jools Holland's performance!  But then KT Tunstall was there as one of his support acts and sang a few of her songs half way through and then suddenly the rest of the audience were up and singing and dancing for the rest of the concert!  I think if she wasn't with him then Nottingham would have stayed sitting down the whole time!

I had a really bad absence whilst I was at dancing which made me really tired, so towards the end of the performance, I began to not feel well and feel really tired.  I really enjoyed the performance, but I think I would have enjoyed it even more if I had twice the energy!

We're suddenly writing our Christmas lists at the last second!  Everything has been so busy, we haven't even had time to think about it!  You know it's Christmas when the Coca Cola advert comes on!

I will attach today's photo below!

I had one situation where epileptic fits followed one after another.  It was on holiday this year and I had nine seizures one after the other.

Epilepsy Awareness Month: Day 21!

We're going to go and see Jools Holland!  He's a pretty well-known singer who sits at the piano and has a pretty large bands behind him.  These include saxophones, trumpets and trombones and he plays lots of rhythm and blues music.  I reckon it is going to get very loud!

We're sat in the stalls again so that means that we will get a lot of sound, particularly with lots of brass instruments on the stage.  But I reckon that there will be lots of singing both on and off stage!

My picture for Epilepsy Awareness Month is below!

I've had a seizure in bed before but I've never needed an anti-suffocation pillow.

Epilepsy Awareness Month: Day 20!

Dave Gorman was amazing!  He was really funny and we had some seats in the stalls!  He had a Power Point presentation and his computer and although his show was in the same format as his TV show, it was still hilarious!

He definitely had the "Don't take any photos" rule sorted.  He had a slide for it which said it all.  He told us all to get our phones out and gave us 15 seconds to take pictures of him using that slide!  We got our phones ready and he put up a slide which just said "NO PHOTOGRAPHS"!   It was so funny.  But he still got one over on us when we put our phones away.  He even got the better photo using that slide and there was nothing we could do to capture it!

He had a brilliant support stand up comedian with him yesterday which we all loved.  He's the best support act I've seen.  The string quartet that usually play with Dave Gorman weren't there for when he was reading his poem that he writes from finding comments from online news sections, so he used the stand up comedian to play the piano as an accompaniment instead!  And whenever Dave Gorman cracked up and couldn't stop laughing, the stand up comedian started playing piano solos and started improvising for ages until he started talking again!  I'd love to watch it again!

I had an absence in the middle which was quite deep.  My head started drooping forward which wasn't too great!  But I managed to get all of the performance so it didn't really affect me!

Here are the photos for today!

Yeah, these can be a real issue!

Epilepsy Awareness Month: Day 19!

We are going to see another show tonight!

This time, we are going to see Dave Gorman in his own show!  He has his own show on telly called "Modern Life Is Goodish", where he has a screen and a computer and he has his own presentation where he shows other people his views on the world.  He's a really funny comedian and I'm really excited!  Except I think Mum forgot his name yesterday.  She called him Dave Norman and I had to correct her.  It's better to let someone know the name of someone that they are going to watch before they go and watch them perform...

It's been a fairly relaxing time.  I haven't even had any absences since yesterday, which is a very good thing, and I have had no falls since the one a couple of days ago, so that is a good thing.  On the night that I had the fall in my room, I was stood on the stairs chatting to Mum whilst she was setting the alarm so imagine if I had a fall then!  That would have been horrible - and that was a few minutes before the fall in my room!

I will attach today's picture below!

I have heard of this happening many times before.  Strangers have helped me at a bus stop - this made someone late for her train and someone else was a doctor!  I was one of the lucky ones.

Epilepsy Awareness Month: Day 18!

The Clobozam seems to be affecting me more than I realised.  I still snapped at Mum tonight before it was time to go to bed, even though it was because she was only tapping my leg.  I don't know whether it was because I was was tired or not, but I don't really know what to blame it on.

The doctor doesn't seem to be arguing his point of view now.  Either he agrees with us or he just doesn't want us to argue back with him any more.  When we said that we thought that we should bring me down on the Clobozam, he immediately said that I should be taken down on my Clobozam without any discussion!

We've been given the times for the dancing exams.  It seems that we are going to be there for a full hour, so there will be a lot of waiting around!  I hope that the examiner is generous with their marking!

We are going to charge up my camera and move all of my graduation photos on to my computer so Emma can film me dancing all of my dances so I can practice them ready for my exams.  I do this so I can perfect every move and memorise all of my dances!  I discovered a couple of days ago that that's what the professionals on Strictly Come Dancing do as well!  They film each other practising their professional dances so they can remember all of their dances!  It's funny that I do the same things as the other professionals!

I will attach today's picture below!

That would be a good thing to have... if I actually liked being around dogs...

Epilepsy Awareness Month: Day 17!

I'm going to bed with a particularly bad bruised feeling on my shoulder blade.

The last thing I can remember is picking up my glass of water so I can have a drink and then the next the that happened was Mum pulling me out of my hole by the side of my bed so I had more space.  She was asking me if I had any space to sit up and I had some space so I could turn around slightly to get out, but I didn't have a lot of space!

