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Living with Functional Neurological Disorder.

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The battle of PTSD

When someone smiles you assume they are happy. Sometimes that smile is a disguise covering up pain they don’t want anyone to see.

I always assumed Post Traumatic Stress Disorder (PTSD) was something experienced by service people, those in the army and like professions. The thing is it can happen to absolutely anyone. Despite the brilliance of our brains, when we experience trauma, it leaves an imprint that changes the way our brain functions. It’s basically a survival mode, your emotions centre goes hypersensitive. The trauma will always be there but there are ways to retrain your brain. However, you need a lot of love, support and understanding to get through it.

If someone you care for is experiencing PTSD, the list above gives you an idea of what you can do to help them.

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Live the life you imagined.

Sometimes it feels as though life is flying by in the blink of an eye. Last year, we started to look at our situation and think about where things were going wrong.

I have been so ill for so long and that’s had a huge affect on us financially and things were going from bad to worse. We knew that we couldn’t possibly carry on, we have been ‘stagnant’ for too long. We spoke as a family with our boys and decided that we would go for it. We decided to move to Scotland. It was by no means an easy decision but we have family there, the cost of living is much better and it could give us a real chance to make our lives better and easier.

That was back in September last year and now, just like that, the time is nearly upon us. We are moving in just 3 weeks. I’m feeling so many mixed emotions. I am leaving behind some amazing people who have helped me through some extremely tough times. My beautiful sister, my amazing best friend and my fantastic Uncle and Auntie. I honestly don’t think I would have made it through the past 5 years without their love and support. I am also leaving a job that I love. I have been so lucky to work with some amazing and inspirational people. Despite the fact I have been so ill, I have still had the opportunity to become a better teacher than I ever thought I could be. I will always treasure the memories of the children I have taught and hope to use what I have learnt in my new job role in Scotland.

I have to mention the current heat wave that has been extremely difficult to cope with whilst working. My fellow chronic illness warriors will understand just how much these extreme temperatures can set you right back. However, I have been pleasantly surprised with how well my brain and body have coped. If this had happened a year ago, I would have been in hospital. Thanks to my continuous improvement, I haven’t missed a day off work.

I’m hoping that my brain manages to cope with the stress of moving. I have much in place to help me get through this. Of course, I must pace myself as much as possible and not let my anxiety affect my life. We’re going to do this, it might be a big mistake but it could be the best decision we make as a family. No one ever gets anywhere by lingering and wondering what if? You never know until you try.

Thanks for taking the time to read my story.

Charlotte xxx

Change is coming.

I’ve been back on track this past week. I’m so pleased after having such a bad week previously. Unfortunately, I’m fully aware of what caused my major relapse.

When someone close to you, who you trust, attacks you at your most vulnerable it is a huge trigger of symptoms. Sometimes people say things they don’t mean and I understand that but I’m a true believer in the saying, ‘treat others how you would like to be treated’. I’m no Saint but I would never intentionally hurt someone that I care about. All that aside, I had a choice, I could either fall apart and let my illness win again or kick myself up the bum and get back to my healing journey. Thankfully, I’m so much stronger now, stronger than ever before. I’m in control of my own mind and life. I’m going to win this battle.

Time is so precious, life has a habit of flying by and too often, we don’t have time to reflect and appreciate the little moments. My eldest son turned 16 last weekend. It seems that only yesterday he was starting school. In just 5 weeks, we leave our home to set off on our exciting new journey to Scotland. Everything is coming together and I’m aware of the importance of not stressing as this will make me poorly.

I’m going to miss my life here, my friends, family and my work. My new job is going to be quite different from class teaching but I’m excited for the challenge. I’m passionate about education and learning and look forward to putting my passion into good use.

Change is hard for everyone but you can’t spend your life wondering ‘what if’. We’re struggling constantly, financially, where we are now and I don’t want to struggle anymore. I don’t want much, just to be comfortable enough to be able to afford to buy things that we need and eventually get a little home of our own would be more than enough. Sadly, those opportunities will never happen here so in order for our family to progress, we just have to give it a go!

I have the option of being referred to a specialist in FND when I move to Scotland. However, I’m not sure there is anything more that can be done. Thanks to the rehabilitation course that I had in January, I now have the tools to manage my illness myself. Yes, there will of course be ‘blips’ but I can manage them independently and in terms of my medication, when I’m ready, I can gradually lower my doses with help from my GP. Hopefully, I will continue to go from strength to strength with my amazing little family by my side.

Thanks as always for taking the time to read my story.

Charlotte xxx

The Mystery Blogger Award

The Mystery Blogger Award

Thank you so much to Rhiann from http://brainlesionandme.com/ for nominating me for the Mystery Blogger Award!  I am thrilled to receive it from such a lovely lady and wonderful blogger. Her insights into the world of chronic illness help so many!

What is Mystery Blogger Award? 

