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My Battle with Epilepsy, Searching For a Cause

My Battle with Epilepsy, Searching For a Cause

Many of us after we are diagnosed with epilepsy search of a reason as to how it’s entered our life. Here’s my story:

After being diagnosed with epilepsy it wasn’t long until I (and my family) began looking over my past trying to get a possible idea as to why this thing might have appeared so abruptly in my life.

I couldn’t understand how I had been perfectly healthy for so many years and then, one day, I had epilepsy. I felt that there had to be a reason.

I thought that even though I had been given the common ‘unknown cause’ to my diagnosis, at the time I thought that if I could pinpoint where it may have come from, I could work out how to get rid of it.

There was one notion in particular that played on my mind for quite a while and which I thought had caused my epilepsy. When you initially consider a theory like this your are filled with guilt for potentially giving yourself a lifelong condition.

When I was a child I was a tomboy and I loved climbing trees etc. and basically I was accident prone.

I cut my eyebrow open when I was 5, after I ran into a swinging-swing in the park.

I also split the top of my forehead open when I was 8 after sitting on top of some railings and swinging down and hitting my head on the bottom one.

So now I’m left with two scars on my forehead which I usually hide with a fringe.

I went to hospital after both these accidents, but it was only as a teenager that I realised, that the swing incident had briefly knocked me out. One moment I was seeing a swing fly towards me, and the next my friends mum was carrying me home.

Naturally I battled with the idea that this and the other knock to my head may have caused my epilepsy for a long time believing that it had definitely caused my epilepsy. But other relatives were also coming up with their own suggestions, from TB jabs to what I had eaten an hour before being admitted to hospital. I obviously dismissed these, and I know my family were coming from a good place but as you can imagine, sometimes this irritated me or even embarrassed me.

I have a particular memory of being in hospital and a doctor chatting to me and looking at my notes; he looked confused as he said to me:

‘It says on here you, ate some…cheese?’ I then had to explain to him that it must have been my dad’s crazy suggestion as he’s allergic to penicillin. He replied with, ‘I see’ and frantically scribbled it out.

For a very long time I truly believed that I had brought my epilepsy on myself even though the doctors could find no cause, and every test and brain scan has comeback clear – thankfully.

6/10 people living with epilepsy will never know what causes it for them, and I believe that is human to try to find a reason or cause when something alters in our health or life.

After I accepted my epilepsy I also accepted the fact that my epilepsy has no cause. When I consider the evidence, a 9 year delay for epilepsy from concussion is a bit unheard of. I think if my epilepsy was caused by my minor head injuries it would have entered my life much sooner.

The most important thing I’ve accepted is that even if I knew my epilepsy was caused by a particular thing from my past it doesn’t matter as it’s now in the past, the most important thing is the present and future, making sure that I don’t worry about things that I cannot change, and looking after my health.

Thanks for reading,

Becky 🙂

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Medication and Body Image

Medication and Body Image

If you have epilepsy you will be on medication, and we all know that medications come with side effects.

I have tried quite a few different medications over the years to try to help control my epilepsy, and many of them had side effects such as nausea, headaches, mood changes. Etc. but not many people tell you that they can also cause you to gain weight.

When I began taking anti-epileptic drugs I was 14yrs old. I was tall and slight in my build. The moment I began taking the medication, my weight increased and my face plumped out, and when your 14yrs old this is the last thing that you want to happen to you.  I couldn’t do anything to slim down and it wasn’t for what I was eating. I found myself skipping meals to try to help lose weight, which obviously didn’t work. As a teenager I didn’t realised to danger I was potentially putting myself at, as skipping meals could have triggered seizures.

Even though medications altered for a few years, my weight either stayed the same or it increased. I never returned to my original size I was before.

I used to hate being around my friends sometimes, especially during summer or if we went swimming, as they seemed so perfect and slim. I realised how self-conscious I was becoming.

When I was 20 I was offered to change medications. This one did have a warning of weight loss. Thankfully it has worked for my epilepsy, and it certainly worked for the weight loss as well.