It was a bit of a struggle to get me out of the gap between my bed and my desk because it was so small, but we got me out of there eventually.  I was having a drink at the time though, so when I fell I was covered in water and all my stuff was covered in water!  This included a photo album with pictures of me and my family.  I had to get changed AND we had to dry all of my things that got wet!

I had work today.  I was on the till and this time I was ok.  I did get a bit mixed up with the change, but I have learnt to not get all flustered and stay calm whilst I am giving change to the person buying something and the person buying the item was patient with me.

I will attach today's picture below!

I got a lot of trouble from some of my friends of all people about that!  But look on the Epilepsy Action website for more information.

Epilepsy Awareness Month: Day 16!

I had another absence today...

At least today it was a slightly lighter one.  It was towards the middle of the day so there weren't as many people around whilst I was having it.  Emma was in the room, but she was engrossed in her music just like me so I left her to it.  Mum was also in her crafting room focused on her various Christmas crafting designs and I wasn't in any discomfort this time so I just stayed in this absence by myself.

I didn't panic this time like I did on previous absences.  It's easier to go crazy and start panicking because the absence might be deeper and you are struggling to get out of other absences but if you keep taking deeper breaths and keep remaining calm, then you should be okay.

What I didn't know was that every November, Disneyland in California hold an Epilepsy Awareness Day.  This helps people to unite and to raise awareness for epilepsy and helps people to unite around the world.  This year, the day is on Bonfire Night!

I think that's a good thing because it helps to raise awareness!

Epilepsy Awareness Month: Day 15!

My brain has shown how differently it works for different things.  I had yet another absence on Day 15 of Epilepsy Awareness Month and Dad noticed and lifted my laptop off my knee on to my floor.  But, instead of trying to relax myself and get myself out of my absence, all I was thinking about was trying to focus on trying to get back to my music as quickly as possible.

Dad had taken my headphones off and tried to get me to talk to him and all I was doing was looking straight past him and focusing on getting back to my music!  I was being told to take deep breaths and stay relaxed, but all I was thinking was,

"I want to get back to my music!"

You know, priorities and everything.

Overall, my larger seizures are better.  I'm not having them as regularly and I'm not feeling as irritable so I think that's a good thing and it's also making me feel a lot more alert.  Although the dancing exams are coming up, I don't feel as nervous and I'm finding it easier to remain calm even though I have a lot of dances to remember.

I tend to walk into the exam hall feeling as if I've forgotten my routines, but once I hand my papers over to the examiner, I remember my routines again and I feel better.  I know that everything will be fine, even though at first I have my doubts!

I will always feel hesitant to get a driving license though...

Epilepsy Awareness Month: Day 14!

I'm sad to say that after SIX DAYS straight of no absences, I had an absence tonight whilst watching telly!  I was so close to having an entire week without a single absence and one just crept in at the last second!  I wish that I had the opportunity to get through one whole week with no absences at all, but I am glad that I managed to last for six days.

We had dancing today and luckily for me, I didn't fall in a pile of leaves and get myself covered from head to toe in mud, leaves and rain!  I didn't have any absences whilst I was at dancing and I got the chance to dance all of my dances to the right music.  This meant that I got the opportunity to get a feel of the music ready for the exams.

Next week, I'm going to take my camera so I can remind myself to get Emma to record me dancing all my exam dances so I can practice them at home.  That's how the Strictly Come Dancing professionals practice their dances!  They record each other and watch the routines and practice them through!  It really works!

I'm changing my exam dress this year.  This will be it!

My graduation dress!

This is the picture I am going to attach for today!

That's what scared me the most when I found out about my diagnosis!

Epilepsy Awareness Month: Day 13!

It may be Friday the 13th, but it's certainly a lucky day for me!

Now, I'm not that superstitious, but on Day 13 of Epilepsy Awareness Month, I didn't have any absences at all!  I guess that is pretty good, because my dancing exams are coming up and I'm trying to remain calm.  Well, I always try to remain calm when my dancing exams are approaching because of the big seizure I had before my actual dancing exams and it took a lot of make up to cover up the mess that was caused from my tonic-clonic seizure!

I'm never as confident about my ballroom exams as I am about my Latin american exams, but I am determined to do both of them because I want to get the same feeling of achievement.  On the last couple of weeks, we always tend to do our dances to the actual music so we all get an actual feel of what the music will sound like when we are dancing to it.

At least we aren't doing our dancing exams on Friday the 13th!  I've said before, I'm not a superstitious kind of person, but it will still be in the back of my mind!

I will attach a picture for Day 13 of Epilepsy Awareness Month!

Just imagine people constantly talking in the background!

Epilepsy Awareness Month: Day 12!

It's Day 12 of Epilepsy Awareness Month and it's also time for Children in Need!  It only seems yesterday that I was watching Pudsey on the telly last year and now I'm watching it again!

This time, I'm watching Sir Tom Jones and Rob Brydon perform songs from The Jungle Book!  I know that Strictly Come Dancing are doing a Children in Need version so I'm looking forward to that!  I would love to perform as a professional on Strictly Come Dancing, but I know that there is a risk of having a seizure.

