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fndandmecom

Living with Functional Neurological Disorder.

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

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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

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

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