“This is an award for amazing bloggers with indigenous posts.  Their blog not only captivates; it inspires and motivates.  They are one of the best out there, and they deserve every recognition they get.  This award is also for bloggers who find fun and inspiration in blogging and they do it with so much love and passion.” – Okoto Enigma

Rules

  • Thank whoever nominated you and include a link to their blog
  • Tell your readers 3 things about yourself
  • Nominate 10-20 bloggers you feel deserve the award
  • Answer the questions from the person who nominated you
  • Ask your nominees 5 questions of your choice with one weird or funny one
  • Notify your nominees by commenting on their blog

3 Things About Myself 

  1. I absolutely love music and I’m lucky enough to use it in my job as a primary school teacher. I like anything from Musicals to Rock and think it’s a great cure for anyone feeling down.
  2. I have an amazing little family (If I do say so myself). I have two wonderful boys who are quite literally, my World.
  3. I am about to make a HUGE move from England to Scotland in the hope of a fresh start. I’m scared, excited and can’t wait to see what the future holds for us.

My nominees for this award are; 

  1. https://livelifelightlysite.wordpress.com/

2) https://wordpress.com/read/blogs/142811223

3) https://mymultiplesclerosisandme.wordpress.com/

4) https://fightmsdaily.com/

5) https://skepticalmommyblog.com/

 

Answers to Questions from http://brainlesionandme.com/ are:

  1. If you were stuck on a deserted island but could have any 3 books with you, which books would you pick? Great question! I absolutely love to read. The feeling of being transported to another world is the best. The three books I would take are: The Book Thief, The Note and Me Before you.
  2. What are your favourite song lyrics? Why? My favourite song lyrics are from the new musical The Greatest Showman and the song is called ‘This is Me’ they are important to me because having suffered with a chronic illness, FND for the past 5 years following trauma experiences in my early adult hood, the lyrics sum up everything for me!
  3. What TV show are you currently binge-watching, or the last show you binge-watched? Would you recommend it? I am currently binge watching Gotham series 3 as I missed it. I love it, it’s a guilty pleasure.
  4. If you could travel back in time to any point in history, where you would choose to visit? I would travel back to the day before my youngest son was born to spend one more day with my lovely grandmother who sadly passed away the day after he was born. She was an amazing, strong lady and I really miss her.
  5. Imagine if you had to become a dog, which breed of dog would you be and why? I would be a staffordshire bull terrier because they are friendly and family orientated.

My questions for my nominees: 

  1. If you could travel to anywhere in the World, where would you go?
  2. What inspires you to write your Blog?
  3. Would you rather win the lottery and never work again or find your perfect job and earn enough to live a comfortable life?
  4. What’s your favourite colour and why?
  5. What’s your favourite food?
I look forward to hearing your answers!
Congratulations all!

Look through the eyes of gratitude.

I’ve made it through another very busy half term. Sadly, I have really over done it and I’m feeling the consequences. It’s frustrating but I understand that my body needs to show me when it’s time to stop.

Until this week, I had been experiencing good health. However, my illness hasn’t just simply disappeared and I am so grateful for all the wonderful ‘good’ days I have been lucky enough to have. I’m finally getting back to the old me but I have forgotten to ‘pace‘ myself and I’m now suffering for it.

When you live with a chronic illness like Functional Neurological Disorder, pacing is the key to functioning in your day to day life. It’s essential to become aware of your energy reserves. These are sometimes called’ spoons’. The spoon theory is recommended to many people with a range of chronic illnesses.

https://en.m.wikipedia.org/wiki/Spoon_theory

This theory links brilliantly with the pacing method.

https://www.google.co.uk/amp/s/www.psychologytoday.com/us/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend%3famp

So, it’s time for me to try and practise what I preach. I have a busy half term as we are heading to Scotland getting ready for our move in July. However, I must take each day as it comes and allow my brain and body time to shut down.

Unfortunately, I have started to suffer from awful night terrors and keep waking up my family with horrific screaming. I think this is my brain’s way of processing past trauma now I am dealing with it, instead of suppressing it. Hopefully it will pass and if not, I will see my doctor.

Thank you as always for taking the time to read my story. It’s so important to raise awareness of FND so that others don’t have to wait 4 years, like I did.

Charlotte xxx

Take time to be thankful.

It’s been a while since I have written a blog post. My reasons are simply that I have been very busy just living and being thankful for all that I have. I always thought that if I woke up without pain, I would be dead. However, I’m definitely alive, so very alive. I’m excited, enthused and simply bursting with life. I never thought that I’d feel like this again. I’m enjoying life more than ever. There are many exciting times lying ahead and our future is looking so bright.

Everything we have been through over the past five years has made us a strong family unit. Functional Neurological Disorder has been a part of me for so long and it has been a hard and gruelling journey. I have learnt about myself and my strength. This may not be the end of the journey but I’m now strong enough to deal with anything that crops up.

As my regular readers will know we are moving away at the end of July this year. I have mixed emotions as I’m sad to leave special people behind. However, this is our chance to start over and build a better future for our children. If we stay where we are, we will never have the chance to progress. I am thrilled to have found a new, exciting job and a fantastic school for the boys. I will miss my current school as it is so special but I plan to take the inspiration from it and channel it into my new role.

