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Living with Functional Neurological Disorder.

I put my pieces back differently.

Do you ever allow your mind to wonder back to the past? Do you ever think about who you were and who you have become? Life has a funny way of moulding you. Your life experiences shape you at every turn. You don’t really get a chance to step back and witness these constant transformations. However, they happen all the time. Some of us choose to learn from the many lessons we are taught but some of us can become caught in a constant spiral of repetition.

I used to feel angry at the old me for what I ‘allowed’ to happen. It wasn’t until my rehabilitation that I finally let go of all that anger. Instead I began to feel passion and love for the younger me. Everything that happened was not my fault and I certainly didn’t deserve any of it. There was no one there to protect me and I was so young, barely older than my eldest son is now. I couldn’t imagine either of my children having to deal with anything like I did. In fact, I wouldn’t wish it on anyone not even my worse enemy (not that I have one!)

The thing is, although I was damaged by my past, I wouldn’t want to change it. All that has happened has led me to who I am meant to be. I will always carry my past with me as it is part of my DNA and it is not something I am ashamed of. The scars I carry are proof of my strength. I have been to the lowest points a person can reach and have been knocked down so many times, I have lost count. Yet, every single time, I rise again. I will always get back on my feet and will always be stronger than before.

This past month has been awfully tough. I have lost 3 close family members in 3 weeks. It makes you realise just how precious life is and how important it is to hold your loved ones close. Despite all of this my health is doing okay. Everything that’s happened has made me appreciate just how lucky I am. I have been using my learnt methods to cope better with my symptoms which is allowing me to support my family at this difficult time.

We all have a past, there will be things we are proud of and things we would like to forget. However, all that has happened has made you who you are today. You must be proud of yourself, whatever you have dealt with, good or bad, has helped you to get to where you are meant to be.

Thanks for taking the time to read my story.

Charlotte xxx

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FND Awareness day 2019.

Check out @FriendsInNead06’s Tweet: https://twitter.com/FriendsInNead06/status/977825991505661952?s=09

Escape the darkness.

I thought I saw you today, yesterday and last week. The memories of you haunt me at every turn. How can it be that even after all this time, your face is so vivid in my mind?

I often wonder why must I still suffer? The pain that I endured all those years was surely enough. I bare the scars of all that pain. Scars that run not just on my skin but deep inside me. My mind wonders dangerously back and forth. I can’t escape these dark thoughts. It’s like I’m trapped in my own personal hell. I try to convince myself that it’s not my fault but doubt creeps slowly back in.

Some days I feel as though I am suffocating, screaming so loudly inside but only I can hear it.

The damage you cause even now is shocking. Knowing that you have the power to ruin my each waking moment breaks me into tiny, shattered pieces. I hide behind the smile. Everything is fine. Things are great. They should be. My dreams are coming together but I just can’t get away.

How dare you have this power. I don’t want you to. I need to escape from this but I just don’t know how. What’s the answer? How do you erase a part of you that’s so big. A part of you that shaped who you are. I thought I was fixed, that I had finally let you go. Yet here you are consuming my life again.

My instincts kick in and I want to take them with me and hide. I want to hide away and keep them safe. There’s no one I can really trust. No one understands. If I talk to anyone, they’ll think I’m mad, irrational.

I’m not a religious person but if there was a God, I would pray for him to keep us safe and to help me to be stronger than I feel right now. Help me to raise up and grow and finally be set free from my past.

One day, I will look in the mirror and see who I was meant to be. The me before the hell of you.

Keep fighting.

The struggle is real but despite everything I am still standing. FND can be so debilitating and the fact that I am working full time makes me proud. Some nights /mornings are harder than others but it’s all about pacing. Following the spoon theory.

If you want to work when living with a chronic illness, you have to learn to say no. There’s only two precious days at the weekend and you must use them wisely. I want to spend quality time with my wonderful Mr Right and my fantastic boys and I can. However, I must give my body a chance to heal and recover so that I can make it through another week. It’s essentially all about balance. I will spend my Saturday doing the things I love with my little family. Sunday is my day off. A completely selfish day of nothing.

