Fathers Day, Thank you Dad

Hello, happy father’s day everyone! Today I have decided to talk about my dad.

There is no mistake that everyone in my family was effected when I was first diagnosed with epilepsy, but for my Dad I think it was a little different. I saw a type of fear in his eyes, I was his only daughter and up until that point he had been able to protect me from everything  I had feared, and now I was facing something massive that neither of us could control.

I know my parents didn’t have a clue what was happening when I had my first seizure at 14. As I have mentioned in a previous post, my dad noticed that my lips went blue straight after I fell unconscious, believing that I was choking he put his finger in my mouth a bid to clear my airways. This is when the seizure began. Obviously I bit his finger and he needed stitches. I was horrified when I discovered what happened – probably more than I was about the seizure.  (note: don’t put fingers etc. in people’s mouths when they are have a seizure, you’ll be sorry)

Over the years my dad has been a huge support to me from being; my taxi, my counsellor, my mentor, my mechanic, my handyman,  my friend,  my father. There is no one quite like him. He will do the utmost to support his family. He has always put my health and wellbeing as a high priory, something which can hard to recognise as a teenager, but today with controlled epilepsy I cannot help but look to

IMG_5119
Thought this years card was apt!

my Dad and thank him for everything, as I know I wouldn’t be where I am today without his love and support.

 

Thanks for reading,

Becky 🙂

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Celebrities with Epilepsy

As I have mentioned in previous posts,  a few years ago I was feeling a little isolated  with regards to my epilepsy.

In a bid to see how achievable a full and exciting life can be, I decided to Google celebrities who had been dealt the same hand as myself. I was a little reluctant to do so, afraid of what I may find.  Many people with epilepsy have a certain stigma attached to them, in that they may not be as intelligent as others – which we all know is a myth, or worse, that epilepsy has connections with madness, an even older myth.

I have overheard conversations of people discussing how they believe epilepsy is connected with insanity. It really hurts to listen to it, knowing that they couldn’t be more wrong. This was one of the reasons that I was a little afraid to research this topic. I was expecting a tiny list, where celebrities of the past were too afraid to be open about their diagnosis.

You can only imagine my amazement when I discovered the full list of famous people with epilepsy throughout history. It’s a list that includes names of leaders, inventors, writers, artists and musicians. Many of whom I had admired all my life.

I have compiled a list of their names and here it is, dating from 500BC to the present day:

  • Pythagoras (570BC – 495BC)
  • Socrates (470BC – 399BC)
  • Aristotle (384BC – 322BC)
  • Alexander the Great (356BC – 323BC)
  • Julius Caesar (100BC – 44BC)
  • Alfred the Great (849 – 899)
  • Michelangelo (1475 – 1519)
  • Leonardo Da Vinci (1452 – 1519)
  • Martin Luther (1483-1546)
  • Charles V of Spain (1500 – 1558)
  • Louis XIII of France (1601 – 1643)
  • Sir Isaac  Newton  (1643-1727)
  • George Frederick Handel (1685 – 1759)
  • Peter the Great (1672 – 1725)
  • James Madison (1751 – 1836) 4th U.S. President in 1816 potentially he had epilepsy suffering from attacks which were similar, Madison wrote that he had “a constitutional tendency to sudden attacks somewhat resembling epilepsy which suspended all intellectual function…. They continued throughout my life with prolonged intensity”
  • Paul I Russia (1754 – 1801)
  • Sir Walter Scott (1771 – 1832)
  • Nicolo Paganini (1782 – 1840)
  • Lord Byron (1788 – 1824)
  • Hector Berlioz (1803 – 1869)
  • Edgar Allan Poe (1809 – 1849)
  • Robert Schuman (1810 – 1856)
  • Charles Dickens (1812 – 1870)
  • Fyoder Mikhaylovich Dostoyevsky (1821 – 1881)
  • Lewis Carroll (1832 – 1898)
  • Alfred Nobel (1833 – 1896)
  • Peter Tchaikovsky (1840 – 1893)
  • Vincent Van Gogh (1853-1890)
  • Theodore Roosevelt (1858 – 1919)
  • Agatha Christie (1890 – 1976)
  • Bud Abbott (1895 – 1974)
  • George Gershwin (1898 – 1937)
  • Truman Capote (1924 – 1984)
  • Richard Burton (1925 – 1984)
  • Neil Young (1945-)
  • Danny Glover (1947-) Actor
  • Margaux Hemmingway (1955-1996)
  • Prince (1958-2016)
  • Hugo Weaving (1960-)
  • Susan Boyle (1961-)
  • Lil Wayne (1982-)
  • Dai Greene (1986-)

Next time when you hear someone say something a little in insensitive or you have a day where you feel that nothing is possible, just remember this list of people who achieved amazing things despite their medical issues and ignored what others must have said to them.

