Remember how far you have come; A letter to my future self

Hi!

So lately I have been feeling a little bit anxious and maybe even slightly concerned about how far I have come since my re-diagnosis of Epilepsy in 2014.

Whilst laying in bed, not being able to sleep I thought I would do something to combat this.  So I made myself write a letter to my future self  telling me how far I have come since my illness and what I am going to achieve in the future.

I always set targets every New Year, I believe its an amazing way to focus all your energy and concentration on the year ahead and not get distracted by your disability.  But I thought this letter would serve a greater purpose. I can look back on it and realise how far I have come when things seem a little bit tough.

Although this letter has come a little bit  earlier this year but I feel it is something I should share in the hope it may inspire others to keep fighting regardless.

” Dear future self

Through no fault of your own you had developed Epilepsy as a child at the tender age of two  alongside night terrors  and this meant you  were delayed in writing and education. You were told you would amount to nothing and that there was no hope for a future without Epilepsy ruining it.

But guess what? You defined all the odds by  leaving school at 15 with 5 GCSES, going on to achieve 4 A-levels at college all with Distinctions, 2 degrees in law
and a postgraduate certificate in education.

You then battled being re-diagnosed with Epilepsy at 23 and went on to suffer from REM sleep disorder, night terrors, dystonia, nocturnal epilepsy,  an ectopic heartbeat and IBS.

Despite this by the  age of  24 you had already designed and maintained your own education business,  at 25 you became a professional maths lecturer alongside a self employed law tutor and at 26 you had already presented at a teaching and learning conference for professionals.  You had  also already gained 100 hours teaching practice
and aced 8 formal teaching observations being pronounced as a grade 2 teacher with outstanding qualities and passing on with a 2:1 in professional education.

You have also already been successfully running  your business for two years now and have went on to become a fully qualified legal professional.

You have already been a club runner of six years winning first female for the club on your  very first half marathon .  You have already  won numerous awards including work for domestic violence, volunteering and charity work.  You have managed to raise £500 for the  Young Epilepsy Foundation, created your own charity run from the age of 23 and earned 5  karate belts in the space of 18 months.

You have already snorkelled with sharks, solo travelled around Kos and Rhodes, free fell 200ft over  sea level in Blackpool, jumped off waterfalls in Spain, Snorkelled in the Spanish sea, dived off a boat in the Dodecanese ocean and  will have Scuba Dived at a secluded bay in Rhodes. You have already travelled to Spain 3 times, Greece 3 times and  travelled to Turkey by boat and you have even photographed a Spanish christening.

In your 26 years you have touched many peoples lives by becoming an Animal care worker,  Mental health support worker, Auxiliary nurse,  Teacher, Legal professional and Managing Director of your business.

So listen to this:

By 27  you need to have faith that you will have already completed that ten week course in Spanish that you have already enrolled on   and you will have gained that  house  that you have always wanted to share with either a partner or a friend.

You will be in a full time career that you love whether it turns out to be re-training in something completely new an option which you have considered for a long time or carrying on as a teacher of law.

You will carry on fundraising for Young Epilepsy and making a difference in peoples lives and you will  go on to eventually hit that £1,000 target you have been striving for.

You will live a full-filled  life and you will carry on with your spirituality and be at peace with who you are, and what you have achieved in this lifetime. You will be off the   medication that you feel an attachment to and you may even be learning to drive for the first time. 

Please do not forget to look back on  your journey. Each day is a gift. You are never promised tomorrow. It is not the cards you are dealt with it is how you choose to play them”

It was emotional writing this letter to myself but not as emotional as realising I have so much more to live for.

Don’t give up the hope.

J x

 

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Sometimes it hurts..

Sometime it hurts … badly!  I am not normally one to complain about aches and pains from my dystonia/epilepsy but tonight it really bloody hurts!!!.

My clonazepam has started to wear off in regards to dosage so now I am not getting through the night without any episodes or night terrors/epileptic attacks and today my whole body is just aching from head to toe.

I havent trained tonight which is quite frustrating as I really need to be keeping on top of my progress in regards to future events I want to partake in this year.  My co-ordination has been horrific during my sports and its taking me longer to pick things up or to learn new techniques.

I am not one too give up when things get tough so I definitely it think it will wear off eventually.  I hope it wont impact on any training or work related activities for much longer as I am finding it harder and harder to focus on anything.

SO glad most people are understanding when I call them by the wrong name, forget their face or think they are someone else LOL.

Fingers crossed for a better February!

