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fndandmecom

Living with Functional Neurological Disorder.

What I choose to become.

It’s been a couple of weeks since I’ve written a post. I have been so busy with work and house hunting. Sadly, my health is quite bad. However, I am extremely pleased with how well my body is coping under all the stress.

If I think back to just a year ago, I was still suffering with non epileptic seizures most days. I was in constant, relentless pain and every day was a struggle. There was absolutely no way I could have done what I’m doing now.

I may be exhausted and I may be suffering at night with neuropathic pain BUT and it is a big one 😁 I’m doing it. I’m getting up everyday. I am working to the best of my ability and learning all the time. I’m even losing weight thanks to my lovely cousin getting me onto Herbalife. I’ve managed to lose 1st 8lb in just 11 weeks. I’ve still got a long way to go but all of these positives are huge for me.

We have started house hunting in the Scottish Borders and may even make an offer very soon. It’s exciting and scary all rolled into one. Everything I have wanted for so very long is finally falling in to place.

When I went to University, I was a single parent. I had a 4 year old and a 10 month old baby. I had spent 7 years in what can only be described as a relationship from hell. I had escaped and now was my chance. I wanted to build a life for me and my beautiful boys. They were and always will be my motivation. I believed that I could do it. I planned to get my degree, buy a house and build our future. Little did I know that everything we went through would put a huge spanner in the works.

PTSD (Post Traumatic Stress Disorder) is an illness associated with ex service men and women. I had no idea how much trauma damages your brain. Like footprints, each awful thing that me and my boys went through, left its mark. I thought that I could just leave it all behind us. I did for a time. When I was happy and safe, my brain decided it was time to deal with it all. Along came Functional Neurological Disorder (FND). That was my ‘spanner’. It came along and took all my hopes and dreams with it.

There was a time that I believed things could never improve. Days went into months. Months went into years. Then, my light came. I was finally offered the opportunity to attend a proper hospital rehabilitation.

The 5 week course that I attended in January was tough BUT worth every moment. I am truly on the road to recovery. I’m not miraculously healed but I’m functioning again. I’m stronger and fitter and living again. Everything that I have worked so very hard for is finally starting to fall into place.

I still have tough days. I still have nightmares. The difference is that I’m dealing with my problems now and that’s all part of my healing process.

We are safe, we are well, we are making progress.

I hope you all can too. If you are suffering, please don’t accept them turning you away. There is help and if you fight hard enough, eventually you will get the help you need.

Thank you for taking the time to read my story.

Charlotte xxx

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My 3 year anniversary ❤️

Today is my 3 year anniversary, I started writing my blog about life with Functional Neurological Disorder 3 years ago. When I started my blog, I wanted to try and raise awareness of this very unknown brain disorder. Over the years, things have improved quite a lot. This is thanks to the hard work of charities such as FND Action and FND Hope and also because of the support groups available online. One I’m proud to be a part of is Friends in N.E.A.D.

If you are diagnosed with something you have never heard of it can be rather ‘bitter sweet’. On one hand, you’re happy to know that it’s not life threatening but on the other, you’re mind goes into turmoil. Questions run through your mind, like, what now? How can I get better? Sadly, too many people are still being diagnosed and sent packing. They’re told that there’s nothing that can be done. That’s so wrong. If I hadn’t started writing my blog, I would have never learnt what I know now. Through my blog, I have found professionals, fellow sufferers and this has encouraged me to never give up and to continuously seek out help. As a result, I finally got the help I needed and I am now starting to recover.

I’m thankful for having this outlet and to be able to share my story. It’s helped me get through hard times and helped me to focus on the positives when they’ve happened. It’s also given me confidence that perhaps, one day, I might finish writing my book. Everyone has a story to share and I feel my story could hopefully help others one day.

I’ve just returned from a very busy few days visiting family and friends in Watford. It was so lovely to see everyone. My health did take a slip but I really did do too much! However, despite the pain and migraines, I didn’t have a seizure which is pretty amazing considering how ridiculously busy I was. It just shows me how much better I am. Even a year ago, I would not have been able to do all of that and not fall ill. It feels fantastic and thrilling. I will now spend the next few days resting and recovering so I’m ready to return to work next Monday.

I love writing my blog and it means so much to me that anyone would be interested in my story. Thanks to everyone who takes time out of their busy lives to help me raise awareness of FND.

Much love,

Charlotte xxx

This is me.

As a race we really don’t like change. We like what we know and tend to avoid what we don’t. Change is hard. In these past few months, I have dealt with so much change. It’s been a myriad of emotions. Exciting and scary all rolled into one. As hard as it’s been, there have been lots of positives.

It’s been quite an adjustment moving from a busy place like Watford to the Scottish Borders. Things move at a slower pace, everyone isn’t in a rush. The result of that is most people are just generally happier, calmer and less rushed! Despite that, my goodness do they work HARD. I am thoroughly enjoying my new role but I won’t deny that it’s very full on. I am trying my best to pace myself to keep my health in check.