Within 3 months of using the medication I had dropped from a (UK) dress size 16 to a size 6 (btw I’m 5’10 tall).

Before I took this medication, I assumed everyone would be praising me for looking better like you always see with other people who have lost weight. But they didn’t. Everyone thought I was ill. Some people approached me and bluntly asked me if I was unwell.

My family were beside themselves and my Dad was constantly trying to give me fried foods.

I thought that I would be viewed differently be people. I thought men would find me more attractive and that I would be more socially accepted by friends and other people. It’s not the case at all. Apart from the people who thought I was dying, every other social encounter remained the same, and I never had a new meeting with anyone which was different from before. People accepted me the same, because I was the same person.

I think we have been far too conditioned by media to believe that looking a certain way is attractive. With attraction, the same amount of men noticed me, whether I was slim or not. When I actually consider the men I like. It’s not the type; it’s the personality that’s the most important. If I think about my perfect guy, I don’t instantly think about a man in a magazine, and that was something I didn’t appreciate when I was 20. I guess I thought that all men wanted women who looked a certain way. But it’s not true.

If you were in the consultant’s room with me when I decided to choose my current medication then, yes, you would know that the weight loss played a part in my decision-making. Since taking this medication it has been a tough road, where I have had terrible nausea, been unable to eat and worried many people, but I am pleased to say those side effects have passed and that my weight has now plateaued to a healthy size 10.

This is just one area of which medication can have an effect on your life and I would like to explore others in the future. But as I grew up with epilepsy as teenager to a young adult I consider body image to be high on the agenda for many people.

My body image had certainly affected me, but on reflection, the people in my life have always supported me and only had my best interests at heart, what I look like has never mattered to them, and that’s true for everyone we care about. We just love them and want them to be OK.

Thanks for reading!

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 🙂

Faye Waddams Decicates Her Miles in Marathon

Faye Waddams Decicates Her Miles in Marathon

As many of you know, over the weekend we had the London Marathon.

 

I have always had admiration for anyone who has taken part in a long distance run such as a marathon as I just couldn’t run for long distances to save my life. And when I was diagnosed with epilepsy I had a new outlook on exercise and long distance running. Now my exercise is light, and I make sure I don’t overexert myself. So when I witness other people who have epilepsy partake in marathons I think it’s absolutely astounding.

I came across blogger Faye Waddams through Twitter, who not only has epilepsy herself, but ran the London marathon and dedicated each mile to someone who had been effected by epilepsy.

I thought that this was such a selfless and kind gesture.  So I wanted to write a blog today to her as I think that she is amazing.

Before the marathon she sent out messages through social media so people could have a mile dedicated to them or a loved one. This is when I realised how good her project was, as it was engaging other people and also spreading awareness of epilepsy.

Not only did she go on to complete the marathon perfectly, but she also released her latest blog thanking her supporters and including the 26 stories of each person for each mile she’d ran.

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You can read it here.

She warned that you needed tissues, and she was right! Although I try to keep my blogs as positive as possible to show people that we can get through it, the collection of people’s stories reminds you of just how varied epilepsy can be, and also how life altering and devastating epilepsy can be.

Although each story is brief, some will stay in my mind for a long time.

I think it’s so clever that Faye dedicated each mile for someone. For example I once donated my hair to charity. It was just sent away with the money I raised. I don’t know who it went to or who it helped. Having 26 stories to accompany your mission makes it so much more real and highlights all the people that are affected and who you will be helping.

I’ve also learnt that she has been nominated for the Positive Role Model Award for disability 2017 which is another incredible achievement, so well done Faye!

If you want to visit her donation page then its here!

Thanks for reading

Becky  🙂

Life Saving Pets

As promised in my last blog, pets can have an amazing impact on our lives as they constantly provide us with love and comfort.

But when people are seriously unwell, there are some dogs that can literally save their owners lives. These dogs come in the form of medical alert dogs.

Medical alert dogs can help with a wide range of medical conditions from seizures, heart conditions, diabetes and even allergies.

How do medical alert dogs actually help people?

