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fndandmecom

Living with Functional Neurological Disorder.

The gift of time.

Having time is a gift, a treasure. It gives you the opportunity to think, to reflect and to contemplate. I’ve had time to continue with my writing this week. Each chapter I write is like a release. A lifting of emotion. A respect to what has been. It’s difficult sometimes accepting and releasing the truth of what has occurred. On the other hand, this acceptance of the past, helps you to appreciate just how far you’ve come.

Spittal beach

I think of that young, innocent girl. My eldest son is the age that I was when it all began. So young, so naive and vulnerable. The perfect victim for a hunter looking for prey.

I wrote her a letter. The younger me. The girl who fell down so far that she thought she would never get out again. Here is some of that letter…

Dear younger me,

I’m sorry for everything you’re going through. I’m sorry you’re so alone. I’m sorry for the choices you make, you are under control of a darkness no one should see.

Don’t give up, there’s too much to lose. None of this is your fault. You haven’t done anything wrong. You are worth so much more than this and I promise that things will get better. It might not seem like it now but life is worth living. You will get away and will survive. You are stronger and braver than you realise. Your scars will show you this in years to come. As much as they try to destroy you, they will not succeed.

Eyemouth

The most ridiculous thing happened yesterday. I was watching a scary movie with my Mr Right. Next thing I knew, I had a huge seizure. Once I came round, I got to thinking what had caused it. It turns out that during the movie, due to some very good acting, I was triggered. A memory was set off, sending my brain into turmoil. Who knew that watching a scary film could be such a health hazard?!?! 🤪 The joys of FND!

Unfortunately, this lovely episode has left me a little worse for wear today but I have let myself rest and recover.

Beautiful Dunbar

I’m enjoying and appreciating my free time whilst I have it. I’m also making good progress on my book. Maybe one day, I’ll finish it!

Thank you for taking the time to read my story.

Charlotte xxx

Do what’s right for you ❤️

We are the owner of our happiness. It’s ultimately our own decisions that mould out the life we live. I’m a people pleaser, through and through. The trouble with this is that, all too often, we put the happiness of others before our own. It’s almost inevitable that at some point, living this way will have some kind of detrimental effect on your health.

Reading the many stories of my fellow chronic illness sufferers, there seems to be an ever emerging pattern of empathetic people pleasers. Now, by no means does this make us weak or pathetic. We are just simply too wired into helping others instead of ourselves. Unfortunately, living this way can evidently lead to mental and physical health issues.

So, how does one change the habits of a lifetime? Well, it certainly doesn’t happen overnight. It’s a tough and gradual process. A journey of new beginnings with the aim of personal contentment and happiness. It starts small but gradually builds. It’s finally stopping and listening to what your mind and body is telling you. It’s doing what is right for you and your children. No more explanations and definitely no more apologies!!

I’ve wasted far too much time worrying about other people and what they think of me. This is ludicrous as the way someone treats you is NOT a reflection of you but a reflection of them and the kind of person they are.

A huge part of what made me ill and caused me to develop functional neurological disorder (FND) was being made to feel worthless. As I’ve mentioned before this is a trigger and causes a trauma response. The only way I can fight against this is to stop caring so much about other’s opinions and just be me. I’m a good person and all I do is try my best. I deserve to be happy just like anyone else.

So, here’s to new beginnings and never ending journeys. Here’s to doing everything I can to stay well and be the best mum to my boys. Here’s to kicking FND’s arse the best way I can.

Thank you for taking the time to read my story.

Charlotte xxx

The woman I’m becoming.

It’s been an incredibly tough week. I think it’s because it’s been busy. I’ve worked all week as usual and we celebrated my son’s 18th birthday. He had a great day and I couldn’t be any more proud. On top of it all, I’ve been suffering terribly with insomnia. My brain and body are completely exhausted and are refusing to cooperate or communicate properly. After living with FND for 7 long years, I have learnt that the key to surviving this illness is to listen to your body.

I would say over the entire week I’ve had about 3 to 4 hours broken sleep a night. My GP is quite baffled as with the strength of my medication, I should be able to sleep very well. She’s running various tests and I have to go for a blood test next week.

Unfortunately, because of this issue my symptoms have been flaring. Thankfully, my seizures haven’t increased but my neuropathic pain, migraines and twitching are having a field day 🤨

I have grown to know and understand my body and brain very well over the years. Part of my PTSD (Post Traumatic Stress Disorder) is linked to being made to feel useless, crap and generally rubbish. When I’m made to feel this way, my brain is triggered and reacts as if I’m under attack. It recognises these feelings of self-doubt as danger and flies into its strange way of protection. It’s a pretty crap defence mechanism… ‘Quick we’re in danger, let’s have some pain and maybe do some twitching. Hey why not a seizure, that’s bound to keep us safe! ‘ You can probably spot the issue here! However, the brain works in mysterious ways and no matter how much I have learnt to ‘retrain‘ my brain, it will react this way when I experience these strong emotions.

