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fndandmecom

Living with Functional Neurological Disorder.

Strength, learned lessons and pride.

Only a few people know my true story. One day, when the time is right, I will share my full, crazy and sometimes heart breaking journey in the form of a book- hey a girl can dream 😁

Today, I attended an open day at a university for my eldest son. If you would have told me 16 years ago that this was going to happen, I would never have believed you.

The thing is, many of us have tales to tell of rising from adversity. Fighting our own personal battles. This got me thinking that in reality, we all have it inside of us. It’s part of being human. We are strong when we have to be. Our experiences shape us into who we are meant to be.

I’m a true believer that we are in charge of our own destiny. Of course, we do not choose to make bad choices or to suffer. However, it’s what we decide to learn from our experiences that really make a difference. It’s by no means easy. Sometimes, it takes some of us longer to learn and we continue to repeat that mistake. When we finally get to the point of learning, we adapt and move on to our next challenge.

I’m sure you are thinking, please get to the point I’m trying to make πŸ˜‚ so what I’m trying to say is that if you are stuck, if you can’t see a way out, please, please believe me that there is a way to get through whatever you are going through. You have to grasp on to any smidgen of hope you have inside of you.

When it’s time and I can share my truth, I hope you will recognise that if I can escape, if I can get to where I am now from where I have been, then we really are all capable of living our best lives no matter what we have been through.

I’m not perfect at all. I have many, many flaws but I’m totally fine with that. We don’t know everyone’s story. Please be kind. Treat others how you would like to be treated.

I’m proud of how far my little family have come. I was 19 years old when my first son was born. A real ‘statistic’. I was a child having a child. We grew up together and then I was blessed 4 years later with my youngest son. Despite, the awful things we have been through, we have risen and will continue to rise above and beyond our limits.

My children are literally my heartbeat. I am absolutely thrilled and grateful for what amazing young men they are becoming. Their resilience is awe inspiring. They are my fuel, my fire and my reason for never giving up.

It’s been a really tough few weeks. I’ve been pushing myself beyond my limits and my physical and mental health are suffering as a result. My symptoms have flared up and I have some big decisions to make. I know that whatever happens, I will have my family behind me.

I’m exhausted but still fighting. As I have said many times before, I have too much to fight for to give up now!

Sending well wishes, hugs and hope to anyone reading this now who needs reminding just how amazing and fantastic they really are.

Thanks for taking the time to read my story.

Charlotte xxx

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Surviving work with a chronic illness.

I have had another tough week with managing work and my FND. It has got me thinking about just how those of us living with chronic illness can hold down a full time job. It’s tricky and requires so many adjustments but somehow I am just about sailing through!

Here’s my ‘top tips’ for surviving work when living with FND.

1) Pacing – I mention this a lot but it really is so very important. It’s bloody hard too. If like me your job is a demanding one, it’s so easy to completely and utterly over do it. This has been a long, hard lesson but I know now that sometimes you just have to say no.

I have always been a hard worker, wanting to be the best I can be. However, if you keep pushing and don’t slow down, you will just crash. I still strive to be a good employee but when my body and brain start the warning signs (migraine, tremor, face twitching or drooping) I have to stop.

2) Accepting help– Again, if you are anything like me, this will be difficult. I have been with Mr Right for nearly 10 years now and before that I was a single mum with two young boys going to university full-time.

Despite the length we have been together, I still behave very much like a single person. I don’t like help, I don’t like charity, I get things done on my own. The trouble is that I simply can’t. I am definitely not Super Woman and due to Functional Neurological Disorder, I am still really quite poorly a lot of the time. If I am going to survive working all day, 5 days a week, I have to accept that I need some help.

CBT (Cognitive Behaviour Therapy) has really helped me with accepting help. I used to feel absolutely terrible and useless when I couldn’t do it all but CBT helped me to realise that it’s OK to admit when you need support.

3) Keeping to a routine – This is essential. Of course, it’s nice to live life freely and I definitely do that when I’m off work but to be able to get up every day and go to work, I must stick to the routine.

