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!
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!
*(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!)
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
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.
Anyone with epilepsy will have their fair share of stories and experiences of hospitals. We’ve been rushed in by ambulances, woke up in Resus, had all kinds of scans and blood test etc. and although we’ve received excellent care from dedicated people, the whole experience can leave us feeling nervous about hospitals. I guess it’s just association e.g. ‘last time I was here I was ill.’
Due to these different experiences, people will have their own varying thoughts and feelings about hospitals, its only natural.
Normally I am fine with visiting hospitals but I was surprised when I recently found myself feeling a little anxious at my old hospital:
The other day I had to take my brother to the hospital for an appointment.
When we entered the building that ‘hospital type’ smell instantly hit me. I felt uncomfortable, and a little anxious, and quickly realised it was attached to old memories of frequent visits to the A&E and outpatients from my early teens.
Being diagnosed with epilepsy at 14 classed me as a child, so I was under the care of paediatric consultants.
As you’ve probably guessed, being classed as a child at that hospital meant that I stayed on children’s wards, and had to go to the children’s outpatients departments as there was no department for adolescents = embarrassing situation for a teenager.
When I was 17 I was classed as an adult and transferred to a different hospital.
We walked past the children’s outpatients department and I briefly stopped and looked at it. It was closed for the day, and it looked dark and sad. It was so much smaller than I remembered – I didn’t think I had grown that much since I was 14.
For me, my height was the biggest embarrassment of all. Today I am 5’10 tall and I wasn’t much shorter as a teenager.
So picture me, sat there in that waiting room among all the little children.
I would then frequently have people staring at me or have women engaging in ‘mum chat’ with me and enquiring where my child was.
The other problem was that the nurses had to record my height and they could never reach high enough.
Its one of those things that’s funny to look back on now, but at the time I was really quite sensitive about.
I was surprised by how visiting a place for just a moment could evoke so many memories.
Even though I remembered going to the hospital I didn’t think that it had been that emotional for me.
But to stand back in the same foyer and smell the same hospital smell transported me back, and I remembered just how nervous, embarrassed and uncomfortable I had felt during my visits to hospital as a teenager, and it all happened in an instant.
So whats your thoughts and feelings on visiting hospitals?
Do you find that they have a certain amount of anxiety attached to them?
Or do think when your there that you’re in the best place if you become unwell? 🙂
Many of us have medical complaints or take medications, but how often do we think about the bigger picture?
Did you know that there is a charity that is fully committed to improving how the industry is currently run?
A few of years ago a family friend of ours became a vet and got a job at a famous veterinary practice called Fitzpatrick’s Referrals. If you havent heard of Fitzpatrick’s they have their own TV show called The Supervet, which shows pioneering surgery and treatment for animals.
Before my friend worked there I had honestly never heard of the place, and initially I was tuning in to see if he was on TV – he wasn’t. I think I saw him twice. But it didn’t matter, because I have now became addicted to the programme.
The practice boasts a brilliant and dedicated team and it is clear that for all staff, their job is their passion.
Yes there can be sad moments, but you always know that they give their best and do everything that is humanly possible in order to improve an animal’s quality of life.
The show follows the practice’s owner Professor Noel Fitzpatrick, Noel is like one of those rare teachers you might have had in school with contagious enthusiasm for their subject. He has so much passion about his profession; it makes everyone else just as equally absorbed and you soon realise you have been learning loads while watching the show, to the point where you find yourself talking to friends about stuff like orthopaedics over a cup of coffee!
After discovering about Fitzpatrick’s, and adoring the whole ethos of from ther work to the love and hope that they provide to every patient and family that reaches them, I soon found that there was also a charity, founded by Noel Fitzpatrick. You would expect a charity that’s created by a pioneering veterinarian to be focussed on animal health but it’s not. It’s called The Humanimal Trust, and it focuses on humans and animals equally through the concept of one medicine:
The theory is quite simple:
Human + Animal = Humanimal
One medicine is the idea that humans and animals will be treated equally in the field of medicine.
There are basically 3 main parts to the ethos of The Humanimal Trust and their concept of one medicine:
Clinical communication between vets and doctors.
‘Everyday there are advancements and research breakthroughs in both veterinary and human medicine, yet at present neither profession collaborates to share their information that would progress treatments and procedures using regenerative medicine for the benefit of humans and animals simultaneously.’
A couple of weeks ago, I listened to a BBC Radio 4 interview that Noel had taken part in, it discussed the topic of: ‘Should Doctors and Vets Work More Closely Together?’, an audience member mentioned that while working in Australia as a doctor, he and his colleagues learnt that vets had solved a rare medical issue that had been baffling them, the solution was discovered to be a simply a lack of copper absorption. The veterinary community already knew about it and had been treating sheep for it. communication meant that the problem was easily solved.
When I first heard that The Humanimal Trust wants to improve communication, I thought about how beneficial it could be in sourcing medical solutions and treatment for so many people.
As many of you know by now I have epilepsy, and I can remember thinking that if there was a vet somewhere in the world, who had perhaps made immense progress towards epilepsy which could be of benefit to humans, I would like to know about it, and I think many other people would feel the same.
