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

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!)

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My First Childhood Hero

I have planned to periodically write about people who have inspired me.

There are many role models in my life, which include both world-renowned legends and treasured family members. I love discovering new people who inspire me and I look forward to sharing the varying characters with you.

By the way, my list of role models expands continually. I think you can never have too many people to look up to.

The person I am going to write about today was the first person I can truly remember looking up to as a child and aspiring to be like in the future.

I am sure many of you have already guessed who I am about to write about as this day is particularly poignant for them (31/08/2017).

This person is Princess Diana.

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Even though I was only a small child when she passed away, I has always saw her face on the news and in the papers. Although my parents sheltered me from the difficulties that she was dealing with in the early nineties. From my point of view – as a child, I always saw Diana as the princess; of course she would always be in the paper.

After Diana sadly passed away, I soon discovered that there was a little bit more to Diana than I originally knew. I naturally became curious to learn more about her, so my Mum bought me a little Ladybird book about her.I adored that book.

 

I couldn’t believe how many lives she had altered. I learnt about her selfless nature to help others, the fact that she was a devoted mother…and had the best dresses in the world! For me as a little girl she seemed like the perfect hero, who oozed unconditional love. I could not find anything I didn’t like about her.

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Looking back, I think it’s an unusual thing, to be a young child and be inspired by such a strong influential woman, who was committed to helping others and make a good impression on the world. This is something that has stayed with me through to adulthood; Princess Diana is still a powerful influence on my life, as I believe she is for millions of other people.

Twenty years on, people still remember and miss her.

There are very few people in this world that are huge positive influencers, making great changes to the world, breaking down stigmas, and that help and support anyone who needs it.

I am glad that I had Princess Diana was my first role model, I believe she is the best person a child could look up to.

 

 

Thanks for reading,

Becky 🙂

 

Is the Grass Always Greener On The Other Side?

Is the Grass Always Greener On The Other Side?

We have all heard the idiom, ‘the grass is always green on the other side’. I think many of us have experienced pangs of envy when we believe other people are achieving more than us or getting further in life.

But as I am the type of person who enjoys observing and listening to others, I learnt long ago that no one’s life is perfect, and know that there is no such thing as a perfect life. Life will throw obstacles in your way and you have to get around them. But I think that many believe that life should be one easy road and give up at the first hurdle.

There have been increasing occasions where I’ll be at a friend or relatives house. They’ll be a feeling a little low, and will tell me about their worries, whether its financial, career etc. then they will refer to another friend or relative and dreamily mention how they admire some aspect of their lives saying how they’ve got it, ‘all sorted out’.

But little do they know that those people they wistfully mention also possess many problems (because they tell me), and they do the same thing, either by mentioning about others that they think have a perfect life – or they refer back to the original person, admiring a part of their life.

It’s like a big circle!  (I don’t say anything as I’m not going to betray trust), but in these increasingly occurring situations I don’t know whether to find the situation funny or sad.

I imagine lining up the whole group of interconnected family and friends and telling them one by one the amazing things that everyone else admires about them.

I think this is something that we frequently overlook. We see people achieving things that we hope for, but we often ignore amazing accomplishments that we have made ourselves, and don’t believe for one second that someone else would want to be in our shoes.

So, is the grass always greener on the other side? No, it isn’t, it’s purely down to the way you view the world. You can’t look at another person and assume that they are happier as you’re only looking at the part of their life that you want to look at. Their best part, which is nice I guess.

But, if you constantly consider people around you to be more successful and happier, then naturally it will tear away at you. I have known people who have been so focused on what others are achieving that they don’t pay enough attention to their own happiness, and that’s the crux of the matter. It doesn’t matter what you’re achieving or what you possess, it’s whether you are happy.

Don’t think for one moment that you must have your life sorted out. I believe the best thing you can do in life is to be happy, let go of the petty everyday problems, appreciate everything in everyday and love everyone in your life.

Thanks for reading!

Becky 🙂

Epilepsy and The World of Work

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 🙂

Final Update : Are you a Daffodil or a Dandelion?

Final Update : Are you a Daffodil or a Dandelion?

You might remember an old post of mine that mentioned that I was surprised to discover one of my favourite flowers (the hydrangea), had been damaged by the frost. 

I looked at the weeds in the garden (I have many), and they had survived unscathed. It made me realise that people are very much the same. What can effect one person can hardly bother another.

Due to its damage, I didn’t think the hydrangea would have any flowers this year. 

Over the weeks I have been amazed as I have seen the burnt-like leaves disappearing and big blue flowers emerging.

So if things are not going your way, if you’re like the frost-bitten, destroyed flower that I saw only a few weeks ago, they is always a chance that your future will be bright again. Anything is possible. 

Thanks for reading, 

Becky 😊

Have You Felt Supported By Your Neurology Team?

Have You Felt Supported By Your Neurology Team?

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 🙂

 

When Family Plan To Move Away

Yesterday I went to Somerset to visit family.

My family are kind of globe-trotters, they have lived in various places abroad for many years and have been back in the U.K. for nearly a year.

They are currently living in a house which everyone instantly falls in love with. It’s set deep in the country, full of character – being over 300yrs old, has lots of space, loads of ground, has fruit trees in the garden and everything.

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So when I went to visit yesterday, the sun was blazing, the company was amazing, and it just seemed like the most idyllic place to be in the world.

We went for a walk, the dog was happy and excited all day, wanting everyone to throw him a frisbee, and we had a barbecue in the evening.

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My family have plans to move abroad again and want to leave within the next few months, so this trip felt a little bittersweet.

There have been many years that I haven’t seen them, and when they lived abroad it felt surreal to finally visit them.

Yesterday I sat there appreciating the moment and the company before they go, before I don’t see them again for years, and before I never visit their lovely home again. But, I realised how lucky I was to have them back closer to us for the past year, and yesterday meant a great deal to me.

Although I love my family very much and I will miss them, I know that they have to do what makes them happy, and what is best for them. I know that we’ll keep in touch and that I can visit them at their new home and discover a new and exciting place.

Thanks for reading!

Becky 🙂<<<<
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Headaches During Heatwaves

Headaches During Heatwaves

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 🙂

Your Thoughts on Hospitals?

Your Thoughts on Hospitals?

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? 🙂

Thanks for reading,

Becky 🙂