Epilepsy – the invisible illness

Hi everyone,

I thought I would write a little about Epilepsy and how it seems to of become an invisible illness regarding everyday living. 

I have noticed lately through my own experiences and from other people’s perceptions that there are things we could do to prevent this.

The first thing we need to do is to understand that people with Epilepsy are classified as “disabled” under the Equality Act 2010.  Because of this very important piece of legislation we have been given the rights of any other physically disabled person.  This means that we can use disabled toilets, we can get a guaranteed interview under the two-tick scheme and we have the right to discounted travel.

I know I am not the only person who has felt discriminated against when I have been asked to produce my ID for my disabled train fare.  Or even asked why I am using the disabled toilets when I am not in a wheelchair. 

There are two answers to this:  I may have a seizure at any given moment and need to use the disabled facilities. I can not drive due to my seizures so YES, I do need a disabled rail pass.

The second thing I have noticed is the lack of understanding of Epilepsy in the workplace.  Questions such as ” are your seizures controlled” or “do you think it will impact your duties” I argue should never be asked at an interview.  This is because it does not matter.  If I am sat in front of you for a job then you can be sure I am fit enough to work  for you.   YES, I may need adjustments, but it makes me no less of a candidate for the job. Nor does it make anyone else with Epilepsy a unsuitable candidate.

So what can you do? ask me how Epilepsy has positively impacted my life and how I can relate it to the job I am applying for.  Ask me if I need to take more breaks than the average person. Ask if I would prefer to type notes rather than write.  ASK the important questions.

The last and most important thing is to never assume a person who is looking a bit unsteady on their feet, vacant, tired or odd to be what I have heard as “drunks” or “crazy people”.  

One of the biggest things people need to be aware of is that Epileptics display all the behaviour of a person under the influence of alcohol.  BUT we are actually having a seizure.

For example:  A few year ago, I was walking across a road and I had an absent seizure (aka petit mal).  I stopped in the middle of the road, vacant and staring.  A car was coming down the road and was a millimetre from running me over.  The only thing that brought me around was the sound of the car horn beeping and the barrage of abuse from the woman in the car.  She called me an idiot and sped off still shouting verbal insults whilst I was left to recover by myself.

If you take anything from this post then please take away this message:

If something looks wrong, it probably is.  If you are unsure of whether a person is disabled, then do not judge. If you are interviewing a disabled person than please be positive about their illness.  If you are looking at a person’s ID do not doubt their medical needs.  Be kind and compassionate in a world full of misunderstanding.

J x

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“It was not my time”; Accepting your past and believing in your future.

Hi everyone,

I thought it would be an appropriate time to write a blog post on the topic of accepting who you are as a person and not letting it define your future.

Starting off as a student nurse has been quite a challenge for myself.  Everyone asks, “why did you not do nursing earlier?”. and everyone gets the same answer “it was not my time”.  And you know what that is okay.  People need to realise that it is okay for it not to be your time.

I went into Law with the same passion as  I did with nursing.  I have done both and so what? Maybe I have lived my life more in my 26 years than one person has done in a lifetime.

We do not have to conform to societies standards.  That is the beauty of this life you are given. You can be anything you want and as many times as you want.  So, whether you decided to be a nurse when you were 18 or 28 you are still as special and unique as the day you started your training.

I think one of the biggest challenges I have faced is rejection.  Rejection from relationships, jobs and friends.  People see any form of long-standing illness or disease as “contagious”.  I like to re-assure people I am not going to contaminate their lives with my Epilepsy but it does not always work out that they will listen to this.

What I am trying to get at is that if you are suffering, if you do not accept that your past has made you the person you are today then you will never accept your future.  I am talking about this in the sense of life and not just your nurse training.  

Why be ashamed of the beautiful path you were given to lead? Why should you hide your flaws? Why not use your problems to help make someone’s future better?

As a student in mental health this has become more apparent the more I train.  My battles are also their battles.  There fight has now become my fight. If they do not have the courage to speak out who else will?

Your life should never be based on a lie.  Be proud of who you are and what has lead you to this point in your life today.

J x

 

 

 

2 months in – life as a student nurse with epilepsy

Hi everyone,

I can not believe it has been two months since I started my nursing degree!  It seems like only five minutes ago I was the scared girl sitting in the back row of the induction week wondering what on earth I had done.

I never knew how fast 8 weeks could go but then when you enjoy something so much I guess time really does fly.   Every time I wonder if I did the right thing of giving up my old life for my new, I just reflect on my day at university and I know deep down I have made the best decision.

However, so many thoughts have crossed my mind since beginning my journey.  Mainly that I am a professional, I am accountable, I will alter someone’s life with my choices.

How crazy is it that you can be the difference between life and death?   I think I went through a variety of emotions.  Excitement to begin with, then fear of the unknown, anxiety about whether I had done the right thing and then back to excitement for the future.  I can never fathom what I may feel next.

Oh, there has been so many highs and lows.  From completing my first 3 modules, to accidentally screwing up my first injection technique practice.

FYI screw the needle on a little tighter before you take air bubbles out of it.  I had a lot of scared nursing colleagues when it went flying into the air. (High five for getting it second time around)

I have already completed my manual handling training, safeguarding and aseptic techniques.  I got 82% on my mock A and P exam and I am only 8 weeks away from my first placement.

So, what have I learnt regarding my epilepsy?

  1. Rest is key – Never burn the candle at both ends.  Uni, study, then lack of sleep equals risk of more seizures or at worst exacerbation of my Non-REM sleep disorder.
  2. 2.  Accept the help you are offered – there are so many things the university can do to help you.  From pens which record your lectures to specialised computer software to help you plan your essay.  Extra time in exams and separate rooms for comfort.
  3. Communication is essential – Feeling tired? tell your tutor.  Struggling with your co-ordination? let your teacher know.  If you do not communicate you learning will suffer
  4. Do not pressure yourself – I would really like to pass this year with a high mark.  Ideally between 65-70%.  I am not sure how this will go because I am still struggling with my chronic fatigue and concentration problems.

Therefore, I think for me the only thing that really matters is whether I am enjoying it or not.

It is far better to try and fail then to never of tried at all.

J x

 

Becoming a Student Nurse – Happy New Year 2018

Hi everyone!

So as most of you are aware after kindly re tweeting my last post in September 2017, I had considered re-training in the New Year.  I had lots of people ask me and message me what I would be re-training in and I kept all of you in suspense until January when I posted that I would be going back to university to qualify as a nurse in mental health.

Personally, I just want to write how much of a life changing journey this is going to be for me.  I fell into Law and enjoyed the last four years teaching it and practicing in it but deep down I always knew I had a higher purpose.  Unfortunately, due to my epilepsy becoming a nurse would not of been the right job choice at the time due to the constant hospital admissions, side-effects of medication and the unstable nature of my condition.

However, I do feel like being a service-user, a patient and a person who has received medical care from every aspect of the National Health Service, it would now be a good time to give back to all who gave to me in my hours of need.

And on that note, I am excited to say it has been my first year seizure free.  So I am not only celebrating that miracle but also that I have finished my first induction week at University (Hurrah).

I am so very excited to have the opportunity to train as a nurse but also to hopefully raise awareness of Epilepsy during my time at University.  Already in my first week I have managed to raise it in group discussions with my cohort and many of them have came up to me and told me that I have given them some food for thought.

It is my hope that I can keep raising awareness whilst training to make other peoples lives better and that one day I might help change someone else life.

So here is a big thank you to all who have continued to support me since Epilepsy and Me was established and I hope you will all continue to follow my journey through the next three years.

J x

 

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

 

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