Living with Functional Neurological Disorder.



Back on track #voices4fnd

The past few weeks have been rough but I’m thrilled to say that I’m back on track. The thing is my health has been crap but it has still been so much better than it was before my rehabilitation course. I am stopping most of my seizures and the ones I can’t are much less violent.

I have refocused myself by using the tools I have been given. I’m exercising again and have even been for a few runs, short ones, but I’m still thrilled. I have been using my CBT to challenge my negative thoughts and trying to pace myself. Unfortunately, it’s inevitable that I will over do it with my line of work. Although, I’m only contracted to work 2 and a half days, in reality I work 5. I have to mark books and plan in my own time. It’s frustrating because I love my job but it really gets in the way of me getting better!

This Sunday is a HUGE day for Functional Neurological Disorder. We are holding a huge awareness raising day. All the charities and support groups including Friends in NEAD are making videos, 7 minutes or less, using the hash tag #voices4fnd . The idea is to get people talking about this very misunderstood disorder. There’s so much stigma around it and it’s about time people are educated about it! Here’s my video:

I was extremely lucky to get the help I needed at the Royal Hospital for integrated medicine back in January. The multi disciplinary team made up of neurologists, neuro psychologists, neuro physiotherapists and occupational therapists educated me on my illness. On top of that, they came together to help me begin my healing process. I know that this treatment might not work for everyone but it really is worth a shot! I spoke to one of the medical professionals today and she has invited me to be a case study as part of a conference to educate others. The conference will have attendants from all around the country. The purpose is to educate these other teams on how to treat patients with Functional Neurological symptoms. How amazing is that?!? They’re educating people from around the country to stop the stigma and get people the help they need. I’m honoured to be a part of it.

I have come across some people that feel only a privileged few get the help they need, this is so far from the truth. I have fought just like everyone else. I waited 5 years. 5 long, awful years. I got the help because I didn’t give up. I had too much to fight for. You can do the same.

The rehabilitation only works if you fully believe your diagnosis is correct. I did, it was hard for me to accept but once I did, it all started making sense.

So, I know I’m not ‘fixed’ YET but I will be and I will make it my life’s work to help as many people as I can to get the help they need and deserve. I’m back on track and I refuse to be derailed any more!

Please help me to raise awareness on Sunday 25th March 2018 by liking and sharing anything with the hash tag #voices4fnd.

Thanks so much to those that take the time to read my story. It’s you that help me on this journey in improving understanding of FND.

Charlotte xxx


Clearing my head.

I’m embarrassed to say that I have been really struggling this week. I have been totally losing the battle with my health. I hate that I’m losing my strength and embarrassed because I’m more than aware that there are many others suffering so much more than me. I’ve been completely over doing things with work and at home. I know this but to be honest, I don’t have any other choice.

I have so much to be grateful for but yet I keep bumping back in to my ‘black dog’. The thing is, I just can’t seem to break away. It’s like a dark cloud that hangs over me and as much as I try to look for the sunshine, I just can’t see it. My seizures have worsened and my pain has increased. I’m normally so proactive but I’m finding it difficult to brush things off. Normally, if someone annoys me, I can just smile through it. However, at the moment, I just can’t. I find work so hard at the moment, my concentration is pathetic and I’m constantly fighting my own body. I think I just need to STOP. Shut down and close all the doors. Focus on what really matters. If I didn’t have my boys, I really think I would just give up. It’s because of them that I will fight this.

This blip is taking longer to flick away but I’m working on it. After all, I know that I will get better. I’m stronger than this and I will win this battle! Living with FND is hard but I truly believe that there will come a time when this illness will leave me. Until then, I will just keep trying my best to live rather than just survive.

We have an exciting new life ahead. It might be a complete disaster but it could be the best decision we ever make. You never know unless you try. I’m done with the what ifs, it’s time to try the why nots! It’s scary and daunting but I know that as long as we stick together we will be okay. I am going to miss a lot of people but I have to try this change to progress. We’re never going to move forward if we stay in our current situation. We’re done with the struggle, we want to thrive and this change will hopefully give us that opportunity!

My tics are really quite funny at the moment. Last night, I kept shouting ‘Silly sausage’ 😂 I can laugh at this as it’s just a new way of my brain fixing it’s broken parts. If it was just the tics, I would be quite happy but it’s the seizures and pain that I really wish would sod off!

When I started writing this blog, I wanted to raise awareness of living with Functional Neurological Disorder. When I was diagnosed in 2013, I had never heard of it, neither had anyone else that I knew. It’s amazing how much that has changed thanks to the tireless work of the various charities linked to this disorder. The 25th March is FND Awareness day in the UK. We are going to be sharing videos all over the Internet in the campaign: #voicesforFND . So please keep a look out and share what you can!