For so long, I would feel ridiculously guilty for having a ‘nothing day’. I realise now that I have to. If I am to continue working full time in a challenging job, I have to give my body time and these nothing days are exactly the right medicine.

I know how lucky I am to be ‘well’ enough to be able to work. I know that many of us with FND want to work but can’t. When I was first diagnosed, I tried to keep working but had to stop for a little while and for me that was heartbreaking. So I really appreciate where I am now. Considering how ill I was back then, I have come a hell of a long way!

Each day is a challenge, managing my huge array of symptoms caused by FND yet here I am, everyday taking on that challenge and never giving in. I have developed labrynthtitis- an inner ear infection which is causing terrible dizziness, it’s a pain and making walking a bit tricky but nothing I can’t handle.

Keep fighting, there’s a whole world out there waiting for us all!

Thanks for taking the time to read my story.

Charlotte xxx

Rest and recovery.

It’s been a long time since my last blog post, unfortunately, I have had a relapse/blip with my Functional Neurological Disorder. I met with my GP today who, thankfully, is clued up when it comes to my illness. He was fantastic and spoke with clarity. What he told me, I already knew but if I’m honest, I have been trying to ignore. What absolutely tears me apart is the harsh reality that I will probably never be fully recovered. My illness is one to be managed rather than one to be cured. That’s not something that I, or anyone really, wants to accept. It can lay in waiting, luring you into a false sense of security then BANG just like that, it rears its ugly head.

It’s certainly not all doom and gloom, my seizures have been happening mostly at night. My pain is bad but nothing like before. Considering the HUGE life changes we have been through my body and brain have coped incredibly well. I started another new job at the beginning of January. It’s challenging and has made me doubt myself but I think it is the nature of the type of work I’m doing. I have gone from working 2 and a half days to full time. I have relocated my family to another country and had to leave behind some of my close friends and family. All of these factors are going to take their toll!

What I don’t want to risk is ending up how I was before. I lost so much time when I first fell ill. I will not put myself or my children through that again.

I’m happy and content. I’m blessed to live this life. I have made a difficult decision but it is also the right decision. We have our own beautiful little house, our boys are thriving and we have been welcomed to the Borders by some lovely new friends. We are even going on holiday in July. The first holiday that we have been able to pay for. So, yes, things are quite tricky for me at the moment BUT I am so much stronger than this. Nothing that happens now can ever compare to the darkness I have seen.

I will listen to my body and take some time to rest. I have a few days off now to recharge and have my beautiful bestie coming for a visit. It’s important for all of us to have some rest and recovery time. I hope you get to have a restful weekend too.

Thanks for taking the time to read my story.

Charlotte xxx

The quality of your thoughts.

It’s been an extremely busy start to 2019 for me and my little family. We have settled in nicely to our lovely new house and I have just got through my first week of an exciting new job. I’ve been so blessed to have the opportunity to work with some amazing people and fascinating children and I now look forward to this new challenge. I have so much to learn and can’t wait to get things into full swing.

My health is holding up amazingly well. Unfortunately, my lovely Mr Right said that I am having quite a few seizures in my sleep but at least it’s not causing any issues during the day. On top of that, I have started to have night terrors again. I keep waking up the whole house with blood curdling screams 😕 my poor boys keep thinking I have fallen down the stairs or worse. I have spent time explaining why they happen and they seem to be reassured. Hopefully, they will settle down again soon.

Although, it all sounds quite tragic, considering how extremely busy I have been and how much change I have had to deal with, it really is brilliant. The thing is my brain and body still have a lot to work through and I’m thankful that they’re choosing to do all the ‘working out’ when I’m asleep!!

All of this is just a quiet reminder that FND is always going to be part of me. The difference is that it no longer defines me. Every day that I get through is a mini achievement, a blessing. My health means so much more now than it ever did before. When you wake up every single day in constant pain and think that is how it is always going to be, that first day when it’s finally gone is like a miracle. Now I can start looking forward to things again. I can make plans and I won’t have to cancel them. I can give my all and not suffer the consequences.

