Where Have I Been?

Hello!

Apologies for a lack of post in recent weeks, I haven’t been on holidays or anything, I have had the flu. 😦

It’s been a nasty dose, the kind where you don’t even want to leave the house.

But I’m glad to report that I’m on the mend, I’m just left with a terrible cough that scares the cat out of the room.

However it’s surprising, even though I might have controlled epilepsy, I have been anxious over these past two weeks thinking that the sleepless nights and my high temperatures might cause a seizure.

Thankfully I was ok, I did the best I could making sure I had plenty of rest and didn’t over exert myself.

Even today, I woke up feeling miles better and went out, planning a massive day of shopping, walking in the fresh air and catching up with friends. But after an hour out I felt really depleted and realised that I wasn’t as healthy as I originally thought. So I decided to listen to warning signs and went home for a rest.

Yes it’s boring, but it’s better that being unwell. (I have learnt the hard way in the past!)

Hopefully, I’ll be 100% again in the next few days!

Thanks for reading!

And hope you’re all well!

Becky 🙂

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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 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.

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.

IMG_3149

 

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 🙂

 

 

The Humanimal Trust: Enhancing My Outlook on Medicine

Many of us have medical complaints or take medications, but how often do we think about the bigger picture? 

Did you know that there is a charity that is fully committed to improving how the industry is currently run?

A few of years ago a family friend of ours became a vet and got a job at a famous veterinary practice called Fitzpatrick’s Referrals. If you havent heard of Fitzpatrick’s they have their own TV show called The Supervet, which shows pioneering surgery and treatment for animals.

Before my friend worked there I had honestly never heard of the place, and initially I was tuning in to see if he was on TV – he wasn’t. I think I saw him twice. But it didn’t matter, because I have now became addicted to the programme.

The practice boasts a brilliant and dedicated team and it is clear that for all staff, their job is their passion. 

Yes there can be sad moments, but you always know that they give their best and do everything that is humanly possible in order to improve an animal’s quality of life.

The show follows the practice’s owner Professor Noel Fitzpatrick, Noel is like one of those rare teachers you might have had in school with contagious enthusiasm for their subject. He has so much passion about his profession; it makes everyone else just as equally absorbed and you soon realise you have been learning loads while watching the show, to the point where you find yourself talking to friends about stuff like orthopaedics over a cup of coffee!

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Professor Noel Fitzpatrick, founder of The Humanimal Trust

After discovering about Fitzpatrick’s, and adoring the whole ethos of from ther work to the love and hope that they provide to every patient and family that reaches them, I soon found that there was also a charity, founded by Noel Fitzpatrick. You would expect a charity that’s created by a pioneering veterinarian to be focussed on animal health but it’s not. It’s called The Humanimal Trust, and it focuses on humans and animals equally through the concept of one medicine:

 The theory is quite simple:

Human + Animal = Humanimal

One medicine is the idea that humans and animals will be treated equally in the field of medicine.

There are basically 3 main parts to the ethos of The Humanimal Trust and their concept of one medicine:

  1. Clinical communication between vets and doctors.

‘Everyday there are advancements and research breakthroughs in both veterinary and human medicine, yet at present neither profession collaborates to share their information that would progress treatments and procedures using regenerative medicine for the benefit of humans and animals simultaneously.’[1]

A couple of weeks ago, I listened to a BBC Radio 4 interview that Noel had taken part in, it discussed the topic of: ‘Should Doctors and Vets Work More Closely Together?’, an audience member mentioned that while working in Australia as a doctor, he and his colleagues learnt that vets had solved a rare medical issue that had been baffling them, the solution was discovered to be a simply a lack of copper absorption. The veterinary community already knew about it and had been treating sheep for it.[2] communication meant that the problem was easily solved. 

When I first heard that The Humanimal Trust wants to improve communication, I thought about how beneficial it could be in sourcing medical solutions and treatment for so many people.  young-1835731_1920

As many of you know by now I have epilepsy, and I can remember thinking that if there was a vet somewhere in the world, who had perhaps made immense progress towards epilepsy which could be of benefit to humans, I would like to know about it, and I think many other people would feel the same.