I will always write as honestly as possible. I see myself as a mostly positive person, however, the reality is that even the most positive of people will have darker and harder days. What’s important is to talk about how you feel and that way you can work with those around you to get better.

I will continue with my work from my rehabilitation and use my ‘happy tips’ and hope to see the sunshine again very soon.

Thanks for taking the time to read my story.

Charlotte xxx

Charlotte’s little happy tips!

What a difference a week makes! Things are finally looking up for my little family. It’s still been tough as one of my close family members has been in hospital. Also, we had some very important test results for my youngest son. I have had quite a few seizures but that’s okay, I think anyone would suffer with all the stress I’ve been through. The thing is, it’s been hard but we’ve got through it. We always do. The challenges I’ve had in my past, result in me having strength even in the most difficult situations. We got through it and everything is finally on the up. My son is going to be okay and so is my sister. We worked together and pulled through.

Living with a chronic illness can change a person. Having constant pain and fatigue can really drag you down. As I mentioned in my previous post, I have started to feel quite depressed. So, I’ve spent the week being my own therapist and compiling a list of things I can do to send that ‘black dog’ away!

This list is just some ideas people can try out if they suffer with a chronic illness and are not feeling their best. This is Charlotte’s little happy tips 🙂

1) Turn the music up- I believe music can be a great healer. It channels into your emotions and can provoke tears, laughter and memories. When I feel low, I put on some of my favourite music and sing my heart out. It can be any music you like, depending on my mood, I can go from Les Mis to Oasis in a matter of minutes. Basically, whatever ‘floats your boat’. I love music and would thoroughly recommend adding it to your daily routine!

2) Weigh up the pros and cons- In CBT (Cognitive Behaviour Therapy) I was taught to recognise my negative thoughts. You write down the thought you are having, the ‘Hot thought’. Then you make a chart. Write down evidence that supports the thought and evidence that does not. Then by looking at the evidence you can work out a ‘balanced view’. This helps me to think more rationally and helps me to get rid of irrational negative thinking.

3) Positive Data Log- Some days we are so busy that we become lost in a ball of anxiety and stress. Having FND, working and being a mum can make for a pretty hectic lifestyle. When you’re having a difficult time and everything seems all doom and gloom, you can easily become focused on the negative. The purpose of the Positive Data Log is to stop and reflect on your day and look for the good things that have happened. You’d be surprised, even on the most awful days, there is always something positive that happens. I find by focusing on the positive, it takes away some of the feelings of defeat.

4) Exercise- Yes, I hear your sarcastic laugh! However, I honestly can say that it really does lift your spirits. I’m not telling you to go and run a marathon, I know that living with FND and other chronic illnesses can really limit your fitness. However, if you can manage some light exercise, even for 5 or 10 minutes a day, you will feel the benefits. You see, it’s all to do with those endorphins. They’re like happy hormones and when you exercise, they have a little party and it’s fab.

I hope you find my list useful. Once again, I’m NOT an expert or a doctor but these little tips have helped me. If I can help just a few others, then that makes me happy! That’s what it’s all about!

Thanks for taking the time to read my story.

Charlotte xxx

The black dog.

This has been an extremely challenging week. I don’t know exactly why but for the first time, I was introduced to my very own ‘black dog’. By this I mean the darkness of depression. I felt overwhelmed, suffocated and lost. I think this has been caused by a build up of a number of things. What I find so very upsetting is an onslaught of FND symptoms as a result of my mental decline.

I left my FND rehabilitation feeling so great and full of life yet since then everything seems to have deteriorated. I have been trying so hard to be my own therapist and I think I will get back on track. I am, after all, only human. Even the strongest of people can struggle when things constantly go wrong. The saddest part of it all is I’m not brave enough to talk honestly to my family and friends. I just put on my smile and keep going.

Please don’t get me wrong, this is by no means a cry for help. This is simply a blip. I am strong and I will get through this but I guess I just want people to see, just like everyone else, I can break. Things get too much and whilst trying to piece my life back together, I will most definitely meet these hard times. I think the difference now is that I’m actually recognising and understanding the emotions I’m feeling. I am so embarrassed to admit this but I think in the past I have seen depression as a weakness. I know it’s NOT in anyway shape or form. However, I think I had become so used to living two separate lives. One that I would hide and the other would be the one you would see. I didn’t know I was depressed or anxious or anything really. It’s a lot more common then I realised and quite normal to experience at some point in your life.

I have so much to be grateful for and I am blessed to have my loved ones around me. After everything I have experienced so far in this strange, wonderful thing we call life, I know that I will get through this blip.

This week coming, we will finally get answers about my youngest son’s health. This has been going on since the summer and I am looking forward to getting him sorted and well again. Also, my feet are getting better so I can begin exercising again. My seizures will lessen if I focus on pacing myself again instead of trying to do everything. Essentially, what I’m trying to say is that things will just get better. No doubt there will be many more blips on the way but that’s okay because it’s all part of this healing process.