Borrowed from Pinterest.

So, what’s a girl to do? I can’t change my current situation and a majority of us have been put into new and difficult situations because of the pandemic. All I can do is listen to my body. Tomorrow I will rest and recuperate. I will let my brain and body work through what it needs to and I will be ready to face a new week on Monday morning. God knows, I have been through much worse situations than this. I will remind myself that I am good enough. I will tell myself that I am doing the best I can. Most importantly, I will smile from ear to ear because my goodness, I have come so far. I am no longer defined by FND it is just a small part of the woman I’m becoming.

Thanks for taking the time to read my story.

Charlotte xxx

It’s times like these.

It’s times like these, we learn to live again. We had gotten so used to running around at a thousand miles an hour, day in and day out. It’s like we were living without appreciating, living without thinking. Then, without warning, our lives were thrown upside down and inside out. What we had come to know as ‘life’ was completely interrupted. We have been forced to stop and start again in a whole new existence, a whole new world.

Borrowed from Pinterest.

It’s been strange, scary and bizarre all rolled into one. Those workers who have always been under appreciated are now, rightly so, seen as the true heroes they are. All the things we have taken for granted, hugging our loved ones, travelling where we please, have been taken away to protect us. There’s a hope of a new ‘normal’. A new way of living where we appreciate each other and are thankful for the little things. We can’t see what lies ahead but I do hope that this moment of history will make us change for the better.

The trouble and the blessing with an invisible illness! Borrowed from Pinterest.

It’s so important to protect our mental health during this pandemic. My neurological disorder, FND, can be flared by anxiety. Over the past month, I have begun to develop some nasty new symptoms. My health was rapidly deteriorating so I knew I had to stop and evaluate what was going wrong. I started struggling to swallow, often choking even on my own spit. I began developing paralysis in my eyes and hands. At one point, my eyes clamped shut for about 45 minutes. I tried my best to stay calm as panicking makes things worse but if I’m honest, I was petrified. It was all heading in a dangerous direction but I was determined that FND would not win this time!

So, what does someone do when their mental health is causing their body to pack up? TALK.

Yes, it’s as simple as that. I talked. I shared my fears with my fellow sufferers. Who, I have to say, were absolutely amazing. The kindness, caring and support I received when I reached out was immeasurable. Thank you ❤️

I shared my worries and my truth with my loved ones. Having to admit that I was deteriorating to my partner and boys was difficult. Of course, they knew what was happening and they were there to listen to and support me. Thank you ❤️

Talking is such a simple thing but can seem like climbing a mountain when you’re always trying to be strong. If you think a friend or loved one might be struggling, please try and be that listening ear. Try to be that shoulder to cry on. It really can make such a huge difference with such a small gesture.

When I stopped and looked at my situation and finally admitted I was failing, everything started to improve. I’m still experiencing difficulties and symptoms but they’re now manageable. I’m no longer holding it all in and as a result, my body isn’t going into shut down mode.

Some pictures from my walks in the Borders.

Overall, I’m coping remarkably well considering all the changes to my work pattern and all the craziness going around. It reminds me of just how far I have come.

Thank you as always for taking the time to read my story. I hope that you and your loved ones stay safe and well. If you need someone to talk to, I’m always here.

Charlotte xxx

Be thankful.

We are living through a moment in history. An unprecedented time, fighting a war against a horrific virus. I have been touched and amazed by the amazing strength and kindness of humanity. The NHS workers on the front line and the countless other key workers keeping the country running together. Their indescribable selflessness, risking their lives and their families to save others. I’m honoured to do my small part working with children with complex needs and supporting the many families of the pupils I’m privileged enough to work with. It’s such a scary world we are living in. A majority of the young people I work with need their routines to feel safe. Their worlds have been turned upside down and it’s our job to make them feel safe and create a new ‘normal’.

Inevitably, my FND has flared. My brain is trying to figure out what is going on and is shutting down. My pain has increased, imagine a constant burning, like that from stinging nettles, I feel this all over from my head to my toes, pretty much all the time. I was averaging 2 to 3 seizures a week and this has risen to 1 to 2 a day. Thankfully, this is happening at night. My brain is processing the day’s anxiety and letting go at night. Luckily, I haven’t had any paralysis despite suffering with a lot of pain in my hip due to bursitis. Normally, this would cause my legs to shut down. I know in the grand scheme of things that my illness may not matter to most. However, the reality is that my FND doesn’t just disappear because we are going through a worldwide crisis. People with chronic illness are still suffering day in and day out on top of trying to get through this terrible time. I honestly believe that that’s nothing to be ashamed of. This is my reality and the reality of thousands of people living in the world right now.