With regards to heart conditions, diabetes and allergies, medical alert dogs are acutely aware of the minute odour changes in humans that can be due to blood sugar levels or hormone related changes. This will allow the dog to alert its owner of an imminent medical problem and can help fetch medical supplies.

Medical alert dogs are also available for people with severe allergies and they detect the minute air-borne allergens rather than sensing changes from the person.

What about medical alert dogs for Epilepsy?

You can also have medical alert dogs for seizures and epilepsy. As with the above mentioned conditions, you normally have a medical alert dog if your epilepsy has been difficult to manage with medication.

There has been some debate that dogs cannot detect a seizure before it happens in the regards that they cannot smell changes in a person before it happens. This is a topic which is still being debated and studied. If you have the type of seizures that develop from simple partial to generalised, or you maybe have a lot of auras, dogs will pick up on this and should be able to alert for help or get you to safety.

What we do know for sure about medical alert dogs in epilepsy is that during seizures, they can call for help and attention, fetch medical supplies if necessary, and if you have an implanted medical device (VNS) for seizures  they can activate it for you, which is all pretty impressive.

Pets as Therapy in Hospitals

A few months ago, I was looking for some voluntary work to do, and came across Pets as Therapy. I think it is a brilliant concept where you take your pets into hospitals and just have a chat with people and brighten their day. I would have loved to have been a part of it, but my cat can’t handle travelling 1 mile to the vets let alone miles around in my car visiting people in hospital!

Can you imagine being in hospital, whether you were in the ward or in A+E and someone was walking around with a cute dog or cat and asked if I wanted a chat? It would have certainly brightened my day.

Over recent years I have come across countless stories where owners have been in hospital and have been missing their pets, and when the hospital has allowed their pets to visit them they have made an amazing recovery.

For example, I saw this story which went viral last month, again it proves the healing power of pets. It’s about a 95-year-old lady with Alzheimer’s and her family introduced her to a dachshund dog who now visits her fortnightly. When she spends time with the dog she becomes a different, more carefree person. (You can read the story here)

I think more and more people are realising the amazing potential that our pets and dogs have. We don’t only have rescue dogs and police dogs that keep can help keep us safe and rescue people, but we have medical dogs that save people’s lives every single day. Scientists are even looking into dogs that can detect early cancer cells purely through their astonishing sense of smell.

Even if our pets are not saving our lives medically they might be saving our lives simply by just by being in our lives. It’s proven that they have an incredible ability to heal us when we are feeling low and I am glad that hospitals are noticing the benefits and bonding qualities animals can bring. Many times I have been in hospital even to visit someone else and saw another patient with no visitors, and I am confident that schemes such as Pets as Therapy will help give people in these types of situations a better experience in hospital and make them feel less anxious and lonely.

I would love to know you thoughts on this subject.

Perhaps you have a medical alter dog or have had your life saved by your pet?

Let us know in the comments below!

Thanks for reading!

Becky

 

Information for this article was sourced from:

medicaldetectiondogs.org

epilepsy.com

epilepsy.com

petsastherapy.org

buzzfeed.com

Pets and Their Impact

Pets and Their Impact

I think that nearly all of us have had a pet at some point of our lives. Do you think that having pets alters us or changes us in any way?

For children I believe that having a pet teaches them a great amount about caring and looking after another living creature. As I am getting older I am developing a greater appreciation of the love, companionship and great memories that animals give us everyday.

While growing up, I had many different pets. Fish, rabbits, hamsters etc. But I always wanted a cat. I don’t know why I just did. I loved visiting family members who had cats and I just wanted one of my own. But I never got one 😦 . I can remember one birthday I very kindly asked for a kitten, and in the morning I ran downstairs full of excitement, hoping that I’d finally have my cat, and in the middle of the livingroom floor among all my other presents was…a cuddly toy one.

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The Birthday Present 😦

But, years later… Guess what, a miracle happened and I finally got a cat. I now fully understand the phrase that, ‘good things come to those who wait’ as he really is the perfect cat for me.