Hope everyone is enjoying the snow and managing to stay safe and warm!

Thanks for taking the time to read my story.

Charlotte xxx

The journey begins …

On Wednesday, for the first time in 5 years, I woke up without any pain. It was an exhilarating feeling but at the same time it was alien. I have always said since being diagnosed with FND that if I woke up and felt no pain, I would think I was dead. I know this sounds extremely dramatic but I have grown so used to it, that I’d actually forgotten what it feels like to not be in pain. My body felt normal, invigorated yet I felt so strange.

Living with a chronic illness changes you. Life becomes a bit of a blur. You try to live but really you’re just surviving. When I woke on Wednesday morning, I felt for the first time in such a long time that perhaps, I can start to live again.

Sadly, it only lasted for a day. My brain decided to remind me that it’s not finished processing just yet. I have now developed tics over the past week. I can only describe them as Tourettes type tics, it’s an uncontrollable urge to make loud noises. I can’t help but laugh but at the same time, I’m quite worried. So far, it’s only happening in the evenings and apparently during sleep. I hope it doesn’t develop any further. On the plus side, I have had only one seizure in the past seven days. This was brought on by pain as I have been suffering with two sprained ankles. It’s been quite a nightmare but thank goodness, they’re finally improving. Normally, I would have had many more seizures so it shows me just how far I’ve come.

I am continuing to be my own ‘therapist’. I have a lot to work through. You can’t fix a lifetime of problems in just a few weeks but I’m constantly making progress. I have been using the CBT to work through my negative thoughts.

My poor boy is still suffering health wise and I’m trying to stay positive but I seem to always blame myself. The CBT helps me to challenge negative thoughts by balancing the argument inside my head. It’s basically writing down the things that support my negative point of view and things that don’t. It helps you to come to a conclusion and think in more of a rational way. It’s still a work in progress but it helps a bit. I’m keeping focused and looking at all the good things that are happening instead of pining on the bad.

I will say this, I’m not broken or damaged anymore. I am on a journey of healing and I hope that my story gives others the strength to begin theirs.

Thanks for taking the time to read my story.

Charlotte xxx

A change is ‘aFOOT’

I have had a very productive week and can now reveal that I’m moving to Scotland this summer! I have spent the week looking at jobs, houses and schools for my boys. It’s been exhausting but I am pleased to say that my health has been okay despite having a sprained foot. I even got a chance to raise awareness of FND and N.E.A.D at the local hospital! (Every cloud has a silver lining)

It’s a huge decision to make this move for my little family but it’s a real chance for us to progress. I have been renting privately for 18 years now and I want to get on the property ladder. Unfortunately, that’s pretty much impossible for us in our current situation. Of course, it’s a worry in terms of managing my health but I am planning on getting in contact with a specialist in Edinburgh.

Despite being in a lot of pain with a sprained foot, I have only had one seizure and three lots of paralysis which is fantastic. I have managed to stop several seizures using distraction techniques and even went in to a large supermarket TWICE with no collapses. I was making great progress with my fitness but unfortunately, I sustained the injury so I am just walking until it is healed.

I am feeling much more positive since completing my FND rehabilitation. I have the opportunity to reflect on my negative thoughts that enables me to think in a much more rational way. I want to try and help others and if anyone reading this has any questions, I am more than happy to help. Of course, I’m not a medical professional and what works for me, may not work for everyone. However, I honestly believe if you have determination and are willing to go through a lot of hardship, you too could have some improvement.

Below are some distraction techniques I have started to use:

1) Choose a number between 100 and 900, then chose a number to count backwards in. Try to chose tricky numbers so you really have to concentrate. Even better, get someone else to give you the numbers.

2) Choose a colour or get someone to give you a colour and find 5-10 objects that colour.

3) Try thinking of a subject, i.e. animals, rock bands, anything really. Then think of something from that subject for each letter of the alphabet. So just say the subject is animals, start at ‘A’ Ape, then ‘B’ Bear and keep going till you have fully distracted yourself.

The reason I was told that these work is because FND and NEAD are caused by your brain sending incorrect signals. If you try to distract your brain rather than concentrate on your symptoms, it can prevent them from happening. It doesn’t always work. I am lucky that 80% of my seizures give me warning signs. I become spaced out or I get tingling in my face and arms. As soon as I become aware of these symptoms, I begin my distraction and around 7 out of 10 times it works!

I’m back to work and back to reality on Monday and I’m looking forward to implementing all that I have been taught in occupational therapy. Hopefully, I will be able to manage my fatigue better and won’t find work so difficult!

Thanks for taking the time to read my story.

Charlotte xxx

New habits, new life.