We are all afraid, we are all anxious and that’s OK. Everyone will be trying to get through this in their own way. There is no right or wrong. If we all stay at home, stay safe and look after the NHS then eventually we will get through to the other side.

A picture I took back in February on a day out.

I am using this time to reflect on my life. Like many, I realise now what is really important. The ones keeping the country running should be appreciated and rewarded. I will hold those closest to me that little bit closer and I will never again take for granted all of those little things that I have before.

I’m lucky to be isolating with my Mr Right and my two amazing boys. My heart goes out to those going through this on their own. I’m always happy to talk to anyone if they are struggling. Sadly, there has been a rise in domestic violence during lock down. Those of you who read my blog regularly will know that I was in an extremely violent, physical and emotional abusive relationship for a long time. It has passed my mind, how horrific it would have been to have had to go into lock down back then. This has triggered some of my symptoms as I have been thinking a great deal about those stuck in these situations. Please, if you are reading this and you are suffering, let me help you. Reach out. I’m here.

Amongst all this madness, try to take time to be still. The world has been forced to stop and slow down. This isn’t the case for everyone, especially those on the front line. So, if you are lucky enough to be staying at home, think of all the good that’s around you. Listen to the birds singing, look at the signs of spring, the beauty of life and be thankful.

Borrowed from Pinterest.

Stay safe and keep well. Happy isolation Easter!

Thanks for taking the time to read my story.

Charlotte xxx

I think it’s brave.

It’s brave that you never give up ❤️

It’s a natural human instinct to fight or flee. Those of us living with a chronic illness, unfortunately, don’t have the option to run away. Despite this, everyday I am inspired by the amazing chronic illness warriors and the stories of their mind blowing strength to keep going no matter what they have thrown their way.

You see, it’s hard for others to understand. It’s not from lack of trying or caring but unless you live this life it is actually impossible to comprehend. What you can’t see, your brain will struggle to accept.

I was inspired to write today after reading a fellow blogger’s post. She is such an amazing, eloquent writer and manages each and every time to ‘hit the nail on the head’. Rhiann, who can be found at serene butterfly on WordPress has helped me so much. She explains things so perfectly and I’m sure my other fellow FND sufferers would agree. Thank you Rhiann, I hope you don’t mind the mention!

I can be my own worst enemy. I know I need to rest yet I avoid it. ALL THE TIME! I know I can drive my friends and family crazy, constantly pushing myself. However, as much as I would like to, I can’t stop. If I stop then I have time to think. My mind tries its upmost to go searching for memories I try so hard to ignore. I know that I have to deal with things and believe me, I ‘deal’ with things pretty much everyday but if I keep myself busy then I can cope.

I am happy, so happy and enjoying my life. Yes we have challenges but as a family unit we are strong.

I just love my job at the moment (thanks to my lovely friend for having a baby 😂) . I’m learning so much and enjoy working with the young people that I’m privileged enough to support. I am also lucky enough to be working as a carer for my friend’s fantastic son. He’s like a ray of sunshine and I just admire him and his mum. Everything in my life at the moment is just brilliant so it’s so frustrating that my mental health is the way it is. It makes me feel so dramatic but much like when I first started getting symptoms of FND, my brain decides when it’s time to start processing and sadly, it’s normally best when everything else is good and strong!

I have started the first steps to dealing with my trauma and already feel like I’m making some progress helping my son. It’s a very long road ahead and it’s going to be, for lack of a better word, shit… Yes, I did just swear 😂🤭 But do you know what, I’m ready and no matter what, I will be there for my boys.

Thanks as always for taking the time to read my story. I hope those I mentioned don’t mind but if they do, please let me know and I can edit 🙂

Charlotte xxx

Make it a good story.

It’s a true saying that you can’t change the past. It happened and can’t be changed. That’s a hard thing to accept sometimes. I wish I could wave a magic wand and change so many things. Just like a shattered piece of glass, you can begin to place together the tiny pieces but no matter how hard you try, that piece of glass will never be the same again.

Why I am who I am.

Trauma can be compared to shattered glass in the way that it leaves a change. A permanent, imprinted mark on your brain. Sure, you can work through the ‘damage’ it has left and learn to accept it but no matter how hard you try, that change is there forever. When you least expect it, it can turn up because the truth is, it’s never been away. It sits there waiting for it’s signal or trigger to rear it’s ugly head once again.