The change in my Clobozam is still going well.  I haven't had any absences today so I seriously think so just that small decrease is an improvement and it isn't just psychological!  I'm going to attach today's picture!

I am going to add this, but I don't need to think about kids yet!

Epilepsy Awareness Month: Day 11!

Hi everyone!

I can't believe it, but my absences are getting a lot better recently!  My doctor only decreased me by 5mg on one type of my medication a couple of days ago and they have already stopped!  I'm unsure whether it's just a psychological thing, but over the past few days, I haven't been having any absences.  It's so strange!  I'm not complaining though.

I am trying really hard to get into the Christmas spirit this year, but everything has been really hectic.  We've left everything until the last minute and I'm watching all of these Christmas adverts come on to the telly and I can't believe that Christmas is coming so soon!  It will only be a matter of time until we'll be digging our Santa hats out and we'll be tying tinsel around our wrists ready for our dancing Christmas party and it'll be time for our dancing Christmas party!

In my mind, it's still the beginning of November, when in a few days, it will be the middle of November and when it's the 16th November, it will officially be "late November" and we will have to prepare our advent calendars.  You're never too old for an advent calendar, no matter what Emma says!

I will attach a photo to the bottom of today's entry!

Climbing the stairs by yourself is an annoying one!

Epilepsy Awareness Month: Day 10!

Hi everyone!

I got home from work to find that I was being moved down from my Clobozam so I could cope a little better with a different type of my seizures.  We think that the side effect of Clobozam could be affecting my falls, so hopefully, bringing down those levels could make my falls better.

A lot of people think that the more drugs, the better.  However, for me, I feel like a lot of the drugs I take put me into an overload and affect me in a negative way.  But, when you fall into a pile of leaves and are wet from head to toe you don't really want to be on a high level of Clobozam!

Hopefully, we have got the Clobozam right and we won't need to change it, but we have a doctor's appointment coming up in December, so maybe that will help my medication a bit more!

Here is my picture for Day 10!

This is why I have to sleep for about two days!  It's exhausting!

Epilepsy Awareness Month: Days 9 and 10!

I got to bed last night only to find that I hadn't done my blog entry for the ninth day of Epilepsy Awareness Month!  So I am going to do what I have done before - I am going to do the ninth day this morning then I am going to do the tenth day tonight as I separate entry so I can keep up!

It turned out that the absence that I had yesterday seemed more like a tonic-clonic (bigger) seizure, so I found it pretty tiring.  It also made me feel as if I didn't want to do anything and made me wake up with a headache, so I stayed in bed until Emma got home!  That meant that I didn't get up until 12:45!

I had a pretty good day yesterday - I didn't have any absences!  I think that is the best day I have had so far!  I am going to attach a picture with a fact about epilepsy!

Unfortunately, that isn't an option for me!

Epilepsy Awareness Month: Day 8!

It's the eighth day of Epilepsy Awareness Month!

I have only had one or two absences today, which compared to previous days isn't as bad so at least I can look on the bright side.  As always, I try my best to look on the bright side of having epilepsy, no matter how hard it may be!

I was on my laptop earlier and I was doing a puzzle and the concentration towards the puzzle resulted in me having an absence.  Dad noticed and came over to squeeze my hand and although he was asking if I could hear him, for some reason I just couldn't respond to him.  Then I think he started recording me having my absence!  It went on for ages and because it wasn't a lighter absence, I couldn't stop myself from going into it.  When I eventually responded to what he was saying to me, I could only really respond really quietly!

Unfortunately, I was also watching a video online and I missed a massive chunk of it, so I had to rewind it so I could have a recap of what was being said!  But, on the other hand, at least I haven't had any falls today!

I will attach a picture that is connected to the type of seizure that I had today!

The moments of going blank are what I had today!

Epilepsy Awareness Month: Day 7!

I had dancing today!  I felt like it was going extremely well until right at the end when I was walking out.  Well, to be honest, my body turned against me last night!

It all started when I was going to bed and I was doing the whole brushing teeth and going to the toilet part.  My knees decided then that they were not going to be very nice to me and they gave way and I ended up on the floor in the bathroom.  The floor space in our bathroom is a little limited, so I resulted in being curled up on the floor.  My hip is also bruised and I bumped my head on the bath.  So that was my night last night!

I had the whole "Are you sure you want to go to dancing?" speech by Mum and I did the whole ignoring thing and went anyway and in the end I'm glad I went.  Until I started walking through the car park!

This morning, I walked out of dancing pretty happy with how my lesson went.  I didn't have any absences, which had surprised me because the exams are getting nearer and I didn't even have any absences or moments where I panicked in our Mayfair Quickstep!  But then it ended up as a bit of a delayed reaction, because I fell in the car park.  In the rain.  In a pile of leaves.

We came to the conclusion that I had an absence and fallen, because one second I was walking through the car park, the next second a man was stood next to me with his hand on my shoulder saying "Are you alright?"  My trousers, shirt and hoodie were covered in rain and leaves and I have a grazed knee.  So, all in all, these past couple of days weren't going too well!

Happy Bonfire Night!  As usual, we are staying inside and not going on to the fireworks on our embankment which I suppose is a blessing because that means it is more likely that I will fall over!