I have become so in tune with my routine that my whole morning is perfectly run. Thus stopping any stress from having to rush too much. I am not ashamed to admit that I go to bed at 9.30pm every week night. Of course, I don’t have a wild lifestyle but it works for me and ensures that I am getting enough sleep to be able to function a whole day at work.

Another part of this is taking my medication at regular intervals. Managing my meds is important as if I take them too late, I will struggle to get up in the morning.

4) Work/life balance – I appreciate how lucky I am to be working full time and living a somewhat normal life. However, there are days when I feel like death warmed up. My chronic pain can completely consume me and when I get home, I just want to curl up and disappear. It is OK to be this way some days but I have found that it’s so important to have some time with my family. I tend to plan my weekend so that I have my family time one day and the other is my recuperation day. A day of completely nothing. It is hard for me but it is all part of my survival and I know that unfortunately if I don’t take my ‘nothing’ day then my week of work will be so much harder.

There it is, my mini guide. This has taken a long time to get here. I spent the last 5 years before this one working part time and having to take time off.

If I’m completely honest, I don’t think I would be able to work as a full time class teacher as it is like having two jobs at once. I’m lucky as my current job is very full on but manageable. I am working with children on a one to one basis, travelling around. This has been a fantastic way for me to work as a teacher but in an adapted way.

I hope that this will help at least one person. My regular readers know that the purpose of my blog is to raise awareness of FND and to help others where I can. I’m always happy to answer any questions you may have.

I’m so exhausted now so I’m off to continue my rest day in front of the TV.

Thanks for taking the time to read my story.

Charlotte xxx

Smile because it happened.

Today marks the end of my summer holidays. I have achieved things this year that I have been unable to in a very long time. My health has gone from strength to strength despite a few blips along the way 😊

I am so very grateful to be quite ‘well’ again. I still get affected by my FND symptoms when I over do it but I’m now able to plan for this by booking in rest days before and after an exerting day.

Living with chronic illness and pain has changed my whole outlook on life. It has taught me to stop dwelling on the negatives and to focus on those little moments. It’s so easy to become completely and utterly consumed by your illness. You can quite easily lose hope. Even the strongest of people can get sucked in to a deep, dark depression.

I speak from experience. I have felt hopeless at times and wanted to give up. At points, my illness had become everything. I could no longer ‘see the light at the end of the tunnel’. What saved me was those little moments, the glimmers of hope. They were what kept me going. Knowing that somewhere inside me was the strength to beat my demons and to start my journey back to wellness.

I’m finally on that journey to wellness. I am learning every day. My body is surprising me with what it is now capable of. I had lost trust in my body and my brain. It felt like an internal battle against myself. I knew what I wanted to do but my body had given up and my brain had become confused.

Functional Neurological Disorder is believed to be a malfunction of the brain like a faulty hard drive on a computer. After the trauma I experienced (that’s a story for another time) my brains wiring was marked forever. It was described to me as my brain’s emotions centre, the amagdala, being confused as a result of the trauma and going in to ‘fight or flight’ mode as a way to protect me. Of course I knew nothing of this at the time and chose to carry on with life and not deal with all the things that happened. Hence, when I was actually in a ‘good place’ my brain decided it was time to deal with it all.

Now I understand my illness, I am able to manage it so much better. This has been an absolutely wonderful summer with my friends and family. I can now say with truth in my heart that I am looking forward to what the future holds.

If you are newly diagnosed with a chronic illness, know that one day, things can get better. It will be a long, hard journey. There will be times when you want to give up but just try to focus on those little, special moments. Please don’t give up hope. It’s the one thing that will keep you going.

Thanks for taking the time to read my story.

Charlotte xxx

A year can do a lot to a person.

Today marks our 1 year anniversary of moving to the Scottish Borders from Watford. I honestly can’t believe that it’s been a year already and my goodness what a year it has been!