Medication for humans and animals that is ethical
Ethics in medicine is an important topic, and The Humanimal Trust is addressing this.
Currently, if we have any medication or implants they have been tested on animals in order for them to reach us, meaning a perfectly healthy animal has sacrificed its life for our medicine.
In 2015 approximately 4,300 dogs in the UK sacrificed their lives for human medicine, in the USA, that number was nearer 50,000  . These are shocking statistics, and since I have been a child I have always been concerned about animal welfare. I have never been content with the fact that animals have been used to test drugs, and that our only consolation is that it’s safer than endangering human life. But, there could be a possible solution. The Humanimal Trust proposes that with the diseases and conditions are practically identical in humans and animals, medications and implants could be trialled on animals that are actually unwell, and then co-operate with pharmaceutical companies, which would then produce more ethical medications.  This would be benefiting both humans and animals.
Human medicines are huge business, so there is a risk that pharmaceutical companies may see more profit in the way they currently run business. I once sat next to my GP as we went through a list of generic and branded medications that I could have. I saw exactly how much they were costing the NHS to purchase, and the prices were eye-watering.
A vital part of The Humanimal Trust is that they also conduct their own clinical studies; The Trust is potentially the only charity of its kind in the world that is funding clinical research in animals and humans at the same time.
It’s understandable that we all want cures and treatments for our illnesses, but there other problems that can also arise without warning, for example MRSA and Ebola. These bugs are the same in humans and animals, so what’s the best plan for when a superbug strikes? Especially as it’s no news that healthcare professionals can sometimes overprescribe antibiotics:
‘You don’t care about MRSA until it’s in your child and yet The Humanimal Trust is funding a project to look at bacterial resistance with over prescription of antibiotics, it’s the same bug. We have DNA mapped, every bug that comes into my practice it’s the same bug that you or your child would have. Why are we not doing a study in parallel? If doctors are going to be over prescribing antibiotics and vets are going to be over prescribing antibiotics,…we are in a mess.’ (Noel Fizpatrick)
So that’s the Humanimal Trust!
Im grateful for learning about Fitzpatrick Referrals through The Supervet, I believe that they are more than just a referral practice. They show unconditional love and hope to everyone regardless of whether they are animal or human.
I have been equally appreciative to discover the amazing charity of The Humanimal Trust as the charity also provides that same love and hope with the pledge to benefit both humans and animals.
I truly believe that The Humanimal trust has the potential to change the world of medicine, and benefit so many lives (both human and animal!)
Before I knew about The Humanimal Trust I always believed that our health care system was pretty good, and I couldn’t think of much that needed improvement. I’ve now realised that things could be improved and great things could be gained.
I believe that music is an important part of everyone’s life.
I sometimes wonder how many of us really acknowledge how important music is to us.
When you think about it, everyone likes some form of music. It doesn’t matter who you are or what mood you’re in, there is always a song for you.
Whoever you meet there is always a genre of music that they adore and I always love finding out what type of music they enjoy listening to.
Whatever music you like I am confident there have been times where you have heard your favourite song and turned it up, and found yourself feeling instantly happier, or stumbled across an old song and been hit with a rush of nostalgia.
I love all the varying feelings that music can instigate.
Do many of us really appreciate the amazing ability that music has?
Music is a part of our daily life and I wonder how many people realise its power and importance? One song can have the ability to reach millions of people and music can change and lift people’s spirits and alter their lives. I have witnessed older members of the community overcome loneliness purely through music groups, and I have seen people of all ages and backgrounds come together due to having the same enthusiasm over a band. Music can benefit and unite so many people.
It’s such a wonderful feeling when you hear a song with perhaps an incredible melody, moving harmonies, or lyrics that seem to personally speak to you.
Many of us will have a favourite song that we will never tire of, that either connects to us emotionally or lifts our spirits. Mine is, Don’t Stop Me Now by Queen. Its one of those songs that makes me happier, I’ve listened to it countless times and I still love it. A few years ago I was shopping, and they were playing that very song, I was miming away to the song and looked up to see everyone else, all age ranges doing exactly the same. (I knew that song was good.) I have never witnessed anything like this before or since. I guess it goes to show that songs don’t have to be brand new to connect audiences, it doesn’t matter when they were written, some will have the ability to connect with a wide range of people.
How has music helped me?
I am constantly drawn to music and when I need a bit of escapism, music is the perfect solution. I am confident that many other people will be the same. I am the type of person who will listen to every genre of music and finds it hard to choose a favourite style or artist, I like nearly everything.
I think with having epilepsy, I will do anything that can help keep stress and anxiety reduced, and for me music is ideal.
When I was a teenager, I also studied music. Being recently diagnosed with epilepsy, this was something good to focus on and I ended up learning to play four instruments. This sounds impressive but they are all woodwind instruments which are very similar to each other, they are; clarinet, saxophone, flute and oboe.
I would always recommend someone to learn music as I have enjoyed it so much. Perhaps if you have a child with epilepsy and want them to have a hobby, I would suggest music lessons as not only does it help develop abilities in maths and social skills, but it also builds on confidence skills in a non-strenuous or competitive way. I enjoyed music so much that it is still a great part of my life today.
Would you consider music to be an important part of your life?