Here are some good first aid epilepsy tips for you!

Epilepsy Awareness Month: Day 6!

It's the sixth day of Epilepsy Awareness Month!

I am still wearing my epilepsy awareness wristband, but the notifications of any retweets or favourites about the importance of people knowing about epilepsy spreading around Twitter has stopped now.  I am considering perhaps starting it again to try and spread the word even more!  There must be more people willing to spread the word and I am determined to find them, even if they do end up fed up of me!

I'm disappointed that I have lost my epilepsy awareness badge, but at least I still have my wristband!  I'm beginning to advertise my blog on Twitter, so hopefully more people will be able to find my blog and read it.  I am hoping that this blog can help people to gain more information about my blog and use it to help other people

My family are watching a television show that (to be honest) makes me feel really stupid so I try and avoid it.  Unfortunately, I ended up watching it tonight, so it gave me the chance to show that I really prefer comedy shows!  I haven't quite proved it to them yet but hopefully they will notice soon enough!

It's dancing tomorrow, and I tend to have a couple of absences while I'm at dancing, particularly when it's near to the exams.  However, it is the exams soon and I have a lot of exams to lock inside my head but fingers crossed I will be fine.  Nope, not fingers crossed, I will be fine.  There are amateur dancers who do one dance in front of 10 million people every Saturday on television!  I only do a few dances every 6 months in front of 1 person!

If you believe you can do something, you can do it!

Here is a picture with a couple of facts about epilepsy underneath!

That's a lot of people!!!

Epilepsy Awareness Month: Day 5!

Hi!

Seeing as I had a seizure yesterday, we realised that it would be better if I had a day of rest and relaxation today.  To be honest, I was planning to sleep until the afternoon because of how tired the seizures make me become but for some reason, I woke up at a normal time this morning!

I spent a lot of today in the house by myself so I took the opportunity to just sit on my laptop and do nothing.  I think I need a second night to sleep off how much energy my seizure took out of me, particularly because of how much it drained me.  When I have had previous seizures, I have gone to bed and woken up at 2 o'clock in the afternoon so it was a surprise when I woke up this morning!

It does take me a couple of days to catch up on sleep after seizures, so hopefully tonight's sleep will help me to catch up on how much sleep I need for a seizure.  I have had to edit this post because I keep making spelling mistakes due to how tired I am!

Hopefully I will post better tomorrow when my brain has caught up with me!!!

Bye!

More people have it than we think!

Epilepsy Awareness Month: Day 4!

Hello again!

I was thinking earlier that not a lot has happened today and I didn't know what I was going to put on my blog, even though I posted earlier today with what happened yesterday.  But then my body decided to go and have a seizure.  It had been three months since my last tonic-clonic seizure - I was doing really well.

I don't know whether all reactions to seizures are the same - mine are that I start to get headaches, I begin to feel sick, I start to cry and I feel tired.  So my body has experienced all four of those tonight.  Ah well, I'm dosed up on painkillers and the headache and feeling sick has gone away.

I don't know whether anyone else has those side-effects but sometimes I feel like my skull has been rattled about in my head.  I read in a book that I had been given by my previous epilepsy nurse once that having a book is just like your brain coughing, and to be honest, I've never experienced my brain coughing before.  But it sounds painful.

Apparently, having a seizure uses the same amount of energy as running a marathon.  I never thought of it in that way before.  I have watched marathons on television before and to think that seizures would use the same amount of energy is pretty surprising.

Anyway, I feel like my limbs are aching and I am a bit tired so I think I am going to go to sleep now.  As usual, I will attach my sister's photo underneath!

This shows some of the many types of seizures when it comes to epilepsy!

Epilepsy Awareness Month: Day 3!

I got myself so busy yesterday that I forgot to post in my blog!  This is because I am a dipstick!  Anyway, because I forgot, I'm going to do one post this morning to talk about what happened yesterday (Day 3) this morning and then I will do one post tonight that will talk about what happened today (Day 4).

So, yesterday was a day at the charity shop.  I was on the till serving customers whilst also discretely looking out for people who I knew so I could have a little chat with them!  Someone wanted a mini chair that was hidden behind something which meant it was jammed so I couldn't at first get it out!  Also, someone wanted a dress off a mannequin in the window which meant from the middle of the afternoon to closing time there was a naked mannequin stood in the window.  I was stood there hoping that no one would notice!

There are still a few people retweeting me and favouriting my tweets about Epilepsy Awareness Month, but all in all, those tweets calmed down since yesterday.  I'm really happy that I helped to get the message out there, and hopefully, other people will too.

This is the picture that Emma showed for Day 3.  I will show Day 4 later on!

See?  We will always be special!

Epilepsy Awareness Month: Day 2!

Hi everyone!

I never thought that my phone would go so berserk because of a few tweets to do with epilepsy awareness that I sent out to some celebrities!  I sent a tweet to a newsreader and he retweeted it plus I sent a tweet to Kym Marsh and she retweeted it!  Then, loads of other people started to retweet my tweet because they follow them!  I just couldn't believe it.  I also sent a tweet to Simon Cowell and Olly Murs but I knew that getting a retweet from them would be a little ambitious!