I’m extremely grateful for everything and all that is happening each and every day. We’re making progress in all aspects of our lives and that feels absolutely fantastic. I may be feeling pretty exhausted and my symptoms have made a bit of a show. However, compared to how I was just a year ago, things are much better. I’m finally becoming who I’m meant to be!

Sending you all the best of well wishes. Try to remember, although not every day is good, there’s always some good in every day.

Thanks for taking the time to read my story.

Charlotte xxx

Everything becomes clear.

August has been a huge month for me. I have been settling in to my fantastic new job, my boys have started at their new school and Mr Right has also started working. It’s been quite an emotional roller-coaster but thankfully my symptoms haven’t been too bad 😁

If I’m honest, I can’t help but have that niggling fear that things could go wrong. After suffering with Functional Neurological Disorder for 5 long, awful years I had been only living half a life. I’ve been living with a disability and now that I’m finally ‘on the other side’ I still must play with caution. However, it’s definitely time to start living a full life again.

It was such a huge decision to pack up our lives and move to the Scottish Borders but I really feel it has been a good decision. People here are so lovely and friendly. They go out of their way to help you. I didn’t think that I would be able to find such a great work place as before but I’m lucky to be working with some amazing and inspirational people. My new job is very different but it’s definitely the field I want to be in. As I am now working full time, I’m trying my upmost to pace myself so I don’t relapse. So far so good.

The boys are settling in so well at their new school and both say they’re really happy. I honestly couldn’t ask for more. It sounds so cliché but I need someone to pinch me so I know it’s all real. After everything we’ve been through, could this finally be our chance to live the life we truly deserve?

I’m afraid it’s inevitable that things will come along to burst our bubble from time to time but we can face it together. Our family unit is a bond that can’t be broken. This is our time now and we will never forget what we have been through. Finally, I’m excited to see what the future holds.

If you are someone who is a fellow sufferer or another chronic illness warrior, please don’t see my story as a bragging opportunity. I simply want to share with others that things for some of us can get better. I have been to the depths of darkness and survived. Please take any help you can get and I hope for you too, that things will improve.

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

Charlotte xxx

Quote from Pinterest.

Happily ever after.

It’s been a tough week, I have been battling my own mind. I’m extremely excited to start my new job on Monday but unfortunately, as hard as I try, I can’t help but feel anxious. Anxiety is perfectly normal to feel when you’re facing the unknown, however with an illness like Functional Neurological Disorder, my brain and body try to go into ‘shut down’ mode. This is because my brain has become conditioned to going into fight or flight. When my brain recognises anxiety it thinks that I’m under attack. This is the way my brain functions as it had become a survival mechanism after the trauma I have experienced. The difference between now and before my treatment is that I completely recognise the symptoms I’m experiencing (heart palpitations, dizziness, migraine) as signs of panic and anxiety. As a result of being locked into my mind, I have been able to stop the symptoms in their track. This is so very different from before, I’m now in control which is fantastic but I am exhausted after constantly battling with my body.

Try to imagine losing control of your life. You have no say and no understanding of what your body is doing. That’s how I have spent the last few years. Finally, I have taken back the rights, I am now in the process of taking control of my life all over again. It’s really hard to put in to words how this feels. I spent so long believing that I wasn’t good enough, that everything that me and my lovely boys went through was somehow my fault. I know now that it was NEVER my fault. I didn’t deserve what I went through, I have always tried my best for my boys and ultimately we deserve to be happy. We deserve to be happy, safe and content.

I look forward to our new journey. I am good enough and I am deserving. We’re safe now and have the opportunity to grow and develop. It’s fine and normal to feel anxious about starting a new job in a new place. I just have to reassure my brain that everything is different now and that I no longer need to hide away, I can face things head on with my head held high. I’m off to seek our happily ever after.

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

Charlotte xxx

Everything you need is already within you.

After spending so long in the depths of darkness, living with a chronic illness, I think it’s so important to shine a light on the road to recovery. I read a post earlier today that spoke of the lack of positive stories on the Internet. I have to say that I totally agree. When I was going through some of the darkest times, my blog saved me. Having an outlet to air what I was going through helped me so much. So it’s only right that I share the recovery, the light at the end of the tunnel.

If you are reading this and are currently going through your own experience of chronic illness, whether that be Functional Neurological Disorder or another, please believe me that things can get better. I honestly never thought that I would. My life as I knew it changed so dramatically. I went from a young, fit and healthy young woman to some sort of permanently exhausted pigeon. My lovely Auntie would often describe me as a little bird with broken wings. The thing is, I’m learning to fly again.

I waited 5 long years to finally get the help that I needed. During that time, I had to cut my hours at work, my boys became my carers, I lost me. My world shrunk and as cliché as it sounds, you REALLY do find out who your real friends are when illness grabs hold of you. However, here I am. I have made it through to the other side. I’m not miraculously cured but I am so much better than I was before. I have only reached this point by pure and utter determination. I believe that to get better, you must believe that it can happen. You must imagine yourself as you were before. That’s how I approached my treatment with an open mind and absolute determination. The result is that I am finally starting to feel like me again.

