Living with Functional Neurological Disorder.

Final week of the FND rehabilitation.

Just five weeks ago, I entered the Royal Hospital for Integrated Medicine, a broken and exhausted mess. I had been living a constant hell for five long years. A world of constant pain, fatigue and dismay. I have had ways of coping. Writing my blog has been my own therapy. It’s been a way to offload and keep positive. Today, as I said my goodbyes, I left a stronger woman. I felt that I finally have my mojo back.

My first appointment yesterday was physiotherapy. We discussed the goals I had set and the things that were causing me the most problems at the start of the course. I am so pleased to say that my pain has improved so much. Now that I have a better understanding of the pain mechanism, I am able to manage it much better. My fatigue has improved and once I return to my normal working week, I can continue to implement what I have been taught. The biggest triumph for me is that I’m beginning to exercise again. I am gaining fitness and not dropping on the floor when my heart rate rises. Even after having a non epileptic seizure, I was able to complete my HIIT workout. The endorphins are giving me such a buzz. Overall, my physio has helped me to trust my body again. I am so very grateful for what she has done for me.

My second appointment on Thursday was Cognitive Behaviour Therapy (CBT). My therapist has been amazing. I have felt that I could trust her, she made me feel safe. The work she has done with me has helped to heal all my broken pieces. I now feel like my jigsaw pieces are joining back together. I have carried so much shame and guilt for so long. Now I realise that I have NOTHING to be ashamed of and NOTHING to be guilty about. I am a good person and I deserve to be happy. Through the work we have completed together, I am now able to recognise and experience different emotions in a healthy way. I think I mentioned before that for so long, I have been watching myself from the outside. Now, I’m one person again. I can feel, laugh, cry and be me again.

My final appointment was with my support worker. At the beginning of the course, I completed a range of assessments. In this appointment I completed them again so we could compare them at the final meeting.

Today was my final day. I was meant to bring Mr Right along but his horrible boss said he couldn’t have the time off. My wonderful Auntie K and Uncle A stepped up once again. Unfortunately, my youngest son was poorly so my Auntie looked after him and my Uncle came to the meeting.

The meeting was a review of the course and target setting for the next 3 to 6 months. I will have a follow up in 6 months. It was so positive and lovely to have the support of my uncle there. They congratulated me on all my progress and hard work. I got to say goodbye to some of the wonderful fellow patients I met.

Although I am sad that this has come to an end, I’m definitely ready to face the world a stronger, more confident me.

I was determined to get the most out of this course and I really believe that I have! I know that my FND symptoms haven’t just disappeared but the difference is, I now have the tools in place to manage everything better and who knows, one day, I might be well again.

I hope my story gives others strength. I know we a have our own battles to fight and some people have more to fight than others. My battles have been horrific and I never thought I could heal but I am. I’m actually healing finally after all these years. Please don’t ever give up.

I am so blessed to have had the support from Mr Right, my boys and my fantastic Auntie K and Uncle A. Without them, I wouldn’t have got through it. The kind and supportive words of my friends and family have helped too.

I am at the start of a whole new beautiful life and if you would like, I will like to take you on this journey with me!

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

Charlotte xxx


Week 4 of the FND rehabilitation course.

Despite the exhaustion, I’m feeling amazingly invigorated. I feel like my life is starting over again. It’s starting over but in a new and exciting way.

I can’t believe that next week is my final week of the Functional Neurological Symptoms rehabilitation course. Part of me doesn’t want it to end but this ‘new me’ knows that I’ll be okay.

My first appointment on Thursday was CBT. I was set homework last week, it was an incredibly hard assignment. In this appointment, we used my homework to work through. I can feel my body, my spirit lifting. As hard as it is, I feel that I’m finally setting myself free from all my evil demons. My therapist is amazing. She helps me to see things that I just couldn’t see. Wishes are regrets. You can’t change the past and by wishing you can, you stay in a cycle of constantly reliving your regrets. She taught me how to let go and move on. I can’t explain in words how that feels but all I can say is that my broken soul is renewing into something so much stronger than before.

My next appointment was occupational therapy. We made a second trip to the large supermarket. This time, it was different. I was able to control my symptoms so much better. I managed to stay in there for longer and I didn’t have a seizure. I cried when we left but this time they were happy tears.

My final appointment was physiotherapy. This was a full on work out. She showed me a HIIT workout. This is a high intensity work out that conditions the heart to speed up and slow down without any symptoms. I was shocked at how well my body coped and it just felt amazing to feel my heart speed up and not suffer because of it.

I was absolutely shattered last night but I still managed to help my son with his homework and read and do ‘bath time’ with my youngest. It made me realise that I am a good mum and I really do the best that I can.