I remember the night before so vividly. I was full of a mixture of emotions. I was excited, apprehensive and so very full of hope. We had no idea if we were making a tremendous mistake or whether things would really work out for us. We knew that if we stuck together as our strong family unit that whatever was to happen we were going to be okay.

It has been a difficult time for us but also a wonderful time. Having to leave the safety of our permanent jobs was scary. We had both worked at our places of employment a long time! Also, leaving behind our family and friends in Watford was incredibly difficult. It felt like we were taking a deep breath and diving into the abyss, into the unknown.

Another fear was not knowing how my health was going to cope and how well I would be treated by medical professionals in Scotland. Thankfully, I have an amazing GP who knew all about Functional Neurological Disorder. He has taken the time to read up more during the time I have known him and really shows compassion and understanding. I know just how lucky I am with this especially after reading some of the horror stories that happen to some fellow sufferers!

This year has been eye opening and quite an emotional roller coaster. I really had absolutely no idea how different things would be living here compared to Watford. The Borders are full of a real national love, full of tradition and seeped in history. Even the school systems are completely different. I love living here and I’m enjoying learning about each towns individual celebrations such as common ridings, Herring Queens and so much more. I never would have believed that living just 350 miles away would be completely different but it really is.

We have been extremely lucky to have made some lovely new friends here. The boys have both settled in brilliantly to their new school and have made some great friendships. I have met some really good people who have been so kind and supportive. I hope they know how much it’s appreciated!

Overall, I think we have made a good decision. Mr Right has a good permanent job as do I. My teaching career has taken a whole new, exciting direction. I am able to manage working full time due to nature of my role. It’s challenging but I love it and I’m learning constantly and look forward to what the future holds.

My health has been struggling a bit but I have been very busy. I am trying my best to pace myself but it is tricky when trying to squeeze in as much as possible before I return to work!

I will continue to use the spoon theory and aim to not run out of spoons!

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

I am excited to see what comes next for us. This has been the first chapter in our new book and what a chapter it has been. As I have said many times, I may never be free of FND but I am now living the life I was meant to live.

Thanks for taking the time to read my story.

Charlotte xxx

The memories we’ve made along the way…

I have just got back from a wonderful holiday with my family and I’m thrilled to say that other than on the journey home my FND symptoms didn’t get in the way!

I was scared as I didn’t know how my body was going to cope with the travelling and the change in temperature. Living with a chronic illness makes it difficult to know what can happen next. My brain functions differently and doesn’t always read messages in the right way. My senses are heightened and when I first got off the plane, my skin became extremely painful, tingling and burning. I did panic, I thought it was going to be a disaster but after an hour or so the pain subsided and I actually felt fine. I feel extremely blessed and ridiculously happy. We really did have the holiday of a lifetime so much so that we are already planning our next break away πŸ˜‚ I definitely need to work on my language skills first!!

One of the most awful times I have experienced happened in Spain. I have to admit that when we were booking our holiday earlier this year, it did cross my mind that going back there could be a huge trigger for my PTSD. I spoke with Mr Right about it and instead of him thinking I’m a complete loony, he listened and understood. He said that this was our opportunity to build new, amazing and happy memories. I knew that I could trust him, he seems to know me better than I know myself. I think he just gets it and understands that as much as I act like I don’t need anyone else, he is always there to fill in the cracks of my broken pieces. I am a strong woman but sometimes I need a little support even if it’s silent.

The support network I have been lucky enough to be surrounded by has been vital. My partner has stood with me through it all. My amazing, resilient boys, who are turning into great young men. My beautiful sister who has always lifted me up when I have been low and my parents who have helped me as much as they could. My wonderful Uncle A and Auntie K who sadly have chosen to break contact since we moved away. They went above and beyond for me and the boys. I have told them how much they mean to us. My lovely bestie who has worked so hard to understand and support me. All of my other wonderful friends and family. Thank you so much ❀️

Functional Neurological Disorder is still a very misunderstood condition. That’s why spreading awareness is so important. So many fellow sufferers are rejected by friends, family and professionals. Unfortunately, it’s a human instinct if people don’t understand something they push it away. The knowledge is constantly improving. I have been very lucky to have always been treated with respect and understanding. This should be the case for everyone. No one chooses to be ill and have their life turned upside down. If you know someone going through it, please support them and believe in them. They need you now more than ever.