J x

 

 

A month on Clonazepam

Hi Guys,

As most of you are aware I started my new medication alongside my Keppra just before Christmas for my seizures during the night. I thought I would do a little update on how it feels to be on these tablets after 4 weeks of the initial onset.

To be honest I cant lie and say its been easy.  Clonazepam is a horrible drug and how anyone can be dependent on it is beyond my recognition because I don’t like the side effects at all !.

To start with it made me feel sick and I lost my appetite and I felt generally awful.  I wanted to sleep all the time and getting out of bed was physically impossible for me .  Its also given me acne again and dry skin.  I still struggle to get out of bed and this will be my 5th week because it puts me in such a deep sleep i swear I cant even remember going to bed or falling asleep on a night .

However it has fully stopped my seizures so far on a night. I have only had one episode in four weeks which is amazing and the ones I were having before were pretty horrific and made my body feel like it was on fire for days.  So I feel like being so tired is a small price to pay for being seizure free(ish).

I know that it can also be used for anxiety which is something I have never suffered from so could not really comment on the “relaxing” effects of it but I know that if I take it too early before bed I am just sleepy and cant focus and then I am asleep 10 minutes later.  This is also partly to do with the fact I take synthetic melatonin aswell.

All i would say is if your neurologist or consultant is considering prescribing you this then you need to really think about whether the benefit will outweigh the side effects.  Its a strong medication which can seriously alter your day to day life.  If taken, proceed with caution and never take more than your stated dose.  I am on 1/2 of a 500microgram tablet and that to me knocks me for six,  if you take a whole tablet by mistake, do not fail to ring your GP or urgent care center immediately.

J x

2017 Goals!

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Hi guys,

So I thought now would be a good enough time as any to talk about my long term goals for 2017.  First of all I can not believe how quick another year has gone and flown by. It only seemed like yesterday I was writing my goals for 2016!

So really what I would love for Christmas and I really thought the graphic up above was quite apt, is a cure for epilepsy – not just mine but for every other sufferer young and old!.  However, this is definitely not going to happen anytime soon (I dont think!) so I thought I would write some of my long term realistic goals out.

So for 2017 my number one goal is to finish the last of my education ( que 6 years at university!).  I have undertook my Professional graduate certificate in education to qualify as a teacher in further education with my subject specialism of law. Granted so far it has not been without its struggles and I have probably had more days off than on the course but by some miracle I have still managed to pass all my work so far!.

As some may know the one and only thing that really keeps me sane is sports and art.  This year I took up bodybuilding (July 2016)  karate (April 2016) and gymnastics (August 2016).  Some may wonder why would I take up all of these sports? well when you have epilepsy and you feel like rubbish the last thing you want to do is mope around the house!.

These sports have given me a new lease of life after giving up running in 2015 due to being far too ill to carry on running.  I came to a very sad decision that the more I ran the more it induced my seizures and after six year I gave it up after doing the Redcar half marathon as a final farewell!.

In regards to sports by the end of 2017 I would love to be between a Green and Blue belt for karate so I can start working towards my brown belts and eventually my black in 2018.  I would love to compete in a toned bikini competition summer 2017 just for the experience and joy of doing what I do and I would love to reach my level 1 in gymnastics.  I can not do gymnastics for competition because my epilepsy hindered my ability to have sufficient co-ordination, balance and focus but I love the flexibility of it and being able to work towards a grade.

In terms of art I have been too ill for the past few months to put pen to paper so que this blog I have just gone on Amazon UK and spent up on new art supplies.15085569_10154712433422363_624794708793761271_n

After winning an award for my photography this year (Highly commended 2016 BrightWater) I felt re-inspired to get my paints back out and so this is what I will do !

Last but not least, I will raise more epilepsy awareness this year.  I plan on doing lectures in college on epileptic first aid and my charity run should be up and running for the 3 year !!!.  I have no doubt this will all happen and if anyone knows any colleges/schools that would like this free of charge please do not hesitate to contact!.

I really hope everyone elses 2017 will be as bright and beautiful as I believe mine will be and always remember to kick epilepsy’s butt – never let it kick yours!.

J xx

 

Frustration is inevitable.

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Tonight has probably got to be one of the most frustrating nights I have ever experienced.  My epilepsy has not been getting better lately, in fact much worse.   My last neurology appointment was spent discussing ways in which I could control the new seizure activity that I was experiencing on a night and sometimes during the day.    Tonight I did my usual routine of going to the gym straight after my teacher placement.  I felt absolutely fine and I was raring to go.   However it seems my epilepsy had other plans for me .

