The TryGuys: I’m Getting Worse (autoimmune update); We Can Relate

I was inspired by this heartfelt TryGuys video and was surprised by how much I could relate to it.

I recently came across this YouTube video by The TryGuys;

(contains some swearing – just in case you’re watching with kids)

If you’re a fan of The TryGuys you will know this video is a little different from their typical style, yet its a very sincere vlog from Zach who is updating us on his auto – immune disease, ankylosing spondylitis.

You make be thinking, ‘ an auto – immune disease and epilepsy are very different things’ but as Zach gives his brave and heart-felt talk about embracing his invisible illness, I believe we will all be able to relate and empathise with his situation, and from a personal level, it appears that we had both dealt with our diagnosis’s in exactly the same way.

Zach explains how initially he always did the right things for his condition, he was feeling better. However, life took over and he admitted he got a little lazy and the perfect health didn’t last.

“…as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face I was…not accepting my own reality…The truth is I started ignoring my disease the second I could. The moment my medicine started working I stopped paying attention to it, I stopped researching it, I didn’t want to know more about my AS because the more I learn the more I would have to accept it that this is now a part of me.”

Those words resonated with me because I had reacted in the same to my epilepsy.

Although I understand how complex epilepsy can be, I began to wonder how many have been in a similar situation?

Experiencing good health resulting in a laid-back attitude to your wellbeing, believing your fine, only to be bitterly upset when you become unwell again? I know I have.

And how many have had trouble accepting your diagnosis, knowing that epilepsy is now a part of your life forever? I know it can take years.

I can remember those early hospital appointments, the new meds,  I was doing all the right things and to the outside world I appeared to openly accept it.

My seizures can be affected by stress and fatigue and I ignored the warnings – for weeks. The late nights happened, I over worked myself and I would wake up in hospital, and it would happen over and over while I continued to ignore the warnings, missing medication, striving to have a ‘normal’ life but I couldn’t, I had epilepsy.

I was also afraid to even talk about epilepsy at one point, that’s how much I didn’t want to accept that it was a part of me.

Obviously we know this changed and I am incredibly glad it did.

I won’t spoil any more of Zach’s video because I think it’s really worth a watch, I hope you enjoy it as much as I did and find comfort in the fact that you’re not alone, there are people everywhere who understand your situation and what you’re going through even if their lives are slightly different, and the most important thing is that there are so many people around who are keen to help you if you are struggling or feeling lost.

I felt lost for too long after my diagnosis, and bottling things up never helps.

Don’t forget, you’re always welcome to send me a message!

Becky 🙂

(The other TryGuy video’s are great too!)

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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!)

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?

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?

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 🙂

 

London

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

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 🙂