The awful things that have hurt you in the past can cause you to survive rather than live. This survival technique is a human way of getting through it all.

Once you are taught or once you have learned how to leave the past behind you, you can learn to LIVE again xxx

Challenges and opportunities.

Life is full of challenges and opportunities. This week has been terribly hard and normally, with all the stress, I would have been extremely ill. The difference is that I now have ways to control my symptoms. I haven’t been feeling great and my pain has been quite strong but I haven’t had any seizures. I now have the tools to be my own ‘therapist’ and my lovely Uncle A to help me think rationally.

As most parents will understand, when your child is ill, you tend to blame yourself. I tend to ‘beat myself up’ mentally which leads to an increase in my symptoms. This is completely unhelpful and makes everything so much worse. I need to be strong for my children and that’s what I will be!

I have finally started to write. It’s something I have always wanted to do and despite being really busy, I’m making time for me. Even if it’s just 10 minutes a day, I’m taking moments to reflect and write down my thoughts. Who knows, one day, I might have my first book published. It’s good and healthy to aim high, my writing might not be good enough but I’m enjoying it nonetheless.

All of this new adventure has been sparked from my rehabilitation course. I spent time with my occupational therapist writing out my day to day timetable. It’s really quite shocking how much I do in a day and if you were to write out your own day, I’m sure you’ll find the same! The only thing that was missing was time for me. There’s no where to fit it, I bet that’s what you’re thinking but you would be surprised. It doesn’t have to be long, like I said it might only be 10 minutes. However, it’s so important to look after yourself. Even more so, if you’re a parent!

Those of you who are regular readers will know that I am just at the start of my healing journey. I still have a long way to go but even at this point, I can see how implementing what I have been taught is going to be so life changing.

Perhaps after this, you could try to plan in a bit of me time. I hope you see the benefits as much as I have.

Thanks for taking the time to read my story.

Charlotte xxx

Working together for a better tomorrow!

I am very pleased to announce that I have been invited to join the team at Friends in N.E.A.D. The team have very kindly offered to share my blog on their website. This is fantastic as it focuses on my main reason for starting my blog- to raise awareness of Functional Neurological Disorder (FND) and Non Epileptic Attack Disorder (N.E.A.D)

If you are new to my blog, I would like to introduce myself. I’m Charlotte, 35 from Hertfordshire, England. I was diagnosed with FND and NEAD in August 2013. I would like to give you a bit of a background to my story.

In May 2013, I was in a great place in my life. I was in a safe and happy relationship. My children were doing well and I had just started working at a new school as a full time primary school teacher.

It all started over the May bank holiday weekend. I had woken up with a nasty migraine and a slight twitch in my eye. When I arrived at my parent’s house, I felt quite poorly so I went to lay down. When I got up, I headed downstairs and suddenly the right side of my face dropped. I looked like and felt like I was having a stroke. I was blue lighted to hospital where they ran tests including an MRI. All the tests came back normal and they decided it was Bells Palsy. After a while, I felt better and went home.

A few weeks later, my symptoms worsened. I started to have what seemed like epileptic seizures. I was referred to the National Neurological Hospital in Queens Square, London.

After months of tests and terrible illness, I was finally diagnosed with FND and NEAD. In some ways, this was a relief but in others, I was devastated. Experiencing such awful things and then being told that there is nothing physically wrong with your brain can make you feel like you have lost your mind. I know and understand now that it’s nothing like that at all.

When I was diagnosed I had never heard of this disorder and neither had anyone else! Hence why I decided to start writing my blog to raise awareness. Five years on, I’m thrilled to say that, thanks to the hard work of charities such as Friends in N.E.A.D, awareness is most certainly being raised! In November last year, there was a huge conference with medical professionals from all around the world, all about FND.

I am lucky enough to have had the opportunity to take part in a five week rehabilitation course which I finished yesterday. It has made such a huge difference. I now understand what is actually happening inside my brain and body when my seizures, pain and paralysis happen. As a result, my symptoms have improved. What I didn’t realise when I first fell ill is that my past had had an affect on my brain. I have in fact been suffering with PTSD. As a coping mechanism I had been holding in my hurt, shame and guilt and as a result my physical symptoms developed. I left the hospital yesterday, a stronger, happier me.

I am at the start of a difficult journey and I know that I am not ‘fixed’ but I know with my wonderful little family beside me, I can continue to heal. I now have the tools I need to manage my illness and I hope that I can help others too!

I’m excited to tell you about an upcoming event called:

#voices4FND on 25th March 2018.

This is an opportunity to help to raise awareness and I believe 4 or 5 different charities are getting involved. Raising awareness is so important because it helps to stop ignorance and allows for better understanding and treatment for those with the condition. I will write about this more in my next post.

Thanks for taking the time to read my story.

Charlotte xxx

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