Funny Friendship

Over a decade later I discovered that my epilespy had effected an important 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 🙂

 

Friendship-quotes-List-of-top-10-best-friendship-quotes-16

 

Advertisements

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:

393af317c3ea19eb3af1c3eb48acbee6

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:

bc16904ac0c50d2e10aec429371eb652

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 🙂

 

Mothers Day

Here in the UK today it is Mother’s Day, so I thought I’d write a blog about my mum.
I honestly don’t know where I would be without my Mum. She has been such an important person in my life, like Mums are for so many people.

With regards to my epilepsy diagnosis it did leap into my life. I was young, I had no accidents and there was no family history of epilepsy. So I imagine the day that I had my first seizure must have come as a deep shock to my Mum and my family.

I often hear of how seizures can affect relatives emotionally after witnessing them.  I cannot imagine how my family must have felt the first time it happened, with no idea of what was going on or what was going to happen next.

Anytime I had to stay in the hospital my Mum would not leave my side,  sleeping in a chair overnight. I would plead for her to go home to have some rest, but she would tell me that she wouldn’t rest at home. At the time, I was about 14-16yrs of age, and thankfully the hospital was admitting me to the children’s ward which was deadly quiet. A few times I had a whole ward to myself. When I was about 17 I was told I had to go on the adult ward which meant my mum had to go home. That ward wasnt quiet!

My mum has been completely selfless like Mums are. When I was in uni, there were a number of times where my health took a downward turn, and before I could say anything my mum had booked the day off work to look after me.  She was just there whenever I needed her. And she still is.

My mum also taught me a huge amount of driving, and as I mentioned in a previous blog. As someone with epilepsy I NEVER thought that I would be able to drive. She had infinite patience and would take me out for little lessons after she’d been working a full day. She even booked a day off to take me on my test – which I passed, and she’d bought a card in readiness whether I’d passed or not 🙂

If I want to chat to someone about something that’s troubling me, she’s there,

If I need someone to join me for support at a hospital appointment, she’s there,

If I need anything, she’s there.

Everyone has someone in their lives who is their biggest support. I can proudly say that my mum is my biggest support, and the feelings mutual. She’d do anything for me and I’d do anything for her.

Happy Mothersday to all the Mums with epilepsy and to all the mums supporting their children with epilepsy, and happy PurpleDay too!

Becky 🙂

 

Feeling Sleeepy

 

For the last few days now all I have wanted to do is sleep. I think anyone with epilepsy will be able to empathise with this feeling!

I think it’s not only a side effect of my medication but also that my energy levels are a little lower than the average persons. I’ll do a full day of work and then want to be lazy and nap in the evening.

It’s something most people find hard to appreciate; even my own family finds it hard to understand. So, I have been feeling tired for a few days – not drained, but, you know that comfortable dozy feeling you have where if you just closed your eyes you’d be completely asleep? Well that’s how I’ve been feeling. I’ve been trying not to sleep the day away or drain my batteries either; I’ve just been taking things easy. Do some work…have a rest.

Sometimes when I have been working full-time, I come home and I just had to have a nap for about half an hour because I’ve felt so drained, but I always feel a million times better for doing so.

I have had many conversations with friends and family where sleep and rest has come into it. I am the type of person who likes to get my 8 hours and I would fear a job where  very early starts or shifts were required. I have great respect for people who do work shifts and nights, I really do. But to consider my health I know that I would quickly become unwell if I had to work shifts. But my own family and friends find it hard to understand this, saying that I would adjust, and that because I woke up at 9am the other day…I’m lazy. To be honest most of these comments are made in humour, and I know my limits and what I can and can’t do in order to be healthy.   I used to want to be a midwife, but knowing the long hours, shifts and stress that is involved in the job I soon realised that it might not be the perfect job for me.

I have had worse sleepy episodes. I used to be on one medication and its main side effect was sleepiness and I was sleeping all the time. It was actually my parents that sent me back to my consultant asking for alternative medication as the sleepy side effects were getting in the way of my day-to-day life.

But when you consider things, it makes sense that most medications have a sleepy side effect as they are calming the electrical activity in the brain. But if you too are feeling too sleepy and you know it is a side effect of your medication. Consider having a word with your consultant.

I know this sleepy phase won’t last long and providing I don’t stay up late and actually get some sleep when I get to bed I’ll be fine in a few days.

f8e7bcdf8fc90b299060d9000cecc4c9

Becky

The Anxiety of Epilepsy

In my last blog I mentioned the anxiety that’s attached to epilepsy. This is a very natural thing that everyone with epilepsy will feel. The uncertain feeling whether something bad is going to happen.