The only real change is knowing how to face it. When I see the effect it can have on my child even without them realising it, that’s when it really hurts. How can it be causing them difficulties when they have no way of remembering? I would rather I be sent to hell and back than see them struggle in any way. I will not accept this. They only deserve to be happy and I will do everything in my power to make sure that is what will happen.

My physical health has been pretty good considering how busy I have been in the past few weeks. I know I have been over doing it so accept that I’ve had a few bad turns but I’m doing really well all things aside.

I have some things that I need to work through at the moment. I often try to avoid ‘dealing with the past’ due to the fear of triggering my FND symptoms however, I feel that I’m at a point with my mental health where I need to face things. Unfortunately, as much as I would like to, I can’t avoid the past forever. If I’m going to be strong enough to help my son through his difficulties then I have to be the strongest I have ever been!

The time has come to truly face my demons head on and full throttle. The difference is, this time, I’m ready.

Thanks for taking the time to read my story.

Charlotte xxx

Practically imperfect in every way.

It’s that time of the year when everyone starts with the ‘New year, new me’ malarkey. This new year, I have decided to go against the mold because to be honest, I’m happier now, within myself, than I have ever been. I’m not sure if it’s an age thing or just a realisation that, I am, now more than ever, perfectly happy with ‘me’. Don’t get me wrong, I’m not in anyway suggesting I’m perfect! I’m far from it but that’s my point. To steal a famous saying with a twist, ‘I’m practically imperfect in every way’ and my goodness it feels good.

So, I’m setting my readers a challenge. Rather than looking for a resolution or trying to change yourself this new year, write a list. A list of all the things you have achieved this year, however big or small and be immensely proud of every single thing. Each of these ‘things’ a celebration of your life and evidence of you living and making the most of the time you have.

Next month will be my two year anniversary of my rehabilitation treatment at the National hospital for integrated medicine in London. It was a life changing experience for me. I had the opportunity to learn more about and understand Functional Neurological Disorder. As a result, I have learnt to manage my symptoms and have the chance to live a relatively normal life again. I will always be grateful for the help I received.

It’s amazing to see all the hard work of the various charities supporting those with FND come to light. It’s their tireless efforts that are making such a huge difference to the treatment and support available.

When I was diagnosed in 2013, there was such little awareness of this life changing illness. Now, as we enter into a new decade, 2020, things are so different. FND Hope have their first patron of the charity, no other than, Lorraine Kelly! What an amazing achievement for the charity. FND Action have been continuously raising money and awareness. The work you all do is absolutely amazing. The support I have received from fellow warriors in my dark days is priceless.

Thank you, thank you, thank you ❤️

My life will never be the same again. I know that I will always have FND. However, as we leave one year and start another, I am so amazingly happy. I wouldn’t change a thing. My scars, inside and out, are proof that I am strong and that I have survived things that no one should have to go through. That’s what we do. We survive, we live and we thrive.

I would like to wish you all a happy new year and wish every one of you blissful happiness for the future.

Thanks for taking the time to read my story.

Much love,

Charlotte xxx ❤️

Too many reasons to fight.

I could give up on days like today. I could admit defeat and bow down gracefully but I won’t. In fact I never will. Why do I fight? How do I keep going? The simple answer is that I just have too many reasons to fight. All of these reasons, somehow, give me strength even in the lowest of times. So, no matter what this dreadful illness has to throw my way, I will continue to stick a proverbial ‘two fingers’ right back and keep on going.

I won’t lie on days like today it is of course tempting to give in. Sometimes just the pure exhaustion smothers me from head to toe. It’s easy to let it consume me. Then, I look around me. Everything I have in my life, my boys, Mr Right, my family and friends, my lovely little house, I have worked so hard for. I will not give it all up for anything especially for FND!

These past two weeks have been quite a whirlwind. I have just started my new job and I’m excited to meet my new young people this week. I have received reports for both the boys and my goodness, did they make me burst with pride! On top of that I attended my eldest son’s final parent’s evening. I had to stop myself from crying after all the wonderful things they had to say about him. He also passed his driving test on Tuesday. Please excuse me whilst I bore you with my proud mum moments 😂

However, all of these things make it so clear that I have too much going for me to ever stop. My boys deserve the world and need me to be the best mum I can be and that’s what I will always strive to be.

I know that I’m lucky to find the strength within myself to keep going. It’s not easy and it has taken a VERY long time to get to this point. I hope my fellow chronic illness warriors will also find their own reasons to search and fight for a way to be stronger than they ever thought they could be.

Today may be a complete write off but considering I have been battling a virus and have been working my butt off, one bad day is okay. I will dust myself off and start again tomorrow.

Thanks for taking the time to read my story.

Charlotte xxx

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