I am a bit disappointed because I didn't manage to find my epilepsy awareness badge.  I checked all over my desk and in every trinket box in my room but I never found it.  But, I managed to find my epilepsy awareness wristband so I managed to wear that all day today!  I am determined to track down that badge though because knowing my luck, I'll buy another one and by the time it arrives, I would have two identical badges because I'd have found the one I already had.

Emma is doing her bit for Epilepsy Awareness Month.  She is making pictures for every day of November that gives different kinds of information about epilepsy and she's sharing it on Facebook.  Hopefully she won't mind if I borrow one of the pictures with no intention of giving it back without asking for the blog!

It's time for me to go now.  Mum's off to bed, which means I'm off to bed because she has to watch me up the stairs in case I fall down them and have a seizure.  See you tomorrow!

My picture!  Thanks for letting me "borrow" it Emma!

Epilepsy Awareness Month: Day 1!

Happy Epilepsy Awareness Month, everyone!

That's right, it is officially the first day of Epilepsy Awareness Month!  I feel as if it's important to spread awareness about epilepsy through putting lots of messages on Twitter and bombarding my favourite celebrities with tweets, asking for retweets!  It has worked before!

A live update - my Twitter feed is being bombarded!  Two of the professional dancers from my favourite television show have retweeted AND favourited me!  My day has been made so much that for a little while, my hands were shaking!  I don't think I have been that excited before!  I am using too many exclamation marks!

The main colour for epilepsy is lavender, and our whole family is spreading the awareness by wearing badges with purple ribbons on and we are showing lots and lots of purple and/or lavender.  Basically, the more similarities to lavender the better!

I'm hoping to be updating my blog every day this month due to this month being Epilepsy Awareness Month, plus I have a purple badge that says "I WEAR EPILEPSY FOR ME" so I will be wearing that on my shirt.  My lanyard at work is also purple so it's actually meant to be!  I even marked the occasion by having an absence today in the car, but ah well, I like to do things in style, don't I?!

Anyway, time for me to go now!  I hope to update tomorrow, without as many exclamation marks!  But in my defence, I'm incredibly over-excited!

Temper!

Happy Halloween, everyone!

I felt that it was only fitting to update my blog on Halloween!  Also, I haven't updated my blog in a while and I have quite a bit to put!

I've had a couple more absences today, but they were a bit lighter so it wasn't so bad.  Mum asked me if they were lighter or darker absences, which I think is very fitting for Halloween!  My head tends to shake quite a bit whenever I have absences.  It tends to get a bit annoying - I guess it's a bit like a tonic-clonic, except it isn't my entire body that's shaking, it's just my head.  Plus I'm fully conscious.

I am becoming quite irritable at the moment.  We don't know whether it's due to having a bad temper or the side effects of my medication.  I have always had a short fuse but I feel as if it's getting worse.  Yesterday, I seriously snapped at my sister.  She wanted to read something to me that she found on Facebook but I was concentrating on something else and didn't feel like listening to it.  Instead of saying "No, I'm good, I'll read it later", I just said "No".

Emma continued to read them though, saying "Not even...?" and then read some quotes that I can't remember.  Suddenly, I just snapped and shouted at her, going "EMMA, I SAID NO!"  I think it was a surprise to her and I don't think she quite knew what to say to me after. I hadn't treated my sister like that for as long as I can remember, and although I felt myself shaking, I regretted it almost immediately afterwards.  I had gone upstairs for a bath and my emotions just took over and I just said to Mum "I shouted at Emma earlier" and burst into tears.

The fact that I had snapped at Emma had never affected me that badly before, and I didn't know why at first.  However, looking back at it, I think it's because of the medication that I am on.  Some people think that the more medication that they are on, the better things will become, but for me, it's the opposite.  I think that I'm on too much and I think that I need a decrease in my medication.

We realised that I never shout at people I'm not close too, it's always my family or people I know really well.  For example, I would snap at my family (not as bad as that night with Emma), and once I had a little snap at one of my friends at dancing, but I had known her for twelve years and I could just about control it.  However, I would never get angry at people at work.  It's almost as if my body is amazing at controlling my brain, but then my brain would know the times it can explode.

For once, I actually can't wait until my hospital appointment in December!

I WISH IT COULD COME SOONER!!!

A Saturday Fall!

Hello fellow bloggers and blog readers!

It's Saturday today which means one thing and one thing only - DANCING!  However, nothing goes smoothly, does it?  Turns out that I had yet another fall today.  What is it with me and falls on Saturdays?  I've only just gotten rid of my bruises from my face plant before dancing, and now I have another bruise!

Luckily today it wasn't a face plant and I landed on my back with my dressing gown cushioning my fall and I just have a little bump on the back of my head that will probably show up tomorrow.  It shakes me up a bit and Mum did her "You don't have to go to dancing today" speech, but I went anyway.  After all, it's the dancing exams coming up and I need to be at as many lessons as possible.

I never tell the charity shop about when I have my falls.  I still feel as if I have the risk of being dropped from working at the shop if they find out I have any falls so I am under the mentality of what they don't know won't hurt them.  Once, when I had a funny turn at the charity shop and it was quite soon after we got back from the holiday, the manager asked me if I had any seizures within the past few weeks.  I thought back to the holiday when I had my seizures and my psychosis and then just said:

"No."