I can remember the day we bought him. I had been through every newspaper etc. looking for kittens. This was in January, and by all account this isn’t the right time for kittens. Finally in February I saw the first ad for kittens and raced there. We went to this house which was teaming with little cats. I was shown our kitten and I was told he liked cuddles, which meant he was sold!

He’s never left my side since, he’s even sleeping by my feet while I’m typing these words.

What impact has my pet made on my life?

If you have a pet you have another family member. When you consciously sit and think about all the memories you share with them, how often they make everyone smile and how much you love them. You realise how important they are and how irreplaceable they are.

When I think about my cat, he is certainly part of our family and I think about the years of happy memories and love he has brought us. He certainly changed our lives from that first moment we brought him home and he got stuck under the kitchen units.

When I catch the bus outside my house, my cat waits for the bus with me. He also hears the sound of my car when I arrive home, appearing from nowhere and crying at me from behind the garden wall.

He’s also the only cat I’ve seen ‘crossing the road’ in the sense that he looks both ways and then runs like mad across the street only when its clear. I didn’t teach him this, but if anyone asks. I did.

Am I a different person because of my pet?

Even though I have naturally learnt more about pets since having a cat, I feel a little bit more of a caring, cuddly person that I did before I had my cat. But I think that’s just who I am, and I would like to think that I would be the same person even if I didn’t have my cat. But I have noticed that since I have had him, I am definitely more connected with the neighbours. My cat is not just loved my me, he is also adored by many grannies who also live on my street. If he’s not around  I know he’s being spoiled by someone, and I am always bumping into neighbours who tell me about the funny things he gets up to. My own Grandma is one of them, (by the way she never wanted me to have a cat), and now I frequently find him over her house, curled up on his very own chair.  When you consider that many women on my street are elderly widows who could potentially be suffering from loneliness, just having the cat to visit them and then seeing me afterwards will brighten their days.

I love the fact that one cat can bring so much love, joy and companionship to so many people.

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My Cat, keeping cool

 

Has my pet had an impact on my health?

From the perspective of my health, I would say that having a cat has greatly helped with my health. I am confident that my seizures can be triggered by stress, I’m not suggesting that cats are seizure cures but simply petting them can relax you and help lower blood pressure. ( by the way not all cats are chilled out or like being petted!). As I mentioned earlier my cat loves relaxing and having hugs from everyone, and after a busy, stressful day it’s really nice to come home to. This is obvious, but cats would make rubbish as seizure alerts. Once I was being taken to hospital and my cat was just sleeping in his basket! 🙂

So after many years of waiting I finally had my cat. I have been amazed by how he can cheer so many people up without doing hardly anything. He follows me everywhere even down the street. I have felt more love and compassion from my cat than I have from many people I have known.

I was hesitant to write this blog as I was afraid of appearing as a crazy cat lady, but I wanted to highlight that animals can have a profound impact on our lives and who we are.

Some pets save people’s lives, and I hope to discuss this topic in more detail in my next blog when I discuss medical alert dogs and pets in therapy.

What impact have your pets made on your life? Feel free to comment below!

 

Thanks for reading!

Becky 🙂

Want to get in touch? Feel free to send a message!

Greater Gratitude, Better Outlook

Greater Gratitude, Better Outlook

When you think of gratitude, what do you think of?

Do you think about the nice thing that someone has for you recently, or is it something a little bigger than that?

What are you grateful for in your life?

At times of difficulty or illnesses many of us (myself included) have felt that there has been hardly anything in this world to feel grateful about, and when you consult other people on what they are grateful for, they will say that we’re grateful for our technology or material objects.

When our lives become busy, as they do, or if we enter a time of perhaps hardship, we sometimes forget to notice the good things that are constantly happening all around us. When we notice these things and appreciate them, we feel happier, and when we’re happy our lives become richer.

I know this sounds very simple, but just from noticing and appreciating the simple pleasures in life could increase your happiness and reduce your stress.

People come across this frequently throughout their lives and at different moments of their lives. They appreciate the balance of life, and they start to notice the amazing world that is around them. They don’t have to be anywhere special, but they value their life, their opportunities, their dreams, the amazing way that the world around them just…exists. I don’t think enough people take the time to appreciate the astounding world that is around them every single day.