I have finally began writing again, with all that has happened in the past year, I had fallen off the wagon. However, I am now back on it and I am loving it. I get so much from it and I hope one day to be brave enough to share my story with the world.

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

Charlotte xxx

You lost and I won!

I’m nearly there, I’m completely ecstatic that I have managed a whole school year working full time without having to take time off because of FND. Not only that but I have managed to survive a complete relocation, moving from England to Scotland. It is just mind blowing!

After being so ill for so long, I honestly thought that was my life over. However, here I am, living my best life. I am becoming me again but not the old version of me. I am becoming a stronger, wiser woman who is comfortable in my own skin. I will no longer be ashamed of my scars. I will wear them like a badge of honour. I will say, ‘Yes I have been hurt but I survived the deepest, darkest moments and I am here. You tried everything to destroy me but I came back fighting. You lost and I won.’

The trauma I have endured has tormented me for long enough now. My boys deserve the world and I am going to do everything to give it to them. We have worked so hard and dealt with things no family should have to. This is OUR time. We have earnt the right to be blissfully and ridiculously happy.

In a week’s time we are going on our first ever holiday in the sun. We have been truly blessed to have been taken on some wonderful holidays by my fantastic Uncle and Auntie and my amazing best friend in the UK. I will always be grateful for that. This is the first time I have been able to pay for a holiday for me and the boys. If we hadn’t have taken the leap to move away, we would still be paying ridiculous amounts of money on rent and be stuck between a rock and a hard place. We now have a mortgage that’s half the amount of rent and we can afford holidays. Financially it has been a great decision. The downside is of course missing our family and friends!

I have been struggling a bit with my symptoms because of my fractured shoulder but I now understand how my brain processes pain. Essentially, pain is a trigger for my FND and PTSD. It’s my bodies way of protecting me and I appreciate that. Although it can be frustrating, my brain has basically got my back 😜

I know that there’s still things I need to work through and accept that my FND may always be with me but I’m OK with that. I’m no longer a FND sufferer. I am a strong, passionate woman who just happens to have a brain that likes to be over protective 😁

The exciting thing is that things are improving. The research and hard work of specialists and charities has improved the support and treatment available for FND. Unfortunately, this isn’t the case world wide but compared to when I was diagnosed 6 years ago, the UK has seen a huge improvement. Long may it continue!

My advice to anyone newly diagnosed is PLEASE don’t give up. Keep fighting for your right to the best treatment. I can’t promise you that it will be easy, it certainly won’t, but if you can be sent in the right direction, you can live a better life again ❀️

Thanks for taking the time to read my story.

Charlotte xxx

Find your smile.

It’s been a while since my last blog post, I’ve been continuing to share and help raise awareness of FND and other chronic illnesses through my fellow bloggers and professional studies.

I have hit a bit of a dark patch. If I’m honest with myself, I can’t handle losing control. I had been suffering for weeks with a painful shoulder after an injury at work and found out last Friday that I have been walking around with a fractured shoulder for weeks. Unfortunately, as a result I have been signed off work. Everyone seems to think this is great but it’s not. I am a person who is always fully devoted to my work. The children I work with matter perhaps too much to me. I had made promises which I can no longer fulfil. This is ridiculously hard for me. Those nasty thoughts and feelings of being a failure come flying back. I know how dramatic these thoughts are but this is one of the downsides of anxiety.