I know it isn't the 100% truth and I should have told them the truth, but I am a bit paranoid about it in case the charity shop might drop me.  I tell the teachers at dancing because I know that they wouldn't freak out.  They even let me take two dancing exams an hour after I had a tonic-clonic seizure!  Funnily enough, they were a bit hesitant at first, particularly after they saw my bitten lip and bitten tongue and the fact that I was constantly yawning, but I insisted that I was fine and they let me take the exam!

Sometimes, people may think that you are just plain stubborn.  But you sometimes have to insist that you are just plain right – even if you do have to resort to drastic measures!

 Me and some of my trophies!

A Link About Epilepsy!

Hi!

My friend sent me this link about epilepsy that some of you may like.  It is actually pretty educational, which is why I am going to attach it underneath.  It made me smile as well, because it put a bit of humour into it.

http://www.healthmojo.org/2015/10/20/5-reasons-life-with-seizure-epilepsy-is-weirder-than-you-think/


It shows that television doesn't give accurate information about epilepsy and there is more to it than meets the eye.  For example, some people think about seizures are just caused by flashing lights and not all of them are caused by flashing lights.  In fact, there is quite a small percentage and my epilepsy isn't affected by lighting of any sort.  It's actually caused by stress, tiredness and excitement!

I hope that if you get the opportunity you can have a look at this because even though there is some humour in it, it is actually very informative and you can learn a lot from it.

Hope you like it!

Nina Conti!

I jinxed it last night!  I only had one absence and then I fell, bruised my right arm on the sink and hit my head on the bathroom unit!  At least it was just a little scratch!

Tonight was a brilliant night!  We went to see NINA CONTI!!!  Nina Conti (if you haven't heard of her) is an amazing ventriloquist who has this monkey puppet called Monk and he picks on people in the audience and makes fun of their jobs!  She has these masks that she likes to put on people and gets them to stand there whilst she did different voices for them with different accents!  It was brilliant!  I'll put a picture up of the stage but it was amazing!

I had quite a deep absence in the car before I went and whilst I was there but I think it was the adrenaline of being there and it was only during the interval so I didn't miss any of the performance.  During the absence, I did feel quite panicky because I was wondering when I was going to get out of the absence.  Whilst I was watching Nina Conti perform, I had a couple of lighter absences but I managed to, sort of, control those so I could still watch her perform and not miss any of her performance.

All in all, it was an awesome night and here is my picture to prove it!

My Graduation!

I GRADUATED TODAY!!!

Oh, but firstly, hi!

I had to go to the Albert Hall in Nottingham and get myself all robed up with a hat and get my picture taken with a scroll and stuff so we had to show up pretty early.  I ended up getting pretty warm too because I was wearing a pretty thick dress as well but I managed to survive for an hour or so!  I bumped into my tutor as well!  That wasn't awkward at all!

I really confused the woman who was sorting the hats because when we were ordering robes and hats, we measured my head and we thought that I needed a large hat and I told her that I needed a large hat but she got me to try one on but it was far too small!!!  I tried the extra large too and it fitted well but that was a pretty snug fit as well!

Mum went photo crazy today.  I felt as if there was nowhere to hide because she was permanently stood there with her phone, ready to take photos for Facebook!  Not only that, but there were professional photographers wandering around as well taking photos of the event too!  Mum was taking a photo of me and Emma stood in front of a vase of flowers and a junior photographer suddenly jumped next to her and started taking photos of the two of us too!

I was sat with the other graduates today to find someone who I went to secondary school with (I think Mum took joy in watching my look of horror as I recognised his name in the leaflet I was given!).  I also saw someone from primary school who I haven't seen in nine years so that was a bit strange!

I am very proud to say that I am the first person ever to get a Higher Education Certificate in Children and Young People's Services!  I was the only person to graduate from that degree which meant a long introduction by the head of faculty with me stood by the stage with my legs feeling more and more like jelly!  Eventually she introduced me and I managed to walk across the stage, shake hands with her, get my photo taken, and get back to my seat.

I ended up agreeing to a video interview so I told the interviewer beforehand that I have epilepsy so I might zone out during the interview.  I then saw a light bulb click on in her head and she immediately said:

"Before we start... can I ask... did you get any additional support with your degree?

Anything to spread awareness!

I have to say when it comes to my absences my timing is amazing!  I didn't have any at all before the graduation, or when I was sat in my seat or (thankfully) when I walked across the stage to get my scroll, but when I met up with my family, I immediately had an absence and felt really wobbly!  And I don't think it was the heels on my shoes that made me wobbly!  I think it was the adrenaline of the day and the relief that I didn't have any absences whilst walking across the stage that made me have the absence but it only lasted a couple of seconds and someone immediately gave me some water, thinking that I might have fainted, but I was fine!

This proves that you can do anything and everything, no matter what you do!  Even if you have epilepsy, you can still graduate with a university degree, and here are the pictures to prove it!

  

                                    

A Deep Absence!

Hi!

