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fndandmecom

Living with Functional Neurological Disorder.

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!
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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

International FND Awareness Day 2018. #LetstalkFND

This Friday is International Functional Neurological Disorder Awareness day.

Why are we raising awareness? It’s quite simple, despite this brain disorder being an extremely common neurological illness, so many still haven’t even heard of it. A lack of knowledge and understanding equals to stigma and a real lack of treatment. This has to stop. FND ruins lives and all too often, patients are diagnosed and sent packing. They’re left to try and live a normal life, dealing with a myriad of symptoms that are very debilitating. That’s why it’s so very important that we work together to stop the stigma and raise the understanding.

I started writing my blog, fndandmecom.wordpress.com ,

because when I was diagnosed in 2013, I was shocked to find out just how common it was and that no one had heard if it. I have been extremely lucky to find various charities and support groups who share my passion in raising awareness of FND. I am thrilled to work with the lovely people at Friends in NEAD. We are now lucky enough to be working alongside the charities, FND Hope UK and FND Action. Together, we aim to raise awareness and understanding of this complex chronic illness.

What is Functional Neurological Disorder?

Good question, the way it has been explained to me, when I attended an FND Rehabilitation in January, is that it’s a malfunction of the amygdala. Which is described as:
Definition and Function of the Amygdala. The amygdala is an almond-shaped section of nervous tissue located in the temporal (side) lobe of the brain. … They are thought to be a part of the limbic system within the brain, which is responsible for emotions, survival instincts, and memory.

I was told that the emotion’s centre of the brain stops functioning correctly. In my case, I now know that this is due to trauma. However, in some cases, patients have been known to develop this malfunction because of a physical injury and sometimes, unfortunately, there is no apparent reason and it just stops working correctly.

In my case, the trauma I had experienced as a young adult had caused my brain to become confused. I never dealt with or spoke about the terrible things that happened. As a result, when my brain felt that it could begin to process the trauma, my FND symptoms began. In the build up to my symptoms starting, there was a range of circumstances that I now know were ‘triggers‘. Triggers are moments that tell my brain that I’m under attack. Hence it goes into fight or flight mode and my symptoms jumo into action.

I am not medically trained and do not claim to be. This information is what I have been taught by medical professionals in my quest to understand my condition.

You can find more information about what FND is at the FND Hope or FND Action websites and also at http://www.neurosymptoms.org

What are the symptoms of FND?

Where do I start? This is again quite tricky as sufferers can have maybe one or two symptoms or all of them. Here’s a list of the symptoms I have experienced over the past 5 years, please forgive me if I miss any out!

1) N.E.A.D- Non Epileptic Attack Disorder. Also known as NES- Non Epileptic Seizures. These are full body convulsions caused by a confusion of signals in the brain. They are VERY REAL and extremely painful. Unfortunately, some uneducated medical staff believe that these are ‘fake’. They are most definitely NOT. You have no control over them and unlike epileptic seizures, most people tend to be awake but unable to respond.

2) Paralysis. I am lucky in the fact that the paralysis I experience is only temporary but some patients, sadly, don’t regain movement. Personally, my paralysis can last anything up to a few hours. Sometimes, it’s just my legs. Other times, it’s my whole body.

3) Chronic pain. This can be neuropathic or just generalised but it’s so relentless.

4) Chronic Fatigue. This isn’t just tiredness. This fatigue is sleeping for 12 hours but still feeling absolutely drained.

5) Memory problems. This again varies from person to person but can be very troublesome when standing in front of a class of 30 children!

6) Functional Tremor. This can be your hands, arms, legs or everything.

7) Body temperature. Sounds trivial but imagine feeling so cold that it feels as if ice is running through your veins. Then an hour later, sweating like a pig for no apparent reason. Trust me, it’s a pickle!

That’s just my experience of living with FND for the past 5 years. Sadly, there are many symptoms and lots of sufferers also have other conditions on top of all this.

