Have You Felt Supported By Your Neurology Team?

Today I am asking an importing question, have you felt supported by your neurology team? From your diagnosis, through to the altering medications, the life changing moments, and even the highs and the lows that epilepsy brings.

As epilepsy is a life long condition, your neurologist becomes an important part of your life.

You would expect your neurology team to provide you with all the help and support you require regarding epilepsy, however not everyone receives it and I have been one of those people. Today I have decided to share my experiences with you.

This has taken a lot of consideration,  as I wanted to remain as positive as possible about epilepsy, but I realised that if I am open about my experiences I could potentially help other people, and this is what this blog is all about.

 

My Experience of Neurology Teams

Thankfully, I have great memories of my first neurologist. She provided me with all the advice and guidance I could need, in one situation, she even brought in one of the top UK paediatric neurologists to see me. I couldn’t fault the care.

I had a neurologist who asked if I was learning to drive when I was 17, this was his reply when I told him I was learning;

You shouldn’t be learning to drive, your epilepsy isn’t controlled! I demand that you hand your provisional licence into the DVLA at once!… (few minutes gap as no one was talking) I won’t be upset if I were you, I have to tell taxi drivers and bus drivers that they can no longer drive every day, and driving is their living, this is nothing to you!”

So as you can imagine I left that appointment upset. The moment I turned 16 healthcare professionals became obsessed with topics such as pregnancy while never discussing the subject of driving. (I wouldn’t have had lessons otherwise). But a decade later I have no children and I can legally drive 🙂

I will confess that I wasn’t exactly the perfect patient either, up to this point not one medication had worked for me. It’s frustrating when medications begin to alter your mood, increase your weight and damage other aspects of your health for little or no gain. So I decided to see how different my life would be like medication free.

I soon had a new consultant who was overly anxious when she discovered that I was medication free. I consider myself to have very mild epilepsy with perhaps one seizure a year, and although I appreciate that I was at risk without medication when I wasn’t taking medication I felt the same, perhaps better, because I had freedom from side-effects and saw no increase in seizures.

My neurologist would frequently discuss the seriousness of my condition even mentioning that I could die if I wasnt on medication.

I can remembering thinking that if someone has cancer and decides to decline treatment, the doctor respects their decision. But this situation felt pressured…

I was about 18, I was home alone, still medication free, and my support nurse called me. It was obvious that the intention of her call was to get me on medication again. I explained to her that I was doing well and was concentrating on a healthy lifestyle. She told me to stay away from ‘stupid’ ideas (which she apologised for) and later went on to explain to me that she has had ‘patients who have died from this’. I urged to her that my epilepsy is thankfully minor and always produces plenty of notice and auras. Her reply, ‘what if it doesn’t?’  Eventually, I pitifully agreed to begin medication again, hung up the phone and cried. I felt like a push over.

After two years of trying various medications, I found on that thankfully worked.

After my consultant were pleased that my medication was working, I received a letter signing me off from their care.

 

Why did I share this story?

I know I don’t have the most positive experience with some of my neurologists or support nurses, and I have not written this article to slam neurology departments. I fully appreciate that the hospital had to be realistic and had to provide the information related to my condition, and I am grateful for the work they do, but I sometimes wonder how different the outcome would have been if they had been slightly more tactful and resourceful.  There were times where I would leave appointments upset, reaching the car and beginning to sob, but thankfully my mum was there to give me the best encouragement, support…and hugs 🙂

If you have a child, relative or friend who is experiencing similar I think it’s important to place as many positive thoughts in their mind, telling them that you are always there to talk, and reminding them of all the amazing things that they can achieve.

 

How Supported Have You Felt By Your Neurology Team?

You might think that the neurology team are not supposed to be there to support you, just to give you medical and professional advice.

I however think that having a diagnosis of epilepsy is a life changing and lifelong one which requires support and positivity where possible.

I would be interested to know different people’s experiences and views of their neurology team and how supported they have felt.

Thanks for reading,

Becky 🙂

 

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When Family Plan To Move Away

Yesterday I went to Somerset to visit family. 

