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Living with Functional Neurological Disorder.

A smile can hide a thousand tears.

A smile can hide a thousand tears. It’s certainly not very ‘British’ to focus on the negative. It’s always about the ‘stiff upper lip’ and ‘keep calm and carry on’. The trouble is, this very British point of view can be extremely damaging.

I have been finding myself in a state of dismay. The more that I educate myself on PTSD, the more I disagree with my diagnosis. I know that I have most definitely experienced some awfully traumatic things but I fail to believe that I’m ‘damaged’ as a result. Also, I really don’t ‘fit’ into the common examples of someone suffering with PTSD. My research tends to describe sufferers as emotionally numb and unable to feel normal emotions. Those close to me know that I am the polar opposite of this.

Over the past week, I have been having non epileptic seizures in my sleep. This has always happened. However, the difference this week is that I’m not waking up. My poor Mr Right is being constantly woken up by my violent seizures whilst I lay there blissfully unaware. They’ve been that violent that I think I’ve actually given myself whiplash 😕 

I’m struggling with pain more than anything at the moment. My whole body feels like it’s on fire. It’s that painful that even my glasses hurt my face and my hair tie pulls against my scalp. It’s as if my body has become hypersensitive. This, unfortunately, is quite a common side effect of FND. What I fail to understand is how on earth do I stop this? I don’t expect it, I don’t choose it so how am I or how is my brain causing it?? 

I really wish I could wave a magic wand and make it all disappear. Sadly, I think I’m only just at the beginning of a very long journey. However, if there’s a way to get through this and get my life back, I will try absolutely anything.

It’s okay to cry when I’m on my own. The whole situation is, for want of a better word, crappy! On the outside, I will continue to smile and get through each day the best I can.

Thank you for taking the time to read my story.

Charlotte xxx

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Look for the good in each day.

People really do amaze me. Each and every day, people all over the world face so many hardships. Despite all this, we pull together and we fight. I guess that’s what seperates us as a species. Our inability to give up and our strength to inevitably keep going.

In the grand scheme of things, I feel that my life and my illness are not that important. However, just like so many others, this is my life and this is happening right now. 

I am currently reading ‘The body keeps the score’ by Dr Van Der Beek. It’s a hefty read but I am making my way through it and trying to learn/understand my diagnosis of PTSD. To a certain degree, I can see some relation to what the patients in the book have experienced. What I’m struggling with is understanding how this could have led to Functional Neurological Disorder. 

Believe me, I have tried and tried to overcome the symptoms that I experience. I really hate being ill, as mellow dramatic as it sounds, some days I feel like I just want to disappear. I’m angry and frustrated by what I feel. It’s not just me it destroys. I can’t work enough to properly support my family. I’m sure some people think I’m just a lazy attention seeker. It’s so far from the truth. Those who really know the real me, know how much this is destroying me. I WANT to work and I WANT more than anything to be well again!

I have just about made it through my first week back to work. After quite a disastrous summer, I’m trying my best to pace myself. I have to wait till October to start my psychotherapy and until January for the FND rehab. Until then, I will continue to try and learn about and understand what my body is going through. I will strive to look for the good in everyday. 

Thanks for taking the time to read my story. 

Charlotte xxx

A new journey.

On Friday, I finally attended my assessment for the FND clinic at The Royal Hospital for Intergrated Medicine linked to The National neurological hospital at Queens Square. The clinic is a multi disciplinary team of neuro psychologists, physiotherapists and occupational therapists. I was lucky enough to meet the head of the team. She is a specialist in Functional Neurological Disorder. 

It makes a real difference to speak to professionals who actually understand how FND works. We spent well over an hour discussing my life and how FND effects me everyday. We went right back to my childhood and looked at aspects of my personality. After that we looked at the causes of my PTSD. It was agreed that there’s a possibility that the trauma I experienced could have led to me developing my symptoms. 