Some used their experiences to their advantages and incorporated it into their writing giving us famous and  now beloved works.

I do not doubt that throughout history having epilepsy must have been hugely concerning especially without the medical knowledge and medication that we have today.

This only in-grains my belief that if they could tackle life and still achieve their dreams, so can we.

Thanks for reading,

Becky 🙂

 

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My Journey: 2017

Over the past few days I have heard and read hundred stories relating to other people’s 2017, each one unique to the individual.

For me, my past year has been one of personal growth. Never in one year have I learnt more about myself, and this New Year’s Day is unusual as for the first time I am looking forward to the year ahead rather than dreading it.

This journey of self- growth began on New Year’s 2017. I was recently out of work and gloomily looking toward January. No one likes being unemployed, and other people’s advice didn’t help my situation. They insisted that careers and money were paramount and that’s what I should be perusing. I didn’t completly disagree with them, but they wanted me to walk straight into another career that I was unhappy with. Inside, I knew I wanted to help people, as I was disappointed by my last job, they’d received the news of my epilepsy poorly even when I explained it wasn’t an issue. It had been the first job I’d had since my epilepsy was fully controlled, I never thought it would be and an issue, I could even drive! So, I was disappointed to find that other people’s lack of education was still making me sad. I thought about everyone else who must be experiencing the same every single day – or worse. 

This was my first inspiration to help others. I wanted to do something to help, but I wasn’t sure what.

By the February, I had set up my Blog, ArdentJourneys and became a volunteer with Epilepsy Action, all with the aim to help, inspire and to raise awareness about epilepsy.

From that time, I began to listen to myself and set my own goals that I wanted to achieve rather than society. Without question, during 2017, I have been truly happy and content within myself and that has been a huge accomplishment, and I’ve greatly enjoyed meeting and networking with so many lovely new people.

I have been overwhelmed by the response I have received in 2017 for my humble blog, thank you to every one for your support. Thank you to everyone who has taken the time to read my posts, follow me, and email me, it means so much!

I can’t wait to see what 2018 has in store.

I wish you all a happy and healthy New Year,

Thanks for reading,

Becky 🙂

How Much Does Epilepsy Affect Our Family? Part 1 – My Brother

Families come in all shapes and sizes, and even though they can get on our nerves sometimes, we always love them. We can also never forget that having epilepsy doesn’t just affect us personally, but it also has a profound impact on the people that we are closest to. We can sometimes forget that they can worry just as much or more about our health and welfare than we do.

So I have decided to have a heart-to-heart with different members of my family to see how my epilepsy has affected them. I’ve begun with my younger brother, as I was keen to see how he really felt about the experience of my first seizure to being diagnosed with epilepsy a few months later. I always thought it must have been very difficult for him as he was only ten years old at the time. Yes we’ve reflected on these events, but I have never been brave enough to ask him how he felt.

Here’s our interview:

Can you remember the day that I had my first seizure?

Yes, it was a sunny, summers day, we had not long finished dinner and I was eating desert with Rich (our other brother) in the Livingroom. You had been unwell all day; we thought you might have had a stomach bug. Mum and Dad were in the bathroom looking after you, and I suddenly heard a loud cry from Dad. He was screaming out to Mum that you were biting his finger *. Dad then asked Rich to fetch our neighbour who was a paramedic – he was out, and Mum was phoning for the emergency services.

The paramedics quickly arrived and disappeared into the bathroom to help you, I then finally saw you been taken out on a wheelchair, wearing an oxygen mask and looking disorientated. I was confused and worried, I didn’t know what had actually happened or whether you would be the same again.

I followed you up the drive to where the ambulance was parked, and at this point Grandad had arrived and was now diverting traffic. Dad went into the ambulance with you and mum followed. I was looked after by Grandma and Grandad.

I was relieved when I eventually found out that you would be ok.

 

Did my first seizure come as a surprise to you or had there been warning signs?

No, I was completely surprised, I thought you just had a stomach bug.

 

Can you remember when I diagnosed with epilepsy? How did you feel? What did you think?

No I can’t really remember it, I just accepted it, but I can remember Mum teaching me first aid and how to look after you if you were unwell.

 

What has been the most daunting experience about having a relative with epilepsy?

As a child, it didn’t really upset me, but being an adult, I fully appreciate that it is a serious condition and that worries me sometimes.

 

Has there been an aspect that has been positive?

Having a sister with epilepsy I find that I have good knowledge and empathy about the condition when I learn that others have it.

 

What advice would you give someone who has a relative with epilepsy?