Over the past few years, I have been lucky enough to meet some wonderful people involved in supporting sufferers of FND. I will always do what I can to support these great charities and support groups. I think it’s so important for awareness to be spread as it can literally turn your life upside down.

I hope that my story can give others strength and belief that there can be light at the end of the tunnel. I am continuing to write my book. It is a hard story to tell but it is definitely one worth telling. If I can survive all that I have, then others can also get through their darkness too. I want to share in hope that it inspires others to fight, just as I have.

Thanks for taking the time to read my story.

Charlotte xxx

The black keys still make music …

As a parent, my main priority is to keep my children safe. Unfortunately, in the world we live in, this is becoming harder and harder. My boys are literally my heart beat. Without them, there would be no point. They’re the reason I fight each and every day to get better.

This week, both my children have had really tough times. What broke me is that there just wasn’t anything I could have done to avoid what happened. The truth of the matter is, I simply cannot be with them every hour of every day. They are becoming young men, I have to let them experience life through their own eyes.

Unfortunately, as I have had a hell of a lot of triggers over the past two weeks, I have had a lot of seizures. However, I understand that what I have been through with my loved ones this week, would cause even a well person to struggle. The seizures are what my brain and body have become conditioned to. They are the way my body chooses to react to the overwhelming emotional traumas I have experienced in the past. Although this is the case, I am becoming so much stronger. I am regaining some fitness and my symptoms are much less.

I choose not to be disappointed or ‘beat myself up’ but instead I choose to accept the blip for what it is. I love my children and I did everything I could to make things better for them as soon as I could.

My journey is a long one but it’s not impossible. After the awful things that have happened this week, I received some great news today. Our future will be bright as long as we’re together.

Thanks for taking the time to read my story.

Charlotte xxx

There can be miracles.

I recently had the opportunity to be a case study for the FND rehabilitation course I took part in. It felt great to be part of the education for other hospitals, helping to teach other medical professionals.

One of the questions that I was asked, really stood out. What advice would you give to those dealing with patients with FND? My answer was simple. Show them that you believe them and that you want to help them. Too often, I hear horror stories of the way fellow sufferers are treated. This is mainly due to a huge lack of knowledge and understanding of Functional Neurological Disorder.

The symptoms experienced vary but although they’re not caused by disease, they are very REAL. I also believe that in order for the treatment to be successful, the pt must believe that their diagnosis is correct.

When I was given the diagnosis of FND back in 2013, I had never heard of it. Neither had anyone else. Try to imagine how that feels. Your life is crumbling around you, you’ve lost control of your body. Then, they hit you with a illness you haven’t even heard of. You can understand why people think the doctors have got it wrong. We are a generation of Google Doctors. If you Google the symptoms of FND, you will find that they are pretty much the same as that of MS.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The only real difference in symptoms between MS and FND are the non epileptic seizures. However, the tremors can be similar to the NES. So, I think you can see why patients can question and disagree with their illness.

When I began my FND rehab, I was fully on board. I was sure that my diagnosis was correct. I believe that this is really important. If you think the doctors are wrong, the chances are, the treatment won’t work because you’re not ‘on board’. At the start of the course, the MDT (Multi disciplinary team) teach you about your condition. This is so important. Once I understood what was actually happening with my brain, everything, including my original decline in health, started to make sense.

If you have recently been diagnosed with FND, please know that you are not alone. There are many support groups and charities out there to help you. If you’re not getting the help you need, fight for it. I know you are probably exhausted beyond belief and feel like your life is over. Trust me, I’ve been there. However, if you delve deep into your mind, you will find that fight. Yes, there’s no cure but there’s treatment out there that can help. You should not be ‘dumped’ and left to suffer on your own. I am happy to point people in the right direction, if I can help, please ask.

It’s been 28 days since my last seizure which is the longest time ever. I am still experiencing other symptoms but out of all of them, the seizures are the worst. What is different now is that all my suppressed memories are at the forefront of my mind. My body isn’t having to release those emotions. I’m having to gradually process them. It’s shockingly difficult but I’m working through it. The days of hiding away from my trauma are gone. This is hard but I’m strong and I’ve got this. The support from my wonderful boys and Mr Right, helps me to get through each day. There can be miracles, when you believe.

I’m busy trying to find the end of the rainbow and thank you for following my journey.

Charlotte xxx

3 Day Quote Challenge- Day One

Thank you so much to Rhiann from brainlesionandme.com for nominating me to take part in this brilliant quote challenge!

Anyone who follows my blog will know how much I love a good, positive quote. Much like Rhiann, I find they work well as little ‘pick me ups’ when my chronic illness is getting the better of me!

The rules for this challenge are as follow:

  • Thank the person who nominated you
  • Post a quote for 3 consecutive days (1 quote for each day)
  • Share why this quote appeals to you
  • Nominate 3 different bloggers for each day

Here’s my quote for today:

This quote sums up things brilliantly and I love it.

I nominate:

1) Anne Doussan at stillmovingblog.com

2) Alec Nevalee at nevalee.wordpress.com

3) Kally at middleme.net

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