Being invited somewhere or wanting to make plans, but due to feeling unwell or uncertain about things you suddenly cancel everything thinking it’s better to be safe than sorry.

For me, I’ve suffered with auras sometimes weeks before a seizure would eventually happen. The moment a tiny one would happen I would worry and panic, and stay in the house…just in case.

As you can imagine, this did great things for my social life, and many times no serious seizures ever occurred. But I noticed that the more I worried over my auras the more intense they would become.

I decided to record in a diary every time I had an aura. I also noted how I was feeling at the time. If I was tired, stressed etc.  When I looked back over the weeks and months I realised I could explain why every aura might have occurred.

I made sure I avoided stressful situations (when possible), I would make sure I had plenty of sleep, I started drinking more water, eating healthier and taking better care of myself in general all in a bid for better health.

When auras appeared, I would realise, ‘oh, I’m tired,’ and get some sleep asap. But the most important thing I saw was that the knot in my stomach that I had always experienced, had now disappeared when I suffered an aura. And not only that but week on week my auras were declining as my medication began to work for me.

On reflection I wonder that for me those initial few auras were causing me to panic, producing excess adrenaline – which your body doesn’t need at that time, exasperating the situation.

I have found remaining calm /removing the anxiety to be extremely helpful on my journey through epilepsy.

Becky

 

 

Epilepsy Positivity

OK, this might be hard, I know. How can you look at epilepsy, the condition that takes away your independence and strength, and look at it positively?  Trust me there have been many days where I have hated what’s been happening to me and felt weak. I’m sure you have felt the same, its natural.

One time, I had been feeling down for days and it dawned on me that I could dwell on my sorrows for as long as I wanted – it’s not going to change my situation, my epilepsy was now a part of me and I could either keep fighting and be fearful of it, or I could accept it and embrace it. And if it happens, it happens. I just have to remember it’s not my fault.

I questioned the reasoning of how this ended up in my life, ‘why me’ – but it’s not going alter anything.  I quickly opened my eyes to the world around me, yes I my condition is nasty and I can’t do some of the things my friends do. But compared to so many other people in the world I am extremely lucky.

I noticed how much my family, and friends loved and cared for me. They don’t always show it in a mushy way, but they are they by my side when I need them.

Many philosophers and religions believe that we are here in life to learn lessons. I  then thought that maybe having epilepsy as part of my life is something that I need to learn from and be comfortable with.

Epilepsy can be a worrying and frightening experience for many people. I discovered that looking at my epilepsy in more of a positive light, helped remove a huge amount of anxiety for me.

However you currently feel about epilepsy, I hope everyone with epilepsy will be able to be positive and free from anxiety.

Becky 🙂

 

25d46d6061fa4f69fa19cc466a7f8aa6

 

Keeping Relaxed

Many people who have epilepsy find that the stresses of day-to-day life can aggravate their condition.

During one of my most stressful times – university where I was also battling a crazy family life, people were suggesting for me to take up yoga, but I couldn’t find the time, spare money or a lift to the classes.

Naturally, I find doing the things that make you happy to be an excellent way of reducing stress.

But even then, I have had trouble sleeping.

One effective way of relaxing I find is through meditation, I listen to recordings on YouTube before I go to sleep, as this is the time my mind is really overactive.  I find these recordings to be incredibly effective at removing that constant chatter, helping me sleep.

I know that not many people have tried meditation at they think it’s a bit ‘out there’, but it really does relax you and clear your mind, I would recommend it to anybody.

For example, I was listening to one the other night and woke up about 4am wondering why I was uncomfortable – I had fallen asleep during the recording and still had my giant headphones on!

I’ve also listened to meditations the night before tests as they help promote positivity and self believe, which is perfect for me, and you do wake up with a much more confident attitude.

Here is a sample video from Youtube 

Tips:

  • The majority of relaxing music is just that, with ocean waves and gentle music. It will just remove the over thinking in your mind and allow you to relax.
  • There are some videos which use things such as white noise and… alpha waves? Some descriptions have an epilepsy warning in them so I would steer clear of them. You can always consult a healthcare professional you want to listen to them.
  • Some tracks are really relaxing others are annoying, and a little cheesy, but it’s about finding something you like. I have had similar results with classical music but I do find that sometimes I end up listening to the music!
  • Last tip, if you have an iPhone and you want to save your battery, once the video starts playing, press the off button on your phone once so the screen goes black. The video will stop playing, but when you press the home key, on the screen you will notice you can press play without seeing the video, just tap the phone screen off again and it will continue playing for you!

I hope you’ll give it a try to see it helps you stay relaxed.

Becky 🙂