Make life as relaxing and easy as possible for them and help them to avoid their triggers.

 

I am glad that I had this conversation with my brother, as he is the youngest in the family I have often worried that he found my epilepsy the hardest to accept, but on reflection of this interview I think that by being brought up with it, he has embraced and it’s now normal to him.

Naturally there are times that he will worry, I would instantly remove my epilepsy for him to eliminate this, yet I have strong memories of him caring for me when there was no one else around, and although I was panged with guilt, at the same time his caring nature was greatly needed and appreciated. I believe this may have helped shape him be the immensely, compassionate individual that he has become today.

I look forward to sharing the other iterviews!

I hope this has shed some light onto how epilepsy has its impact on so many other people, not just the person who has been diagnosed.

Thanks for reading!

Becky 🙂

 

 

 

*(TIP: DO NOT PUT FINGERS ETC. IN PEOPLES MOUTHS IF THEY ARE HAVING A SEIZURE! My Dad, like my brother didn’t know what was wrong, I fell unconscious with blue lips. My dad in his panic thought I was chocking and decided to try and clear my mouth with his finger as the seizure began… I was mortified when I found out!)

Epilepsy and The World of Work

Today, I thought I would share with you some experiences of epilepsy in the workplace.

Entering the world of work when you have epilepsy can seem like a daunting task, as a teenager I didn’t worry too much about it. I took my first job working in a chemist, while I was studying…safe place to be 🙂

My manager was excellent, and she also taught me that it’s never too late to change a career as she qualified as a pharmacist in her 40s after bringing up her family.

At university and I was glad to find that all my lecturers and friends were also very supportive when they learnt about my epilepsy.

So… I naively thought that my future workplaces would be the same.

Since leaving university I have had a couple of jobs, and I have received mixed responses to epilepsy.

My manager at my first job after uni gave no empathy when I had been unwell and required a day or two off work, he just gave pressure for me to return. When I did, he said, “This better not become a regular occurrence.”  About a year later another colleague was taken on, and when I had the courage to tell him that I had epilepsy I was hugely relieved as he had personal experiences with epilepsy, and wasnt phased by the condition at all. It was good to know that there was someone there if I needed them.

My most recent job shocked me the most. I faced a difficult decision of whether to mention my epilepsy at the interview stage, I decided to remain silent as I was afraid it would ruin my chances of getting the job. But, I got the job!…obviously.

Weeks later, there were talks of me potentially travelling with the company, thoughts of travel insurance and things were bothering me, so I decided to have a chat with my manager and tell him about my epilepsy. He didn’t take it the news well. Although he didn’t say anything bad, he went red, his eyes darted rapidly back and forth for the remainder of the conversation, no matter how many times I told him, ‘it’s mild’, ’It’s controlled’ etc. Things were never the same after that, he didn’t chat to me the same, I think he had become afraid of me in some way, and where we’re originally getting along so well, things had become tense and awkward.

What’s more, I discovered that nearly all my colleagues in the company had very old-fashioned views when it came to epilepsy, I heard them gossiping and laughing about another co-worker, thinking that all seizures are triggered by flashing lights or worse, that it had connections with insanity.  It was this moment that I realised that I could never be open and honest with my colleagues about my epilepsy as they were just not educated enough about the subject, and I was afraid of their judgements.

This company was the biggest that I had worked for, but its employees were the most unprofessional and closed-minded that I had ever seen and it shocked me. The experience at that company has been  the inspiration to this blog as I think it’s important to support people with epilepsy when they’re having a rough time and its vital reach as many people who don’t know about enough about epilepsy to stop stigmas.

 

My advice for work is to find something that makes you truly happy.

Doing a job you love, with colleagues you are also supportive of you.

 

You can find more tips and advice about epilepsy and the workplace at Epilepsy Society

Thanks for reading,

Becky 🙂

Have You Felt Supported By Your Neurology Team?

Today I am asking the importing question, have you felt supported by your neurology team? #epilepsy

Today I am asking an importing question, have you felt supported by your neurology team? From your diagnosis, through to the altering medications, the life changing moments, and even the highs and the lows that epilepsy brings.

As epilepsy is a life long condition, your neurologist becomes an important part of your life.

You would expect your neurology team to provide you with all the help and support you require regarding epilepsy, however not everyone receives it and I have been one of those people. Today I have decided to share my experiences with you.

This has taken a lot of consideration,  as I wanted to remain as positive as possible about epilepsy, but I realised that if I am open about my experiences I could potentially help other people, and this is what this blog is all about.

 

My Experience of Neurology Teams

Thankfully, I have great memories of my first neurologist. She provided me with all the advice and guidance I could need, in one situation, she even brought in one of the top UK paediatric neurologists to see me. I couldn’t fault the care.