Their story is like something from a story book. My family are kind of globe-trotters, they have lived in various places abroad for many years and have been back in the U.K. for nearly a year. 

They are currently living in a house which everyone falls in love with. It’s set deep in the country, full of character – being over 300yrs old,  has lots of rooms, lots of ground, and has fruit trees in the garden and everything. 

The House


So when I went down to visit yesterday, the sun was blazing, the company was amazing, and it just seemed like the most idyllic place in the world. 

We went for a walk, the dog was happy and excited all day, wanting everyone to throw a frisbee for him, and we had a barbecue in the evening. 

Happy Dog In The Garden


I got sunburnt, which was no surprise. But my suncream didn’t fail me, I just forgot to apply some to my neckline. So naturally, I’m feeling a little sore and wounded today, but I am just glad that I didn’t get heat stroke. 

My family have plans to live abroad again and want to leave within a few months, so this trip felt a little bittersweet. 

There have been many years that I haven’t seen them, and when they lived abroad it felt surreal to finally visit them.

So yesterday I was sat there appreciating the moment and the company before they go, before I don’t see them for years again, and before I never visit that lovely place again. But, I realised how lucky I was to have them back closer to us for the past few months, and yesterday meant a lot to me.

Although I love them very much and I will miss them, I know that they have to do what makes them happy, and I know that I can see them in their new home and visit a new place in the world. 

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.

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.

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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 🙂

Why I Chose To Donate My Hair To Charity

This time last year I donated my hair to charity. You might be thinking, why didn’t you raise money for an epilepsy charity? But at the time the issue of cancer was close to my heart.

It’s strange when situations happen to us personally, we just battle through them, but if something happens to the ones we love and care about, it affects our emotions deeper somehow. We want to remove the pain and suffering for them and we feel hopeless when there is nothing that we can do.

Cancer has unfortunately affected many people in my family and thankfully there have been good outcomes, but about two years ago I lost a good friend of mine to cancer and it was completely devastating. She was the one of those rare people who was a true friend. She always there for you when you needed her, we may not have seen each other for a while but when we did, you wouldn’t think any time had passed. She was always happy and smiling, and she was genuinely kind. Basically she had all the best qualities a person could have.  We’d known each other since school and I always assumed that we would be in each other’s lives forever, which made it harder when I discovered that I wouldn’t see her anymore. No one wants to say goodbye to someone they care about.

Naturally this leaves a small gap in your life, even now I will be reminded of her, but more than anything I think of her family and her two sisters, I and think of how strong they are.

Last year I decided to try to turn my sadness into hope by trying to help others and raise money for cancer, and because I had very long hair at the time, I realised I could donate my hair and literally give something back.

After witnessing family members having chemotherapy I understood what it was like to lose your hair through cancer treatments. The main charity for hair donations is The Little Princess Trust which makes real hair wigs for children suffering hair loss from illnesses such as alopecia or cancer. This was the charity I decided to support.

Before I donated my hair, I had NEVER had my hair cut short before, so this was a huge step for me. In the end I donated 10 inches of my hair. It was a really strange sensation having so much hair being cut off all at once, feeling the weight disappearing, and holding it after was weird. I couldn’t believe just how heavy it felt.

 

 

My hairdresser was amazing; he helped raise loads of money for me and even cut my hair for free! In the end I raised nearly £1000.

The following weeks and months were unusual as I had loads of people commenting on my short hair. Even now if I meet someone I havent seen in a while they will notice that I have had my haircut.

During the past year, after trying a couple of short styles, I am now growing my hair again.

I have been going through the milestones where I could pin it back, and then tie it back. Although I didn’t mind having short hair, I also missed long hair a little, the one day I realised I could hold my hair comfortably in a ponytail, and there was a lot of hair there! Not tiny strands that escape before I had chance to throw a bobble around them, and I felt pleased. I then considered all the people recovering from cancer treatments that achieve these same milestones but feel a million times happier.