I hope that you have found this information useful. Please help me by telling others, especially medical professionals about FND. It’s so important that everyone gets the help and support they need! It is working and help is out there. My readers will know how much my 5 week rehabilitation helped me but I had to wait 5 years to get that help. In that time, I had been surviving, not living. This can’t go on people need the opportunity to get treatment sooner.

Throughout the day tomorrow, Friday 13th April, we will be sharing vlogs, blogs and all sorts. Please help us by sharing, retweeting and using the hashtags: #LetstalkFND #NotFakingIt.

Thank you in advance you lovely lot 😙

Charlotte xxx

Listen to your heart, it knows …

I have been thoroughly enjoying the holidays. No alarm is bliss. I have been busy sorting things up in Scotland ahead of our move in July. I have even managed to get my assessments finished today. My health has been really good and I’m pleased to say that I haven’t had a seizure for 15 days! That’s the longest time since being diagnosed in 2013 which is just totally amazing.

I have met one of my 3 month goals that I set at the end of my FND rehab in January. I have started running again ☺ only short distances but last year, even if I tried to run for a few minutes, I would have a seizure or faint. I love it. Yes, I feel absolutely exhausted after running but this is followed by an amazing feeling of euphoria. The running makes me feel like me again. I’m a long way off but my 6 month goal is to run 3k. It’s not a huge distance but for me, after how ill I have been, it’s a massive achievement.

I am meeting with the Multi disciplinary team at the hospital next Friday. They’ve asked me to be a case study for the rehab programme which will be used to educate other professionals to tackle patients with Functional Neurological Disorder. I am honoured to be part of it. I was very lucky to have the opportunity and if they can teach other hospitals to help others with this condition, that’s fantastic.

Unfortunately, many patients diagnosed with FND are often left to get on with it. They are given the diagnosis and sent packing. This was true for me. I have pretty much been left to suffer on my own for the past 5 years. It’s only because of constant research and determination, I was finally given a treatment that worked. This rehabilitation can really make a difference and I’m so pleased that they’re teaching others to help people with FND.

This is the first time in a long time that I feel optimistic about the future. I am finally getting better and we are taking a big step to try and make our lives better. Exciting times lie ahead.

Thanks for taking the time to read my story.

Charlotte xxx

Recognising the triggers.

Life is a funny thing. Who knew that each and every thing that we experience leaves an imprint on our brains forever. This is becoming more and more apparent to me as I learn more and understand more about my neurological condition.

My health has been quite good this week and despite being fairly busy, I have managed to control my symptoms. Hence why I felt so ‘miffed’ when my symptoms started rushing in this afternoon. I felt so awful, my legs and arms froze and my nerve pain shot through me. Then, I realised why. Earlier in the day, I read something that triggered something within me. I hate that even after everything I’ve been through, I can let certain people’s petty behaviour have an effect on me. After analysing what I was experiencing, I realised that although this person is of no real relevance to me, they have in fact been triggering the same emotions that I felt all those years ago. They’re making me feel useless, not good enough just as I had been made to feel back then.

As a result of the trigger that I experienced, this set of my brain’s faulty emotions centre, telling me that I was under attack and as a consequence I became ill once again. As horrible as this all is, this ‘awakening’ I have experienced today is quite a triumph.

Over the past 5 years since being diagnosed with FND, I have often been angered and frustrated when my symptoms suddenly explode. The difference today is that I am finally understanding why they are occurring. This is quite a breakthrough and although I was initially caught of guard today perhaps, if I recognise the triggers earlier I will be able to use my tools to prevent them.

All of this knowledge and understanding would not have been possible if I hadn’t attended the Functional Neurological Symptoms rehabilitation. I really feel that by educating patients, you are essentially empowering them to be their own. healer. I am still a long way off from a cure but I now have the opportunity to manage my illness much better. All of this is giving me a better quality of life.

Thanks for taking the time to read my story. If you have any questions, I’m more than happy to help. I am by no means medically trained but I am always happy to share what helps me.

Charlotte xxx

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