Following our discussion, the doctor explained what they can offer me. They offer a 5 week rehabilitation course. This consists of treatment from all members of the team working together to help me deal with FND. I have to go to the hospital twice a week throughout the 5 weeks which is going to prove quite difficult in terms of organising the children. However, despite how hard this is going to be, I really feel that I need to give this a shot!

The doctor suggested reading a book called ‘The body keeps the score’, I have ordered it today. It basically discusses the brain as a processor and how trauma can attack the way the brain functions. 

I’m thrilled to say that my youngest son is finally starting to look and feel better. It’s likely that he had something like glandular fever and hopefully he is ‘out of the woods’. My eldest son had an amazing time in France with his friend’s family. I’m so pleased to have my family all together and plan on resting up and enjoying what’s left of the holidays. 

I start my psychotherapy this week which the neurologist at Queens Square said is a fantastic start. I have one hell of a journey ahead of me but I’m hoping this is all going to work towards a better life for me, Mr Right and my amazing boys!

Thanks for taking the time to read my story.

Charlotte xxx

Make the most of each moment.

I’m very lucky to be spending some quality time with my family this week. I love family time and can’t get enough of it. Unfortunately, my health isn’t great but at least I’m surrounded by people who care about me and love me.

I wait in anticipation for my appointment at the FND clinic next week at the National neurological hospital. It’s probably nothing worth getting excited about but I guess for someone like me, we always have a glimmer of hope. 

Sometimes, I just try to stand back and assess my situation. I live each and every day in pain. It’s constant and relentless but sadly I think I have actually become ‘used’ to it. I think that perhaps this is now my normal. Those who are close to me will hopefully see me as a kind and caring person, maybe even quite laid back. This is who I choose to be. I refuse to let this awful bloody illness turn me into a nasty, bitter person. I’m absolutely nothing special but I aim to be the best person I can be in my situation and the best mum for my wonderful  boys. 

When I arrived to visit my parents, I had a seizure within a couple of hours. Understandably, they were quite upset but for me these episodes are just part of my everyday now. The question is, should they be? Should I have to live this way? Let’s hope that eventually I won’t!

I’m hoping for more support from the FND clinic. Hopefully, they can show me ways to deal with this illness better so that each day doesn’t have to consist of constant suffering. 

I want to try my best to enjoy this special time and not let FND ruin it. So here’s hoping for more of the ‘good’ days and less of the ‘bad’.

Thanks for taking the time to read my story.

Charlotte xxx

Time to heal.

I’m taking some time to heal. Even the healthiest of people need to take some ‘down’ time. My FND symptoms have exploded due to having spent the past two weeks in and out of hospital with my youngest son. I’m hoping and praying that he is finally on the mend after being sick every night for 13 days in a row, last night he was sick free.

I’m thankful that my ‘mummy-power’ well and truly kicked in and that I have been able to mostly be there for my son. It gave the nurses on the night shift in the children’s ward an eye opening experience of Functional Neurological Disorder. I guess that’s one way to raise awareness 😂

Now that we are home and my son is hopefully on the road to recovery, I can give my body a chance to recover. My pain is through the roof and it feels as though my head might explode. I’m having numerous seizures without any warning /build up. However, this is all to be expected. What really matters is that my body didn’t let me down when I needed it most. My son needed his mum and I was able to be there for him.

I have received my first appointment for the FND clinic at the National Neurological hospital in Queens Square. I’m not quite sure what to expect yet but I have high hopes that they will be able to help me find ways to improve my life. 

I am continuing to work on my PTSD and gaining a better understanding of the reasons behind the way my body reacts to trauma. It’s all small steps but better small than not at all!

The summer holidays so far have been absolutely bloody awful. I’m hoping now that things will start to improve and my little family can finally enjoy a well deserved break together! 

Thanks for taking the time to read my story. 

Charlotte xxx

Things can only get better!