I had a neurologist who asked if I was learning to drive when I was 17, this was his reply when I told him I was learning;

You shouldn’t be learning to drive, your epilepsy isn’t controlled! I demand that you hand your provisional licence into the DVLA at once!… (few minutes gap as no one was talking) I won’t be upset if I were you, I have to tell taxi drivers and bus drivers that they can no longer drive every day, and driving is their living, this is nothing to you!”

So as you can imagine I left that appointment upset. The moment I turned 16 healthcare professionals became obsessed with topics such as pregnancy while never discussing the subject of driving. (I wouldn’t have had lessons otherwise). But a decade later I have no children and I can legally drive 🙂

I will confess that I wasn’t exactly the perfect patient either, up to this point not one medication had worked for me. It’s frustrating when medications begin to alter your mood, increase your weight and damage other aspects of your health for little or no gain. So I decided to see how different my life would be like medication free.

I soon had a new consultant who was overly anxious when she discovered that I was medication free. I consider myself to have very mild epilepsy with perhaps one seizure a year, and although I appreciate that I was at risk without medication when I wasn’t taking medication I felt the same, perhaps better, because I had freedom from side-effects and saw no increase in seizures.

My neurologist would frequently discuss the seriousness of my condition even mentioning that I could die if I wasnt on medication.

I can remembering thinking that if someone has cancer and decides to decline treatment, the doctor respects their decision. But this situation felt pressured…

I was about 18, I was home alone, still medication free, and my support nurse called me. It was obvious that the intention of her call was to get me on medication again. I explained to her that I was doing well and was concentrating on a healthy lifestyle. She told me to stay away from ‘stupid’ ideas (which she apologised for) and later went on to explain to me that she has had ‘patients who have died from this’. I urged to her that my epilepsy is thankfully minor and always produces plenty of notice and auras. Her reply, ‘what if it doesn’t?’  Eventually, I pitifully agreed to begin medication again, hung up the phone and cried. I felt like a push over.

After two years of trying various medications, I found on that thankfully worked.

After my consultant were pleased that my medication was working, I received a letter signing me off from their care.

 

Why did I share this story?

I know I don’t have the most positive experience with some of my neurologists or support nurses, and I have not written this article to slam neurology departments. I fully appreciate that the hospital had to be realistic and had to provide the information related to my condition, and I am grateful for the work they do, but I sometimes wonder how different the outcome would have been if they had been slightly more tactful and resourceful.  There were times where I would leave appointments upset, reaching the car and beginning to sob, but thankfully my mum was there to give me the best encouragement, support…and hugs 🙂

If you have a child, relative or friend who is experiencing similar I think it’s important to place as many positive thoughts in their mind, telling them that you are always there to talk, and reminding them of all the amazing things that they can achieve.

 

How Supported Have You Felt By Your Neurology Team?

You might think that the neurology team are not supposed to be there to support you, just to give you medical and professional advice.

I however think that having a diagnosis of epilepsy is a life changing and lifelong one which requires support and positivity where possible.

I would be interested to know different people’s experiences and views of their neurology team and how supported they have felt.

Thanks for reading,

Becky 🙂

 

Headaches During Heatwaves

Anyone who lives in the UK will be able to tell you we are currently experiencing a bit of a #heatwave.

Anyone who lives in the UK will be able to tell you we are currently experiencing a bit of a heatwave.

I have never been the kind of person who copes well in the heat. I have very fair skin, I have never had a tan, and I burn instantly even in mild weather. So I’m the kind of person who avoids sun and loathes heatwaves – I know I’m in a minority on my sun opinions.

Yesterday I woke up to a boiling hot bedroom and a terrible migraine which I suffered from for the rest of the day.  For hours nothing seemed to relieve the horrible ache, it was awful. The ironic thing is, is that my epilepsy medication is Topamax which is also used as treatment for people with migraines…it didn’t help me yesterday!

The two unfortunate things about yesterday were that:

  1. It was Father’s day and I ended up making my dad worried about my health.
  2. I was asked to look after my baby nephew who also wasn’t enjoying the heat, and then decided to cry for ages – which just made my headache worse! 😥

It eventually passed after I drank plently of water and slept most of the day away.  Thankfully I’m back to my normal self today.

although I was pretty miserable yesterday as everyone else was out enjoying the sunshine and having barbecue’s and stuff, I’m glad to say that I didn’t have any aura’s, so I am extremely grateful for that.

Today I’ve stayed in the shade and respected the 30 degree heat.

Hope you’re all enjoying the warmer weather.

Thanks for reading,

Becky 🙂