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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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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 🙂

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 🙂

 

London

London

Words cannot describe how upset I felt to learn of the recent attacks in London. People out for an evening, simply enjoying their lives.

No one should ever have to live in fear of an attack.

We cannot forget that this is not an isolated attack and others are constantly happening all over the world.

I have been disappointed to see so many negative comments today on social media. I was shocked, and even considered removing myself from social media as I began to question its purpose. You would think that during a traumatic time such as this, we would unite, but there were people having heated arguments instead of considering the important things – the innocent victims, and the members of the emergency services risking their lives to save them. I saw ‘friends’ on Facebook suddenly spurting out almost hateful posts which makes me wonder how I was ever friends with them in the first place. Although I understand people may have been frightened, anxious and weary I didn’t think it was an excuse to say hurtful things to others, it should be a time to stand together.

During situations like this, I am reminded of the wisdom of Gandhi:

‘You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty.’

And I think that people often lose sight of this. There is more love and good people in the world than bad people. But unfortunately good news doesn’t seem to sell well, so many live their lives in fear.

Yes, there have been more attacks recently and at the moment it’s natural to wonder if they will ever end, or if we will ever be free of them – Gandhi’s advice:

‘When I despair I remember that all through history the ways of truth and love have always won. There have been tyrants, and murders and for a time they seem invincible, but in the end they always fall. Think of it – always.’

We must have faith, and know that the minority will never win, as Gandhi said humanity is an ocean, and our world contains far more good than bad, and in the end good will alway triumph in the end.

 

My thoughts and prayers are with everyone who have been affected by all the recent attacks.

Becky

Yesterday

Hi All,

I just wanted to say thank you so much to everyone who has taken the time so far to read yesterday’s blog. I have been astounded by the amazing response that I’ve had.  I really wasn’t expecting it!

As I had been following Faye on Twitter (since late Feb cause that’s what I started blogging), I had seen her preparing for the marathon. I then read the 26 different stories and it just amplified my interest in her project.

When I realised that hours later I was still thinking about her work, and the other people’s story’s I realised that this might me something I wanted to share!

This past day or so has made me think about the quote from Anne Frank:

 ‘Dead people receive more flowers than living ones because regret is stronger than gratitude.’

This quote is still true today, and it shows that people are not always free in giving compliments and praises to people for their qualities, achievements or simply appreciation of the person, even if they want to. Then they are regretful when the moment has past.

So, if you admire the good that you see in other people, tell them.

If you admire someone for their kindness or good work, speak out.

If you just want to tell someone close to you that you love them and everything they do, say it!

Everyone needs to be appreciated for the wonderful things that they do every day.

Thanks again for reading,

Becky 🙂

Empathy

Empathy

I love the word empathy, the ability to place yourself in someone else’s situation and see things from their perspective.

The world definitely needs more empathy.  How many problems do you think we would be able to avoid both personally and globally if every single person was able to consider others situations and feelings?

Many confuse empathy with sympathy but there is a great difference.

Imagine you saw someone who was homeless. If you saw them and felt sorry for them then that’s sympathy, but to feel empathy you’d consider what it would feel like to be them in their situation; the cold nights, the rain, the loneliness, the fear and suddenly the need to help them and the appreciation for their situation becomes stronger.

I came across this artwork by Valerio Loi and I loved it:

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I thought wouldn’t it be amazing if you could bottle empathy and pass it to someone who needed it? I soon found out that Valerio has created the same for love as well:

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And I thought yes! The world would be perfect if you could bottle love and the best of emotions and pass them onto others. This picture is implying that they are injected, but perhaps spraying them a like fragrance would be nicer? Imagine walking up to someone, say…Donald Trump, and being able to spray love and empathy in his face, that would be great.

(If you want, you can see more of Valerio Loi’s work here)

As we all go through life we meet other people and learn about their life and the journeys that they have been through. The one thing that has surprised me the most is that people who always appear the brightest and warmest are normally the ones with the most surprising lives. People that I’d known for years would divulge details of their lives to me that revealed extreme illness or loss that I never knew about. It only emphasised to me the quote from Robin Williams:

‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’

For me this also highlights the need for general empathy even more. Every person you meet requires consideration and thought. For example, if your boss is giving you a hard time one day and they are normally fine. Instead of thinking about how horrid they are, think that they may be having a rough day. They may be feeling ill. So instead of retaliating stay calm and maybe fetch them a cup of coffee to make them feel better.

This situation happened with me once. My boss rarely worked on site and he was a very nice man. But I had noticed that he was becoming more agitated. Granted, we had a lot of strict deadlines to meet and it was a stressful time. He phoned me the one day and was shouting down the phone at me… over nothing, I realised this was out of character for him. I spoke with my colleagues about it as I was concerned about him. One colleague thought he was just stressed but the other agreed with me that he was acting unusual, and we decided to keep an eye on him. We didn’t get the chance as he ended up having a mild heart attack a few days later. He was fine, don’t worry! But you can understand if I’d  perhaps defended myself, things could have been a lot worse, and I would have never forgiven myself.

When you have epilepsy you find that people rarely have empathy for you and your life. Some people show you sympathy, some show you false sympathy and others display fear.

When you do find someone who can empathise with your situation, it’s easy to notice. This person accepts you, will not ask prying and insensitive questions. They are just there for you and appreciate the situation you are in. I know that I am far from alone in wishing people would have more empathy towards epilepsy, and this isn’t just about epilepsy, this is about any condition, disability or disease. People should be able to tell others about themselves without fear of judgements, stigmas or negative comments.

How many situations do you think would have been altered in your life if other people showed more empathy to you? Or you perhaps showed more empathy to them?

Thanks for reading!

Becky 🙂