I’m going to listen to my body and pace myself this weekend. Allow myself to rest and recharge ready for the week ahead. If things get any worse, I’ll see my neurologist but for now, I just need to let it be.

Thank you for taking the time to read my story.

Charlotte xxx

The sun will rise again.

This time, just a year ago, my life was so very different. I was so poorly as I had been for 5 years prior. We were in financial disarray not knowing how we were going to afford the rent due in just a few days. Fast forward to now and my life has literally flipped around. I’m writing this blog post in my very own sitting room, in my very own home. If you had told me that my life would be this much better just a year later, I would never have believed you!

Living with Functional Neurological Disorder for the past 5 years, I honestly thought that my life was over, that I was destined to live in turmoil forever. I was so ill, living in constant pain. I was suffering because of the trauma I had suffered years before. It’s awful, if you go through the things I have been through, you would think that was enough suffering. Little did I know the damage the trauma caused my brain. You see, we all experience trauma at some point in our lives but it’s so important to recognise it and essentially DEAL with it. Your brain needs that otherwise, it can’t know that the danger is no longer there. I know this now and I want people to take note. We are so much more vulnerable than we realise.

My life up till now has been such a struggle. I have been so blessed throughout the years by family, friends, colleagues who didn’t give up on me. If I had dealt with all of this on my own, I honestly don’t think I would be here today. At my lowest points, I felt so lost, so trapped but there was always someone there to help me pick up my broken pieces. That’s something I will always be grateful for.

I received a phone call about a week ago from the doctor who runs the FND rehabilitation programme at the Royal hospital for Integrated medicine. When I had the treatment, I responded so well that they asked me to act as a case study and to record me in an interview. I was more than happy to help after all they had done for me. The doctor was calling to ask permission to share my interview at another huge conference for patients and medical professionals. What really touched my heart was the kind words of the doctor. She said that ‘my voice is powerful’ and that meant a lot. I want so much to make a difference, to help others and if by sharing my story I can do that, I will be so happy!

I look forward to this new year and wish all my readers a happy and blessed year ahead. I am entering this new year, stronger and healthier. We finally have our own home, my boys are thriving and I am starting a new adventure career wise. I have made some lovely new friends and am blessed to have my family and friends from Watford still supporting me.

Things can get better, it can take a very long time but if you keep believing and don’t give up hope. The sun will rise again.

I am thankful for the life I’m living and will never take things for granted ever again.

Thanks for taking the time to read my story.

Charlotte xxx

Damage no longer controls me.

The past few weeks have come with many challenges. My emotions have been up and down like a roller-coaster. However, I have faced them head on and dealt with them the best I could. I’m so much stronger now than I have ever been. I’m healing and growing everyday and finally heading in the right direction.

Although I have met many challenges recently, these have been part of my journey. These hardly compare to the things I have dealt with in the darkness of my past. After you’ve experienced things like I have, you become hardened. For so long, I was living like two separate people. I forgot what it was like to actually feel like me. I forgot how to feel at all.

I am coming back together again, like pieces of a puzzle. As I build myself up, I am strong enough to deal with whatever is thrown my way. As hard as it’s been, there have been so many little lights of hope. A year ago, if I had any of the stresses I have had recently, I would have fallen so ill. My body had become so conditioned to pain, seizures and insomnia that it was my ‘go to’ whenever things got tough. Things are different now. The triggers that once dragged me back to darkness are no longer in control.

FND will probably always be a part of me now but it no longer defines me. I am becoming a well person again.

I want to thank everyone from the bottom of my heart. Everyone who has been part of my journey, even if only for a short while. All my wonderful family and friends, old and new. Together, you have all been there in your own ways. You have been part of my puzzle, you have helped me to find my pieces. I might not be quite finished but if it wasn’t for ALL of you, I would still be a broken woman. I am truly blessed.

I want to help others and am always happy to answer any questions from my fellow FND/chronic illness warriors. Please let me know if I can help.

Thanks for taking the time to read my story.

Charlotte xxx

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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