Unfortunately we can sometimes be a little too preoccupied with our lives, focusing on the negative aspects of the world instead of just ignoring it and looking for the good instead.  

I would recommend everyone to try focusing on the things that they are grateful for, and seeing if it makes you more appreciative of the world around you. You can start off by writing a list of the things that you are grateful for, whether it’s your family or friends. Think about the things that they do to make you smile and write that down. If you love your pets and are grateful for them, add them to the list as well.

Next, add all the little things in life that make you happy, these can be the things such as the smell of freshly mown grass, the feel of the sun on your skin, autumn, summer, spring, etc. eating cookies warm from the oven. It can be anything!
When making the list, you can also think about memories where you have felt happy, and relaxed. They can be recent memories or nostalgic ones from your childhood.

You may think that you’re not grateful for these things, as these are just small moments of life that make you happy. But can you image a world where your favourite moments didn’t exist? Or if someone told you that you would never be able to experience your favourite things ever again? Suddenly you realise how special the ‘little things’ you take for granted are. The kind favour your friend or relative does for you, the amazing environment all around you, everything.

The surprising thing that I found after I created my list was that I had wrote down many things that were everyday things. There were no material items, everything that I am most grateful for is associated with memories, experiences and nature. Although each list will be completely unique for each person, I found that after I wrote my list I was purposely seeking out the items that I loved and I was more appreciative of the world around me as I looked for more things to inspire me each day.

Also, if you’re not having a particularly good time, perhaps you’re unwell or you are a little upset, making a list like this greatly lifts your mood as it is concentrating your mind on the things you like and are grateful for, and it helps you to appreciate the world. And perhaps if you put the beach on the list, you might find that you’re soon taking yourself your favourite place!

Thanks for reading!

Becky 🙂

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Am I Limited?

Am I Limited?

Does epilepsy bring limitations to your life?

When you’re diagnosed with epilepsy your world as you know it quickly alters around you. Things that you were once fully capable of doing, (and still are) have now become a huge risk to your welfare and have to be taken seriously.

When I was first diagnosed in my early teens – a time for expanding your independence, I found that my freedom was being hacked away.  When you’re now being told that people have to be around you more often, and you have to keep the bathroom door unlocked I can remember feeling miserable. I wanted to be an independent person who didn’t have to fear other people walking in on me in the shower!

My family were excellent, they could see, that not only did I not want my epilepsy to place boundaries on my life, but they also knew that I had a mild form of epilepsy that didn’t require intense monitoring.

I still perused many of the things that I did before I had epilepsy. While I was in school I even travelled abroad twice with various trips. From my parents perspective I understand that this must have been huge for them as I was only recently diagnosed.

Today, having epilepsy can be difficult sometimes as I am a fiercely independent person who is also a bit of an introvert likes my alone time. As a teenager I never thought that this would be possible, to be able to live an independent lifestyle and have plenty of time just for myself.

I also love to travel and I have now travelled as far as Australia. By the way it is an amazing country and I would recommend everyone to go!

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Sydney Opera House, Australia

I don’t believe for one moment that epilepsy has put limits or boundaries on my life or how I live. If you have uncontrolled epilepsy that can be unpredictable then I can understand that there is fear and anxiety attached to certain elements of day-to-day activities. But you cannot live in fear, you have to do all the things in life that you love to do or hope to do.  

Thanks for reading!

Becky 🙂

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Are You A Daffodil or A Dandelion?

Are You A Daffodil or A Dandelion?

sunIts spring time. The time for flowers to bloom with their beautiful blossoms, in pastel pinks.

A time where crocuses, snowdrops and daffodils that presents a stunning display of colour.

But these flowers are so delicate, some, without special care cannot survive the harsh winter to witness the spring.

But as I look among all the flowers and the colours, there is another colour of yellow amongst it.