I am starting a brand new chapter of my life. A week ago, we took the leap and moved our little family to Scotland. This is our chance now to build the future that we really do deserve. This is the foundation of what is to come. A better, happier and healthier life for all of us. Sure, it’s scary and hard but at last, I feel that I’m heading towards where I’m meant to be. I’m honoured to be able to share this new chapter with my readers. I want to share my journey of life, love and recovery with you.

I may only be 35 but I feel like I’ve lived a full life already. There have been so many hard times but there are also great ones amongst them. I’m ready now for the light and look forward to the new challenges ahead whilst managing my FND. I hope that I will continue to go from strength to strength. Exciting adventures await.

Thanks for taking the time to read my story.

Charlotte xxx

Your mountain is waiting.

I’ve spent so long, hiding from my truth. So much so that I became two separate people. The one that everyone could see, smiling, happy and together. The other was the real me, broken into so many pieces that I felt that there was no way to pull my ‘parts’ back together again.

Things are finally changing. I’m facing all the trauma head on and my body is recovering because of that. The physical symptoms I have endured for the past 5 years, seizures, extreme pain and paralysis are fading away. I believe this is because, at last, my brain is breaking away from the constant fight or flight mode it has been stuck in. The constant ‘triggers’ I have faced are now being processed and understood. I’m actually becoming ‘whole’ again. One person that everyone can see and that I’m not ashamed of. The scars I carry are proof of my ultimate strength. I have literally been to hell and back but I’m still here and shining brighter than ever.

On Saturday morning, I begin the start of my new life. This is a chance for me and my family to start a fresh. New beginnings, new adventures. I have been so touched by all the beautiful gifts and kind wishes from all my friends and family. It’s so lovely to have such wonderful support from everyone and to have been shown such appreciation from the amazing school that I have left. I will now treasure the good memories and learn from the not so good ones. Let’s hope that finally we get the break we have been waiting for, for such a long time!

Inevitably, I have a nasty chest infection and have been given inhalers and antibiotics. Of course, there is no way I could have just moved house without some extra challenges. Those who know me well, know that I never do things the easy way. However, despite being full of fever, my FND has been very well behaved. I will try not to get too excited as I know there’s always the possibility of having a relapse but I’m feeling extremely blessed to be coping so well.

I will be very busy over the next couple of weeks so I will probably be a bit quiet on the blog but as always, I’m happy to answer any questions you may have.

I’m off to climb my mountain.

Thanks for taking the time to read my story.

Charlotte xxx

The battle of PTSD

When someone smiles you assume they are happy. Sometimes that smile is a disguise covering up pain they don’t want anyone to see.

I always assumed Post Traumatic Stress Disorder (PTSD) was something experienced by service people, those in the army and like professions. The thing is it can happen to absolutely anyone. Despite the brilliance of our brains, when we experience trauma, it leaves an imprint that changes the way our brain functions. It’s basically a survival mode, your emotions centre goes hypersensitive. The trauma will always be there but there are ways to retrain your brain. However, you need a lot of love, support and understanding to get through it.

If someone you care for is experiencing PTSD, the list above gives you an idea of what you can do to help them.

Live the life you imagined.

Sometimes it feels as though life is flying by in the blink of an eye. Last year, we started to look at our situation and think about where things were going wrong.

I have been so ill for so long and that’s had a huge affect on us financially and things were going from bad to worse. We knew that we couldn’t possibly carry on, we have been ‘stagnant’ for too long. We spoke as a family with our boys and decided that we would go for it. We decided to move to Scotland. It was by no means an easy decision but we have family there, the cost of living is much better and it could give us a real chance to make our lives better and easier.

That was back in September last year and now, just like that, the time is nearly upon us. We are moving in just 3 weeks. I’m feeling so many mixed emotions. I am leaving behind some amazing people who have helped me through some extremely tough times. My beautiful sister, my amazing best friend and my fantastic Uncle and Auntie. I honestly don’t think I would have made it through the past 5 years without their love and support. I am also leaving a job that I love. I have been so lucky to work with some amazing and inspirational people. Despite the fact I have been so ill, I have still had the opportunity to become a better teacher than I ever thought I could be. I will always treasure the memories of the children I have taught and hope to use what I have learnt in my new job role in Scotland.

I have to mention the current heat wave that has been extremely difficult to cope with whilst working. My fellow chronic illness warriors will understand just how much these extreme temperatures can set you right back. However, I have been pleasantly surprised with how well my brain and body have coped. If this had happened a year ago, I would have been in hospital. Thanks to my continuous improvement, I haven’t missed a day off work.

I’m hoping that my brain manages to cope with the stress of moving. I have much in place to help me get through this. Of course, I must pace myself as much as possible and not let my anxiety affect my life. We’re going to do this, it might be a big mistake but it could be the best decision we make as a family. No one ever gets anywhere by lingering and wondering what if? You never know until you try.

Thanks for taking the time to read my story.

Charlotte xxx

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