Today started with CBT. We continued to work on my trauma. It’s amazing how people are seeing physical changes and a shift in my personality. My wonderful auntie said it’s like I have my mojo back.

My final appointment this week was occupational therapy. We were back in the kitchen. This time, I was making a fruit salad. My therapist showed me how to lessen my tremor which made chopping so much easier.

This has been such an incredible transition. The work has been very hard but so worth it. It’s been so lovely to have people tell me how well I’m looking instead of how ill! I know that I still have a way to go but I feel that I am healing. I’m becoming one person again, I am strong and the scars I have are proof that I’m a true survivor. I have no doubt that I will have to deal with other hardships throughout my life. However, now I know that I have the strength to deal with anything that is thrown at me.

The team I have worked with are fantastic. If you really want to get better and are willing to do whatever it takes, I truly believe you can. If I can heal after everything that has happened to me, please believe you can too!

Thanks for taking the time to read my story. Those of you that have followed my journey, have all been part of my healing process and for that, I will always be grateful.

Charlotte xxx

Week 3 of FND rehabilitation.

The third week of the Functional Neurological Symptoms rehabilitation has been extremely hard but very productive.

On Thursday, my day started with occupational therapy. Since my symptoms started, I experienced 3 seizure episodes in large supermarkets. As a result of this, I have avoided going into this environment. I am fine with little shops like Coop but when entering large supermarkets, I experienced the sensation of the floor coming up towards me and then I would collapse.

My task was to try and overcome this ‘fear’ and enter a large supermarket to buy some food.

I have always said that I’m not an anxious person. I truly believed this until now. For the first time in goodness knows how long, I am beginning to recognise my feelings and emotions. After all the awful events in my past, I have developed a coping mechanism of complete and utter dissociation. I have found it easier to live my life as if I’m watching myself from the outside. Perhaps I was too scared to actually listen to what was going on inside. It’s been easier to live my life as a split person. One person being the smiling, happy girl that everyone sees. The other person, broken beyond repair. Now, for the first time as I walked to the supermarket with my occupational therapist, I could read and understand my emotions.

I was absolutely anxious. My brain has learnt to associate these places with danger so when I try to go there, my body shuts down. However, with a lot of support, encouragement and rest breaks, I did it! I went in to the shop and I didn’t collapse. I was able to recognise my emotions and cope with them. This may sound quite trivial but it really is great progress for me.

My next appointment was with my physiotherapist. The main focus was practising relaxation techniques and pain management. I am really pleased with the progress on my pain. It hasn’t gone but it’s definitely improved. I am getting better sleep and feeling less frustrated.

My final appointment for Thursday was CBT. This session was extremely intense but it was productive. We looked at how I feel and why I feel that way. We had to talk about the trauma I have experienced. This is the hardest part. For so long, I have buckled up my feelings and carried on. This is why I believe my functional symptoms developed. The things that I went through were horrific and I didn’t want to tell anyone about them. The trouble is they did happen and by bottling up all this anger and hurt, my body had to eventually release it through physical symptoms.

I have lots of homework to complete for CBT and this is going to be part of my healing process.

Today has been much ‘lighter’. I was feeling exhausted from yesterday but still determined to get the most out of it.

My first session was occupational therapy. The focus of today’s session was cooking. Due to my functional symptoms, I find cooking difficult. It’s mostly lifting and chopping. She taught me methods to help make this easier. I got dinner cooked too 😊

My final session was physiotherapy. The focus today was working on my muscles. She taught me some muscle stretches similar to yoga to help strengthen and loosen my legs and back.

I can’t actually believe that there’s only 2 weeks left of this course. I am so lucky to have this opportunity. If it wasn’t for my wonderful Auntie K, Uncle A, Mr Right and my amazing little men, I wouldn’t have been able to do it. For the first time in a VERY long time, I can see light at the end of the tunnel. I think there’s a chance I can heal. I’m not expecting miracles but things can get better than they have been.

Thank you for taking the time to read my story. I hope that my story can give hope to others. I might only be at the beginning of my journey but I think if you want it enough, life can get better.

Charlotte xxx

Week 2 FND Rehabilitation course.

I have managed to stumble upon Friday and feel extremely positive about my progress this week. It’s two weeks down and three to go.

This week, my course started with a progress meeting. I met with the neuropsychologist. We discussed the first week and how I found it. Then we looked at next steps. She was extremely thorough and instead of just a one hour meeting it went on much longer. It was very productive and despite feeling like absolute poo, I am happy with what has happened so far. 

So, Thursday was packed. I was already feeling quite poorly after 2 and a half days of work with no break. However, I achieved so much, it was worth it! 

My first appointment was CBT (Cognitive Behaviour Therapy). I was quite dismissive of this part of the course after two previous courses of the same treatment. Luckily, I was pleasantly surprised. 