The odd thing I noticed was that I decided to donate my hair as sponsored runs etc. could mean a potential disaster for me and my epilepsy. But people were giving my excellent praise saying I was ‘brave’, as if it was something unusual, and even before I had my hair cut, my hairdressers were giving chances to back out if I wanted. Even though I appreciated their support, I thought –  its only hair. Thinking, I’m lucky, my hair is healthy and it will grow back, and I wanted to help a child who needed it more than me.

I plan to keep growing my hair and have plans for another donation in the future.

Becky 🙂

 

 

My Time at The Hay Festival 2017

The other week I mentioned that my one passion was music; well, my other passion happens to be books, I’m either spending my free time listening to music, or reading books.

There is a place called Hay-on-Wye, its close to where I live, its full of book shops, and every year it holds a literary and arts festival. You’d think it would be my favourite place, but until this year I had never been there before! 😮

Living close-by I initially planned to visit nearly everyday, but unfortunately my brother injured his back, and needed lifts everywhere, so I didn’t visit Hay as much as I hoped. With regards to my brother, it was nice to finally return the favour, after the many years that he helped me when I couldn’t drive.

I went to Hay twice in the end.

For my first visit I saw Graham Norton, he’s just released his debut novel called Holding, and yes I’ve already read it. I really enjoyed the book and would recommend it. If you’re expecting it to be funny, it’s not, it’s actually a bit of a murder mystery and there are many at cliff hangers. One night while reading the book, I thought I’d read one chapter, I then looked at the clock and realised it was like 2am and I’d read half the book!

 

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Graham Norton, taking questions.

Graham’s talk was interesting, he discussed his book, and he talked about his career. He was exactly like you see him on TV, relaxed and funny. The audience asked questions at the end there were many questions about guests he’s had on his show, such as; ‘Who’s been the sexiest guest?’ – By the way I did not ask that, I didn’t ask any questions, as you will understand in a moment.

 

I was lucky enough to have my book signed by Graham after his talk. Although I didn’t feel nervous approaching him, I just couldn’t think of anything interesting to say, and when I eventually made it to the front of the queue all I said was; ‘How are you?’ which was kind of stupid. But he was really nice, and you will be pleased to know he was in good health.

While I was at Graham’s book signing I also met the historian Lucy Worsley who was also really lovely, I came away with a book signing from her too so it was a very good day!

Due to those family commitments I returned to Hay the following week to see a talk by Professor Noel Fitzpatrick.

Noel’s inspiring talk was on the subject of, The Reformation of Global Health in Man and Animals. I have recently written an article about Noel’s charity The Humanimal Trust, if you want to know more.

Noel is extremely passionate about this topic and I was glad to see so many people there to listen to him. I was also interested to learn about parts of his childhood and the veterinary practices he’d had over the years.

The questions at the end of Noel’s talk were very different compared with Graham Norton’s. Graham’s questions were mainly celeb based which would result in a hilarious story, the atmosphere in the tent with Graham was light and friendly like being with an old friend.

In the same tent, a week later, Noel’s questions were much more personal, some seemed to centre around his wellbeing, making sure he took care of himself, as he so busy with his work (again it wasn’t me). But although there was much laughter during Noel’s talk, it was clear that the audience had huge admiration and warmth for Noel, like a supporting family.

 

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At the end of Noel’s talk, as he leaps into the audience for a photo.

The Hay Festival was amazing to see, with its deck-chairs laid out for you to relax in and read a book, and people of all ages and from all over the world, casually strolling around just enjoying the day.

I also popped to the town which is full of tiny independent shops and loads of books shops.  One book shop in particular was like something from Harry Potter, small from the front but huge on the inside with wide oak floor boards, old wooden shelving, and over three storeys tall. I was in heaven!

Overall I had an incredible time at Hay, I feel incredibly lucky to have seen two brilliant talks, and to have such an amazing place on my doorstep.

I would definitely recommend everyone to visit the Hay Festival one day, especially if you love books of any kind you will really enjoy it. 🙂

Becky

London

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

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

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

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

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

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

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

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

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

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

 

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

Becky