It's been discovered that I am good at jinxing things!  I said yesterday that I had gone two months exactly since having a tonic-clonic seizure, but later on that night, I had a deep seizure.

According to my parents, it wasn't an actual tonic-clonic seizure, it was more of a really deep absence.  But it felt like a big seizure because I felt so tired afterwards, I felt like the after effects of my deep absence was forcing my eyes shut.  It resulted in me having to go to bed and sleeping until 11:15!  That's what I call a lie in!

Having a seizure of any sort is the equivalent of doing a marathon which is a disadvantage in lots of ways - the energy draining out of you, crying, feeling sick from being so tired, your limbs being so heavy, wanting to talk but not having the energy to so just talking jibberish...

The advantage of having a deep absence was that it didn't count in the number of tonic-clonic seizures I have had, so I can still focus on the fact that my last tonic-clonic was on holiday in August.  But I know that everything will be fine.  If I believe that everything will go OK, that it will go OK!

More information on absences

Two months seizure free!

I've got some good news that I think I should share on here.  I am two months seizure free today!  Fingers crossed that I can go longer than two months but before I have marked an anniversary with a tonic-clonic seizure!

I am taking each day a day at a time, but I have my graduation soon so hopefully that will go smoothly!  But I have the mentality that if something will go well, it will go well.  We measured me for my gown and my hat for my ceremony, and when we measured my head for my mortar board, we found out that I will need a large hat!  But that's not because I have a big head, it's because I have a BIG BRAIN!

So I'm raising an invisible glass to two months seizure free, and I hope you will too!

Seize the day!!!

The Charity Shop!

Charity shop today!

I volunteer one afternoon a week at a charity shop doing normal stuff that a person who works in a shop does - I tidy up stock on the shop floor, I work in the stock room pricing things and I work behind the till (I still haven't gotten the hang of the money yet!).  I always end up bumping into people who I know - last week I bumped in one of my neighbours!

They almost didn't allow me to work at the charity shop because once whilst I was there I had a fall and the next day they called me and Mum in for a chat and they said that maybe it would be best if I didn't work there any more.  Luckily for me and unluckily for them, I studied The Equality Act and The Disability Discrimination Act three times whilst I was at college and it is actually against the law to fire someone because of a disability and it's against the law to discriminate against someone with a disability,  We spoke to the regional manager and six months later, I am still working at the charity shop!

Today, we had two scooters and a mini tricycle come in and we planned on having a race back home!  Strangely enough, it didn't happen!  But we felt that it was important to test the scooters so we rode them through the shop floor to check that they worked!

It's always worth trying everything out!

Shoe shopping!

It's my graduation on Saturday - YAYYY!!!  Me and Mum went into town today to buy some shoes and stuff ready for it so we are all prepared!

We went to this place called Annie's Burger Shack and they had the world's biggest burgers!  I love burgers, but the one I had even beat me.  I definitely couldn't manage pudding today, it was massive!!!  They had one burger called The Elvis and it had peanut butter and jam on it - who has peanut butter and jam on a burger?

We were for once lucky with the buses, but then I went and had an absence at the bus stop so Mum had to wait with me and also hope that the bus didn't drive off while I was having an absence!  Luckily for us, the bus waited and we managed to get on the first one!  The disadvantage of having absences at bus stops - the bus drivers get a bit impatient!

Here is a picture of my burger!

Beef, bacon, sausage and chicken burger with cheese!

A Holiday Hiccup!

Dehydration has always been an issue for me.  I had a few seizures whilst I was on holiday.  I was on a cruise with my family (me, my mum, my dad, and Emma - my older sister).  It was very warm and it was difficult to stay in the shade.  There was also a party on the deck so heat + dehydration + dancing = seizures!

I had multiple seizures that day, and it was only when I got home when a discovered that I had nine seizures!  I came round to find my family and the paramedics putting cold flannels on my face and my arms and my legs.  They were injecting me to try and stop the seizures but I kept going into other ones!  I still have little marks from when they were injecting me, but it was agreed that it was because I hadn't drunk enough that day.  There is so much to do on the ship, you almost get sidetracked!

I couldn't go down to dinner that night, so me and Mum had to get room service whilst Emma and Dad.  I ended up having a psychosis which made me go into a rage and I nearly threw the television remote control at the screen.  Luckily, Mum managed to grab my arm and take the remote off me.  I think it about exhausted me so I just about got some sleep.

I woke up and looked at a glass of water, then at my arm where they had injected me at the deck party and straight away, I looked at Mum and just said:

"Are you trying to drug me?"

She only got me a glass of water!

Luckily, Emma and Dad came back and I had to go and see a doctor.  After that, it was a bit of a blur.  The doctor was trying to give me a tablet to help with my psychosis and I was really hesitant to take a tablet because firstly, it was quite an ominous looking tablet and I thought he was trying to kill me and secondly, he wasn't my real doctor - it's not like my usual doctor could come and treat me on holiday!

All in all, it was a rocky holiday, but I consider it as a hiccup!

Tonic-clonics and face planting!

