A Better Nights Sleep: Useful Tip

A while back, I mentioned the benefits of a seizure diary to help monitor seizure activity and potential triggers in our day-to-day life. 

 

But I also have a second book… 

 

For me, sleep is really important, if I lose too much I know there will be trouble. I can’t afford to go to bed feeling tense with my head swimming with the stresses of the day and sometimes there are issues you can’t always talk about with others.

So a few years ago I began to offload my bad days to a notepad before I went to sleep. 

It worked wonders, and as the period of bad stress reduced in my life, I used it less and less.

Yes, there are times I have had to pick it up again, but that’s life, everyone has stress from time to time. 

I never realised how I depended on it, until recently, when I was thrown into a horrific week and I discovered myself searching for it before I went to sleep. 

It’s my lifeline for when things are tough, and my saviour for a better night’s sleep, you scribble it all down and you feel as though a weight has been lifted. 

I would recommend it to anyone – especially someone with epilepsy who needs their sleep like me!

(Tip – keep the book in a secret place, so you can pour your heart out. I’ve done such a good job of hiding mine I’ve yet to find it! )

 

Thanks for reading!

Becky 🙂

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Tips For Staying Safe In Heatwaves

FullSizeRender(5)I can’t be the only one that has a love hate relationship when it comes to summer and hot weather.  You want to be outside enjoying yourself, but you overheat too quickly. You spend most of the day walking around like a zombie after been awake all night, and your are either coping with auras and seizures or worried that due to the heat something is bound to appear soon. Then you worry about worrying – that awful cycle.

I used to always dread summer, as it would be a time where my health would decline. Thankfully, the last few summers have been good and here are 5 tips that I follow.

I hope these help, even now I am learning more things to help me stay protected from the heat.

1. Stay hydrated

This is really important. The moment you feel thirsty grab a cold drink. Avoid caffeine like; teas, coffees and energy drinks as they will dehydrate you.

I highly recommend buying a drinking bottle, you can keep it in cool in the fridge and take it with you if you’re go out.

 2. Apply plenty of sun cream – don’t burn!

You may think this sounds obvious, but it’s surprising how many people don’t bother.  I will also share this tip I recently learnt. When buying sun cream check the UVA & UVB star rating as well as the SPF. As we know, UVA & UVB protection blocks the harmful rays from the sun, so if your sun creams UVA & UVB rating is low it’s not protecting you from the harmful rays.

If you’re worried that good sun cream will be expensive, it won’t. I bought a SPF50 sun cream with a UVA star rating of 5 (the highest) for £1.50.

Suncream
This suncream gives 5* UVA protection and medium SPF protection

(It’s also useful to renew sun creams every year, to make sure they are working their best.)

 3. Head for shade

When out and about be mindful of how long you are staying in the sun, especially during the middle of the day. Don’t push yourself if you start to feeling hot or tired and take a break and relax in the shade.

 4. Invest in a fan

It’s never a good thing when your sleep gets interrupted because of hot, humid nights. It’s important that we get our rest! Fans can be an excellent solution to this problem.  Tower fans are usually good, and they are not too expensive

5. And finally…Relax!

One of the worse things that you can do in hot weather is exhaust yourself. Its only natural that you are going to have busy schedules, and that combined with hot weather can be a dangerous mix, especially if sleep has been disturbed during the night. The most important thing you can do is recognise when you are feeling a little depleted and take a break, head for shade and have a drink.

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I hope these few tips have been helpful,

Hope you all enjoy the sun, stay safe.

Thanks for reading,

Becky 🙂

 

 

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!)

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 🙂

 

Headaches During Heatwaves

Anyone who lives in the UK will be able to tell you we are currently experiencing a bit of a #heatwave.

Anyone who lives in the UK will be able to tell you we are currently experiencing a bit of a heatwave.

I have never been the kind of person who copes well in the heat. I have very fair skin, I have never had a tan, and I burn instantly even in mild weather. So I’m the kind of person who avoids sun and loathes heatwaves – I know I’m in a minority on my sun opinions.

Yesterday I woke up to a boiling hot bedroom and a terrible migraine which I suffered from for the rest of the day.  For hours nothing seemed to relieve the horrible ache, it was awful. The ironic thing is, is that my epilepsy medication is Topamax which is also used as treatment for people with migraines…it didn’t help me yesterday!

The two unfortunate things about yesterday were that:

  1. It was Father’s day and I ended up making my dad worried about my health.
  2. I was asked to look after my baby nephew who also wasn’t enjoying the heat, and then decided to cry for ages – which just made my headache worse! 😥

It eventually passed after I drank plently of water and slept most of the day away.  Thankfully I’m back to my normal self today.

although I was pretty miserable yesterday as everyone else was out enjoying the sunshine and having barbecue’s and stuff, I’m glad to say that I didn’t have any aura’s, so I am extremely grateful for that.

Today I’ve stayed in the shade and respected the 30 degree heat.

Hope you’re all enjoying the warmer weather.

Thanks for reading,

Becky 🙂

Your Thoughts on Hospitals?

Anyone with epilepsy will have their fair share of stories and experiences of hospitals. We’ve been rushed in by ambulances, woke up in Resus, had all kinds of scans and blood test etc. and although we’ve received excellent care from dedicated people, the whole experience can leave us feeling nervous about hospitals. I guess it’s just association e.g. ‘last time I was here I was ill.’

Due to these different experiences, people will have their own varying thoughts and feelings about hospitals, its only natural.

Normally I am fine with visiting hospitals but I was surprised when I recently found myself feeling a little anxious at my old hospital:

The other day I had to take my brother to the hospital for an appointment.

When we entered the building that ‘hospital type’ smell instantly hit me. I felt uncomfortable, and a little anxious, and quickly realised it was attached to old memories of frequent visits to the A&E and outpatients from my early teens.

Being diagnosed with epilepsy at 14 classed me as a child, so I was under the care of paediatric consultants.

As you’ve probably guessed, being classed as a child at that hospital meant that I stayed on children’s wards, and had to go to the children’s outpatients departments as there was no department for adolescents = embarrassing situation for a teenager.

When I was 17 I was classed as an adult and transferred to a different hospital.

We walked past the children’s outpatients department and I briefly stopped and looked at it. It was closed for the day, and it looked dark and sad. It was so much smaller than I remembered – I didn’t think I had grown that much since I was 14.

For me, my height was the biggest embarrassment of all. Today I am 5’10 tall and I wasn’t much shorter as a teenager.

So picture me, sat there in that waiting room among all the little children.

I would then frequently have people staring at me or have women engaging in ‘mum chat’ with me and enquiring where my child was.

The other problem was that the nurses had to record my height and they could never reach high enough.

Its one of those things that’s funny to look back on now, but at the time I was really quite sensitive about.

I was surprised by how visiting a place for just a moment could evoke so many memories.

Even though I remembered going to the hospital I didn’t think that it had been that emotional for me.

But to stand back in the same foyer and smell the same hospital smell transported me back, and I remembered just how nervous, embarrassed and uncomfortable I had felt during my visits to hospital as a teenager,  and it all happened in an instant.

 

 

So whats your thoughts and feelings on visiting hospitals?

Do you find that they have a certain amount of anxiety attached to them?

Or do think when your there that you’re in the best place if you become unwell? 🙂

Thanks for reading,

Becky 🙂