I often feel like I’m constantly living an episode of Eastenders. My life seems to fly from one drama to the next. Honestly, the things that can be thrown at my little family in just one week couldn’t be made up! I guess that all these challenges are a test of our strength but even so sometimes I do think that we may have been cursed.

Please don’t get me wrong, I am under no belief that our dramas are any harder than anyone else’s. I am fully aware of the hardship that we can all face at times! However, it really gets ridiculous when yet another problem crops up. 

We are just into our second week of the summer holidays and so far it’s been quite a ‘flop’. My FND symptoms have been all over the place. I’ve experienced a mixture of seizures, constant burning pain and temporary paralysis  (thrown in for good measure). Then to top it off, my youngest son had to be taken to hospital in the early hours of Tuesday night 😕 It turns out that he had a blockage in his bowel and they had to give him medication to get everything ‘flowing’ again. He was amazingly brave and I couldn’t be more proud of him. It was all just an awful experience! 

It may sound ridiculous but I actually get embarrassed sometimes. I’m embarrassed by all the drama. It can almost seem unbelievable, half the things that happen to us! It was only a month ago my oldest son was in the same hospital with suspected appendicitis. I guess what I’m trying to say is; enough is enough. When will our break come? When will things get better? We keep saying these things but it’s not getting better and we are definitely not getting a break. 

I don’t like to be negative and always try to look on the bright side but sometimes it’s almost impossible. I have to give myself a proverbial kick up the bum and I will. However, I have to have a bit of a moan from time to time. At the end of the day, I’m only human and whereas I am happy to take on whatever this crappy illness throws at me, it’s a whole different story when it comes to my children!

I watched a documentary earlier today about a girl of only 22 who has Motor Neuron Disease (MND). This is extremely young to get this life limiting illness. She was so strong and amazing despite being given only 3 years to live. She is determined to live as much as she can and is a real inspiration. This young lady also writes a blog. During the documentary, she said that writing her blog helps her to think through things and process her situation. I think she’s so right.

 Some may see this blog as quite self indulgent. In some way, it may be. At the same time, I write this blog in the hope that people can learn about the affect of living with a chronic illness like FND. When I was diagnosed in August 2013, I had no knowledge of the existence of Functional Neurological Disorder. Today, I hope that those that are kind enough to take the time to read my story have a better understanding and in turn are educating others. 

It can become incredibly lonely living with chronic illness. It’s hard for others to understand what each day can be like. That’s why I choose to be a voice. Not just a voice for me but a voice for others living with this every day. 

Here’s to hoping for better days for anyone reading this. As D:Ream once said, “Things can only get better!”.

Thanks for taking the time to read my story.

Charlotte xxx

Sit back. Marvel at your life.

Sometimes it’s the little things in life that mean the most. I am thrilled to say that for the first time in 4 years, I made it to the end of the school term! This may seem quite a minor achievement but for me it means so much. It means that although I’m not ‘better’, I’m getting ‘better’. I know that I haven’t beaten FND but I’m learning how to live with it and it’s not always winning! 

I have had a busy start to the holidays, getting bits done around the house and play dates for my youngest son. My older son went off on his travels to France on Tuesday. He is a very lucky boy and although 3 weeks is a long time, I’m thrilled that he has such a great opportunity! 

My health is not great but I am trying my best to pace myself. I’m still having regular seizures and paralysis. My body is trying to process everything that is being brought to the surface and I accept that. I have a long and hard journey ahead of me but I know it’s important to deal with my demons. 

I am still waiting to see my GP for blood test results but have been too busy to go. I have booked an appointment next week for that and to discuss other things. I have been experiencing problems with circulation on my feet and I’m not sure if this is related to my FND. Hopefully, I will be able to get some answers at my appointment!

So overall, things are positive for me and my little family. I’m ill but that’s okay. I know how to deal with my symptoms and just hope nothing else pops up to get me. Fellow sufferers of FND will know how uncertain each day can be but if something else crops up, I’ll be ready to take it on.