I had my first tonic-clonic seizure in the kitchen.  I don't know what my brain had against me.  There I was, just finishing my breakfast and my apple juice and next thing I knew I was lying on the floor with my family and three paramedics gathered around me.  My dad decided that he would take the job to tell me about my first seizure.  Of course, he was very soothing about it.  He said:

"It's OK Becky, don't panic, you've just had a seizure."

Thanks Dad.  Thanks for breaking it to me gently.  I was put on a stretcher and into an ambulance, out of the corner of my eye seeing our neighbours coming out of their houses.  Was this an episode of Coronation Street?  Let's see who is coming out of No. 6 on a stretcher?  Meanwhile, my mum had gone and broken her toe after falling down the stairs on the way to call for an ambulance.  My mind was racing with three things whilst I was outside that morning.

1)  What the hell is happening?

2)  Oh great, I'm going to be showing up at the hospital in my pyjamas.

3)  Looks like I'm not going to my dancing lessons today.

That's right, Becky, get your priorities straight.

When I showed up at the hospital, it was like an episode of Casualty!  Seriously, they weren't exactly taking their time with taking the trolley down the corridor.

At least I didn't have to stay overnight.  I was sent home that day after being greeted to quite a few of Get Well Soon cards!!!

My second tonic-clonic was in the bathroom.  I was pretty lucky that day.  One moment I was brushing my teeth, the next I was on the floor, with my head inches from the boiling hot towel rail.  The paramedics were called and (again) I was put in an ambulance with (again) three things running through my mind.

1)  Another one?

2)  Why do I always end up turning up at A&E in my pyjamas?

3)  Look on the bright side - at least I'm missing PE, double Physics AND English today.

My parents were told to only call an ambulance if my seizures were over 5 minutes, so I didn't need to go into hospital after that.

I had one on Halloween - never mind the kids trying to scare the people at their front doors, I scared myself!  I had one at Race for Life, one on a few of my birthdays, some where I just needed to sleep a lot and one where I face planted a wall!  That was an interesting one.  I went dancing after that.  I don't know whether my parents wanted me to go, but I still went!

Katie Price, eat your heart out!

Shaken, not stirred!

I always feel as if the term "shaken, not stirred" can have more than one definition.  When most people - well, probably just about all people think about the quote "shaken, not stirred", they think about the film James Bond.  I am proud to say that I have never seen any of the James Bond films and I am in no position to.  But anyway, I am going off on a tangent.

When I think of the term "shaken, not stirred", I think of epilepsy.  That isn't for any random reason.  If you listen to my reason, you will consider my reason as perfectly valid.  Think about it - if you have epilepsy, you are shaken.  So much, in fact, you feel as if you have a headache.  So, shaken, not stirred, is that a good idea?  Right then, let me introduce myself:

My name is Becky Boulton, I'm 20 years old, and I have epilepsy.

It is actually a type of epilepsy that has a longer name, and a letter was recently delivered to me with the actual name of it on the letter.  However, it is on the dining room table, and I have just sat down after lunch with some chocolate, so I am really comfortable.

I'm joking, I do know the name of the type of epilepsy I have.  I have Juvenile Myoclonic Epilepsy.  It has changed over the seven years in which I have been diagnosed.  It started as Idiopathic Generalized Epilepsy (which is basically what they call it when they have no idea why I have epilepsy).  Then it changed to Juvenile Absence Epilepsy, and then it was changed to Juvenile Myoclonic Epilepsy.

My absences started when I was ten years old and I started glazing over and not paying a lot of attention in class.  I got into trouble with my teacher at first for it because she thought I was daydreaming and just glazing over in class.  Personally I think it was because she couldn't spell and she needed someone to correct all of the words that she spelled wrong on the whiteboard, but that's just my opinion.  My absences last anything from a few seconds to one that my sister said that lasted 20 minutes a while ago.  These continued with my parents and my sister thinking I was just daydreaming.

My tonic-clonics are a bit of a pain to me.  These are the bigger seizures that can last from just under a minute to a little over 5 minutes.  These give me a pounding headache, make me sleep for the rest of the day,bite my tongue until it bleeds and (if I haven't emptied my bladder) wet myself.  Luckily I didn't wet myself on the way to school, otherwise that would've been a little awkward.

I used to have myoclonics, which were where I would suddenly jerk and/or shout out.  Usually I could disguise this as a cough, but it happened in a library once and there was the typical rule in the library where you weren't allowed to talk and I shouted out so LOUDLY everyone stared at me.  I couldn't disguise it as a cough - that was impossible, and I couldn't run away because I needed to finish my work so I just had to try to avoid all eye contact with everyone.  A girl next to me at a computer asked if I was ok and I just had to tell her about my epilepsy and she just said that as long as I was ok just make sure I let a member of staff know if I was feeling ill.  I worked out that I had them due to stress.  I had them when my coursework was on top of me and I had one when my Grandma died so there was a theme.  Luckily I was put on medication where they stopped the next day so that was good.

I have started having partials now where I remember one thing but then I can't remember a period of time until the next time.  A while ago, I had one where one moment I was sat on my bed, the next moment I was lying on the floor moments after an 8-minute seizure where I had face-planted a wall and had a seizure.  My parents have had to put in a stair gate now.  I am not joking.