My body has become conditioned since having FND. When I experience pain my emotions centre of my brain thinks I am in danger. As a result it snaps into ‘fight or flight’ mode which then sets off my seizures.

https://en.m.wikipedia.org/wiki/Fight-or-flight_response

Thankfully, these are only happening at night time and I am mostly sleeping through them but poor Mr Right is getting hardly any sleep! Unfortunately, I am absolutely exhausted because I’m waking up feeling like I have ran a marathon πŸ€£πŸƒ

I will always seek out the positives in a difficult situation. Yes, I have had to take time off work to heal BUT (and it is a big one!) I have managed to work a full school year without needing time off because of my FND. I have been working full time in a new direction of my profession and I have survived. I have come such a long way.

Once I have finished wallowing in self pity and I have allowed my shoulder to heal, I will be back on top again.

This Sunday is my son’s 17th birthday. My boys help me to put everything into perspective. They are turning out to be such wonderful, empathetic young men. They have taken care of me this week and manage to put a smile on my face every day.

I will rise from this dark spot and smile again because God knows, I have so much to be grateful for!

Thanks for taking the time to read my story.

Charlotte xxx

What if I just disappear?

Do you keep acting like everything is okay? Do you keep smiling despite the turmoil? Do you ignore the feelings flying around in your mind? I don’t know what to do. Things are getting too much, they really are. I feel so ill again, it’s like I’m hurdling back to square one.

I’ve been here before and I know all the signs too well. I’m literally screaming inside, my heart is racing. The pain and the tremors creeping up. My mental state is severely declining. I can’t tell anyone, no one really wants to hear it. People only care and only want to listen when everything is fine and dandy. Things are most certainly not good.

I write to get these feelings out. I don’t write for attention, just for the hope that someone else will understand. I need not to be judged but just to be understood and listened to. Living with chronic illness is cruel and relentless. Those who are going through it and those caring for loved ones will know and they will understand.

This is the real me, today a pathetic excuse of a mother, teacher, friend. I just have nothing to give. I am drained and suffocating. I can’t be positive at the moment and I’m sorry but I just need to be. I need to curl up in a ball and disappear.

I need help but I just have to deal with it like I always have. Surrounded by so many but completely alone.

Be positive ❀️

I can’t believe how far we have come in less than a year. I often wish I could solve everyone’s problems and wave a magic wand. The people I know, my family and my friends mean so much to me. All I want for those special to me is for them to be truly happy and content. I guess you could say that I want to change the world. Obviously, I know that’s not in my power but I just want everyone to be in a good place, a place without worries and a place where they can live their best life. The thing is, as anxious as it makes me feel to say this, I think I am finally getting there. My life is finally coming together. I’m starting to live my best life.

I want whoever is reading this to know that whatever you are going through, things will get better. It’s inevitable that you will meet hard times along the way but if you can cling on to these great, special moments, you will hopefully see that it really is all worth it.

I am certainly not perfect and have endless lists of flaws but, you know what? I’m perfectly fine with them. My illness is here but I am still living, working and enjoying life just the way I am. I have no doubt that I will still find times when I think I can’t go on however I do and I always will. You all can too. The human race is one that evolves constantly to its surroundings and that’s exactly what we do.

I have met so many strong, amazing human beings in my life and it gives me faith that there’s a point to it all. The many chronic illness warriors who blog and share their stories whilst supporting each other shows the natural built in kindness of people all around.

I am meeting with my new neurologist this week and I’m hoping to lower my medication. I honestly thought that my life was over just 18 months ago and now, as clichΓ© as it sounds, my life has literally turned around. I owe so much to the multi disciplinary team who I had the treatment from at the National neurological hospital in Queens Square. Without their help, I would still be as ill as I was at the beginning.

My journey is far from over and my battle is not won but I now need to fight for those who have just been diagnosed. Those people who have been slapped with a diagnosis, their lives falling apart, and sent packing with a simple website for help. Functional Neurological Disorder is VERY real and ruins lives and the ridiculous thing about it all is that these treatments do help and can work. Yes, there’s no cure but with the right treatment, people’s lives can improve.

I am crazy happy right now, everything I have wanted for so long is finally here. My illness no longer controls me and I will make it my life’s work to make sure that others get the help they deserve.

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