Within 30 minutes of starting my session my left side had decided to give way on me, this meant every time I tried to lift a weight it just ended up being lopsided and I ended up dropping it.  Not being one to give up I insisted on keeping going (big mistake!) and I ended up feeling spaced out which normally means a seizure is imminent!.

Within 5 minutes of sitting down I got back up to re-start and I just blacked out for maybe 5 seconds.  I dont really remember much but my boyfriend catching me as I fell.  I definitely was not with it and it took me a good few minutes to come round.  I eventually had to admit defeat and go home early!.

This is probably only the second time I have had an episode which  never normally happens during daytime.  This evening  was the only time in a long time I have ever felt like crying my eyes out and I am not ashamed to admit that.  It took alot for me to reign my emotions in and I definitely felt angry and frustrated at what i now call “one of my bad days”.

I have just started clonazepam on top of my keppra which will hopefully kick in soon and I may be controlled for a little while longer.

I have always said giving up is not an option and I still refuse to back down.  Everyone has advised me not to go to the gym by myself, to be careful , dont do too much etc but I refuse to give up without a fight.  There may come a day when I do have to stop and I do have to give in and admit defeat but today will not be that day.

What tonight has taught me is that the support network I have is amazing and I could not cope without it. I am lucky to have amazing neurologists (I have two!) and amazing family, friends and partner.

Heres to hoping 2017 will be a seizure free year!

Jx

 

 

I Graduated !!!

 

Hi Guys!!!

I am so excited to tell you I completed another step in my journey- graduation as a master of law.  I can not begin to tell you how proud I feel of myself and my journey to get to this point.

I can not lie and say it has been easy. Infact its been extremely difficult and at one point I remember sitting and crying on my bed, telling my mother I did not see the point in it anymore and I was going to fail and I wanted to give up and give in.  Probably not one of my finer moments but I wont pretend we dont all feel like giving up sometimes.

Often I will sit and reflect on my life and even the missed opportunities that epilepsy took away from me – I do sit and think sometimes what my life would of been like if i had been a healthy person and could I of achieved better? higher? reached further?.

As an epileptic I probably speak for most when I say we all have self doubt and deep reflections.  But graduating with my masters made me realise that I have come so so far then I ever thought possible.

At my worst point of my illness I could not even work, I could not study, I did not even see myself holding down a job in the near future.  Now I have a masters degree in law, my own business, a job as a maths teacher and an amazing placement teaching law on a public services course at a college which has supported me through everything.

I guess what I am trying to blog and get across is that when I/ you feel like everything is crumbling and epilepsy has stolen something from you life, take a minute to reflect on what has actually gone right in your life , what has made your more determined to succeed,  how have you managed to defy your illness?.

Dont let anything hold you back, as I said to one of my peers today ” you have to take a great fall before you can get back up fighting”.

 

J x

 

Clonazepam and uncontrolled epilepsy.

Hi Guys,

I can believe its been 5 months since my last post. So last time I wrote I was undergoing sleep tests, lumbar punctures and neurology reviews.  I had a lot of undiagnosed symptoms which were a huge concern for myself and everyone around me at the time.

One of the most scary things to happen to me lately is a new batch of epileptic attacks on a night.  I recently started noticing them a few months ago and passed them off as part of my sleep disorder but after an initial sleep study, the scary reality has been confirmed that I am actually having seizures again!.

This has made me sad as I have been relatively okay after my dose of Keppra was moved up to 1500g but now after a review it seems I will need to start on Clonazepam as well as Keppra and Circadin (synthetic melatonin).

I am not entirely sure what kind of seizures I am having but I think they may be tonic seizures.  Basically I wake up paralysed in a black darkness and I can feel my body thrashing around in bed and if some-one is there I can hear them try to talk to me, then I black out and eventually wake up dazed and confused.

These have been happening a lot probably a couple of times a week, so much now I have to keep a seizure diary to see what is occurring and to ensure I do not injure myself. (cue the baby proofing of my bedroom).

I believe it is easy to get down about these things and think that you are the person who is worse off than anyone else but I had a little though that if a person with cancer was given the chance to live a full and complete life but had to suffer the side effects of cancer for the rest of their life they would  agree no hesitation, so really I am been given  a chance to live a full and complete life with a few adaptions either way.

One thing that has made me realise is that I would like to educate people more on Epilepsy in schools, colleges and universities.  Therefore I am going to try and make a pledge to go around as many educational establishments as possible and raise awareness as much as I can in 2017.

I hope then it will give me a fresher outlook on my diagnosis.

Love J x