Thanks for taking the time to read my story.

Charlotte xxx

Standing on a line.

Sometimes I think to myself that I should just ‘bite the bullet’ and give up. Stop fighting and give in. That would definitely be the easy option. So, why don’t I? The reason I keep going is quite simply, I have too much to live for!

I refuse to accept that this is it, this is my life and that’s it. I am confident that there’s still so much more to come. I WILL beat this illness, I WILL get my life back. It’s not a case of ‘if’, it is a case of ‘when’.

Yesterday, I had another counselling session. These sessions are so ‘eye opening’ for me. Realising and understanding that what I have been through in the past is definitely not normal. It’s traumatic. I have been to hell and back and although I didn’t realise before, this trauma has caused my brain to shut down. I can now see how this damage could have led to Functional Neurological Disorder. 

When my symptoms first began I was in probably the best I had ever been. I was happy, stable and supported. Little did I know that my past would come back to haunt me in a way I could never imagine. My counsellor has helped me to see how this could have led to the development of FND.

My hope is that if I gradually try to ‘deal’ with this trauma perhaps this will aid my recovery. I know it won’t be an easy road. God knows I’m already experiencing repercussions of bringing all of this closer to the surface. However, I truly believe if I continue to leave these thoughts and feelings, I will never be able to recover. 

All I can say is ‘bring it on’. This journey is hard and unforgiving but I can’t and won’t give up. I have been referred to a specialist for treatment of trauma. I’m not sure if I will be eligible for it as my condition might not be ideal and it could make me more poorly. Fingers crossed, I can have it and it helps.

Thanks for taking the time to read my story. 

Charlotte xxx

Hold On, Pain Ends

This week has been so hard. It’s what I would call a ‘failed’ week. I became so disheartened after doing so well the previous week despite the intense heat. I feel that perhaps this week has been a continuous repercussion.

My body and brain are distressed but somehow I have managed to function albeit for only the latter part of the week. I, once again, made the silly mistake of thinking that I just might be getting better. Only to be severely punished for trying to live a ‘normal’ life. I try to forget that I am ill, I don’t want FND to win and try to convince myself that it won’t. However, this week my battle was in vain. 

I have suffered 3 lots of total body paralysis in the past two weeks. It’s been horrific to say the least but this has happened in bed at least. On Wednesday morning on the way to work my left arm lost all feeling and became limp. My lovely friend at work could tell I was in a bad way and insisted on me going home. Thank goodness I did. My arm stayed paralysed the whole day and I went on to have several non epileptic seizures throughout Wednesday and Thursday. I was in a bad way. The pain I have experienced has been indescribable. 

My neurologist is concerned about my circulation and sugar levels and therefore has run some blood tests and nerve related tests. There’s a chance my brain disorder is causing problems with my levels so they want to rule out any other problems. 

Once again, my amazing Auntie and Uncle have been there to help me out. Also, I have been shown such kindness and compassion from my work colleagues that I was able to pull myself out of the spiral of darkness I was falling into. I managed to teach yesterday morning and then attend my son’s sports day. This was truly a miracle. I know it sounds very dramatic but if you had seen the state I was in on Thursday evening, I think you may agree.

I am not where I want to be. It’s so frustrating having to constantly fight your own body. This isn’t what I had planned. My boys deserve so much more than this and it breaks me apart not being able to provide for them the way I should. 

Unfortunately, as much as I try to stay positive sometimes I have to just let myself feel this way. It can be so hard and so lonely and just incredibly exhausting living like this everyday. The one thing that FND can’t take away from me is hope.

That magic word, hope, keeps me strong and optimistic. I have so much to live for and know that one day this dark storm will pass and I will arise from the other side a stronger person. 

Thanks for taking the time to read my story. 

Charlotte xxx 

The picture used is not mine I borrowed it from the following:

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