  1. Medication for humans and animals that is ethical

Ethics in medicine is an important topic, and The Humanimal Trust is addressing this.

Currently, if we have any medication or implants they have been tested on animals in order for them to reach us, meaning a perfectly healthy animal has sacrificed its life for our medicine.

In 2015 approximately 4,300 dogs in the UK sacrificed their lives for human medicine, in the USA, that number was nearer 50,000 [3] . These are shocking statistics, and since I have been a child I have always been concerned about animal welfare. I have never been content with the fact that animals have been used to test drugs, and that our only consolation is that it’s safer than endangering human life. But, there could be a possible solution.  The Humanimal Trust proposes that with the diseases and conditions are practically identical in humans and animals, medications and implants could be trialled on animals that are actually unwell, and then co-operate with pharmaceutical companies, which would then produce more ethical medications. [4] This would be benefiting both humans and animals.

Human medicines are huge business, so there is a risk that pharmaceutical companies may see more profit in the way they currently run business. I once sat next to my GP as we went through a list of generic and branded medications that I could have. I saw exactly how much they were costing the NHS to purchase, and the prices were eye-watering.

  1. Clinical Trials

A vital part of The Humanimal Trust is that they also conduct their own clinical studies; The Trust is potentially the only charity of its kind in the world that is funding clinical research in animals and humans at the same time.[5]

It’s understandable that we all want cures and treatments for our illnesses, but there other problems that can also arise without warning, for example MRSA and Ebola. These bugs are the same in humans and animals, so what’s the best plan for when a superbug strikes? Especially as it’s no news that healthcare professionals can sometimes overprescribe antibiotics:

‘You don’t care about MRSA until it’s in your child and yet The Humanimal Trust is funding a project to look at bacterial resistance with over prescription of antibiotics, it’s the same bug. We have DNA mapped, every bug that comes into my practice it’s the same bug that you or your child would have. Why are we not doing a study in parallel? If doctors are going to be over prescribing antibiotics and vets are going to be over prescribing antibiotics,…we are in a mess.’ (Noel Fizpatrick)[6]

 

So that’s the Humanimal Trust! 

Im grateful for learning about Fitzpatrick Referrals through The Supervet, I believe that they are more than just a referral practice. They show unconditional love and hope to everyone regardless of whether they are animal or human.

 I have been equally appreciative to discover the amazing charity of The Humanimal Trust as the charity also provides that same love and hope with the pledge to benefit both humans and animals.

I truly believe that The Humanimal trust has the potential to change the world of medicine, and benefit so many lives (both human and animal!)

Before I knew about The Humanimal Trust I always believed that our health care system was pretty good, and I couldn’t think of much that needed improvement. I’ve now realised that things could be improved and great things could be gained. 

The most important thing that we can do is support them. Here is a link to their website if you would like to know more.

If you would just like to spread the word, feel free to share this article.

 

Thanks for reading!

And thank you to The Humanimal Trust for your support with this article 

Becky 🙂

 

[1] http://www.humanimaltrust.org.uk/ 05/2017

[2] http://www.bbc.co.uk/programmes/p04zc7ws ,05/2017,  The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together? 18:37

[3] https://www.youtube.com/watch?v=YF0FAI0eAKc 05/2017 Professor Noel Fitzpatrick at The Hay Festival 2016

[4] http://www.bbc.co.uk/programmes/p04zc7ws 05/2017, The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together?

[5] https://www.youtube.com/watch?v=6eoeRRcIzt8 05/2017, The Humanimal Trust, Sharing the Message

[6]http://www.bbc.co.uk/programmes/p04zc7ws 05/2017, The Evidence: Humans and Animals. Should Doctors and Vets Work More Closely Together?

[7] pictures courtesy of The Humanimal Trust: http://www.humanimaltrust.org.uk/ 05/2017