The Dandelions. They grow through almost anything to ensure that they will survive. Many people despise them, they upset their flower beds and they spread like wildfire. But I see a strong-willed plant that will never give up. They will grow through the smallest crack in the pavement and in the tiniest amount of soil. Unlike some of the delicate spring flowers dandelions will experience the same weather and storms and live to tell the tale, looking perfect the next day.

And after it’s flowered – depending on your outlook, it will become a wish.

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So which are you? A daffodil or a dandelion?

Thanks for reading!

Becky

Funny Friendship

Funny Friendship

Over the weekend I was spending some time with my mum. We were having a nice chat, and I was talking about my blog, and we ended up discussing my epilepsy. I was enjoying our talk in a strange way, as my mum was revealing information and feelings about how my epilepsy had affected the whole family, and this is information that I don’t usually get from my mum.

As the conversation between us continued, we were discussing different situations where people in my life couldn’t adjust to the knowledge that I had epilepsy (Sadly this is common).

Then my mum dropped this bombshell…

This following conversation between my mum and I is about a childhood friend of mine (Sarah) and to briefly fill you in. She was my best friend. We went everywhere together, lived a few doors away from each other. The moment school was over we’d be at each other’s houses. All my family knew her as she was always around. When I was in my mid-teens she disappeared (as in stopped bothering with me) I was a little upset but at that age people did drift apart – that’s what I thought *naive*

This is how our conversation went:

Me: It’s disappointing when people can’t accept epilepsy. It’s happened so many times to me, I would like to do as much as I can to educate others so it doesn’t happen to other people.

Mum: Yeah, it was sad when I noticed that Sarah stopped bothering with you not long after you were diagnosed.

Me: …what?

Mum: You didn’t notice?

Me: I noticed that she didn’t want to come over as much, but I thought it was due to us just drifting apart…naturally?

Mum: I saw that she became more and more distant after you were diagnosed with epilepsy, because you two were always so close. After that, it was never the same. I don’t know whether it was her or whether her parents suggested she kept her distance. But she just stopped being around you. I can only think she was scared if something happened.

I was quiet for quite a while and my mum finally broke the silence apologising and asking if she’d made me sad. To which I said no, but I guess I was. I asked my mum how did she’d noticed this and I didn’t. her reply, ‘ A Mum notices these things.’

 

It suddenly hit me, the thought that one of my closest friends could no longer want to see me because of the fact that I had epilepsy. I know my mum was only working on an assumption, but it did seem to add up, and it made me feel a little depressed. Even though we were only young teenagers at the time I thought I knew my best friend well enough to not only notice what my mum had, but I also thought she would be able to talk to me about anything.

When I thought back, she never asked me any questions so I never spoke to her about my epilepsy, I just assumed she’d accepted it.

Over the weekend I had some time to think about it, I thought that it was better that my mum highlighted this to me now rather than years ago. I think a few years back I may have been a lot more upset about hearing how Sarah didn’t want to be my friend anymore because I had epilepsy.

Unfortunately I have a feeling that this happens more commonly to people than I realise. From my first blog you’ll know that I want fewer people with epilepsy to feel judged and  it seems as if it was happening to me even without me recognising it.

If you are reading this and you’ve been in a similar situation to me, where you had a close friend and they suddenly disappeared and you discover it was due to something you had no control over. Forget it. They are clearly not good friends for you, and not worth your time. If they were true friends they’d stick by you no matter what and support you, because that’s what friends do. We all know the words from the theme tune from Friends: ‘I’ll be there for you. Cause you’re there for me to!’  For me, at that time I had other friends who I found to be true friends and they’re still a part of my life today.  The one friend was always happy for me to talk to her about anything that was on my mind and even offered to go to hospital appointments with me.

If you are reading this and you are in the situation my friend was. Perhaps you know someone with epilepsy or another type of condition or illness? The most important thing you can do is support them and be there for them. If you have questions, ask them. Most people who have conditions like epilepsy or diabetes will manage their health themselves, If they needed any help, they’ll ask, and if they need you to know anything just in case something happens, they’d tell you. But it’s guaranteed that if you just spend time with your friend it will make them feel better, and that’s the same for everyone.

Thanks for reading!

Becky 🙂

 

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