We started the session by thinking about what I find difficult that I didn’t before. We looked at behaviour linked to FND. The fact that my body has become conditioned to certain triggers, such as, loud and crowded places. Then we looked at my neuropathic pain. I tend to try and ignore my pain and he explained that if you ignore it, the pain won’t go away. We practised focusing on the pain as he explained it will heighten then eventually plateau. Whereas when you ignore it, the pain will continue to fluctuate. This will of course, take a lot of work but it helped me to become more aware of how my brain interprets pain. I found the session difficult but very useful. 

My second appointment was physiotherapy. We looked at my main issues that affect me physically. I told her that it’s mainly pain, seizures, paralysis and swelling. She taught me ways to bring back the movement in my legs. It involved rocking back and forth to the point that activates my natural response to stop me falling. Then we practised rocking from side to side on my heels. This again reactivates the bodies natural responses which should reactivate the lost signals from the brain. Finally, we looked at my gait (walking). She showed me in a mirror, facing the treadmill, how my right leg drags as I walk. She taught me ways to strengthen and improve this. All in all, I found it so interesting and helpful.

My third appointment was with the Occupational therapist. Here, we discussed my day to day routine. She was quite shocked at just how busy each day is. We discussed ways of lessening my fatigue and how it’s important to have rest breaks throughout the day. We then agreed to make this our focus for our next session. 

When I woke up on Thursday morning, I was terribly fatigued and in agony. I didn’t want to go. If it wasn’t for my lovely Auntie K and Uncle A encouraging me and supporting me, I wouldn’t have gone. I’m so glad I did. I left last night, feeling excited and so positive. 

Today’s sessions were mostly a follow on from yesterday. I started with Occupational therapy. We looked at the importance of trying to separate all my activities through the day. I had to separate them into groups. Do, Delay, Delegate, Drop. The purpose of this is to prioritise my jobs so that my workload lessens which should help improve my fatigue. I have homework to plan in rest breaks for my day and start to put in to action the 4Ds mentioned earlier. Again, this all makes sense and I am going to try what she told me.

My final appointment was with my physio. The focus today was my swelling and pain. She was quite concerned about my swelling and has advised me to see my GP. However, for now she has shown me special massage and advised me to elevate and use my eczema cream. Next, she explained how pain works. She said my pain is neuropathic (nerve) pain. My brain is alerting me to danger that isn’t there. The pain is very real despite no injury. She explained this as thinking about heat from a pan. The heat causes pain as an alarm to stop you from damaging your skin. Due to malfunction of my nerve centre, my brain is alerting me to danger that isn’t there anymore. I have homework to read over in preparation for next week. Again, another interesting and helpful session.

This process is thoroughly challenging, physically and mentally. However, after just two weeks, I can see the benefits already. There could possibly be, light at the end of the tunnel. This treatment and the team I’m working with are beyond amazing. If you have FND, please look into this. I’m happy to answer any questions about it.

Thanks for taking the time to read my story. 

Charlotte xxx

Week One of FND rehabilitation course.

I have just got home after my first week of FND rehab. It’s been so hard and I’m beyond exhausted but still feeling quite positive. 

The first day, we met as a group with all the members of the team. They gave us a breakdown of what to expect and handed out our timetable for the day. After two horrific tests I met with my support worker. She is very approachable and made it clear that she is the person to turn to with any problems. 

Next, I met with the neuropsychologist. This was probably one of the hardest parts of the day. We discussed the trauma I have experienced and how this could possibly be linked to my FND.

Finally, I met with the physiotherapist and the occupational therapist. We discussed my symptoms, my triggers and what I’m hoping to achieve. 

Last night, I was an emotional wreck. I was both mentally and physically drained. When my wonderful Auntie K and Uncle A pulled up outside the hospital, I felt as if they were my knights in shining armour and pretty much collapsed in to the car. I’m so lucky they came as I was in no state to get a train!

Today has been much easier. We met together and had group education and therapy. It was strangely comforting to be amongst fellow sufferers. We understand each other and our symptoms are closely linked. I felt safe and when I had seizures, they knew exactly what to do. As did I with them.

I left today feeling positive, rough as hell, but very positive. I know that the next few weeks are going to be immense but I just hope they’ll be worth it. My timetable for next week is packed but now I have goals to work towards and I know what needs to be done to meet those goals!

I had originally planned to write about my experiences each day. I know now that that’s probably not going to be possible so instead, I will try to update weekly on my progress. Fingers, eyes, legs and everything else crossed that this helps.

Thanks for taking the time to read my story.

Charlotte xxx

New year, new opportunities. 

What a year it’s been! Our little family has been through so many ups and downs. It’s been a difficult year for the world too. The media taking any chances it could to grasp onto any bit of ‘happy’ news it could! Fine examples being the announcement of Royal baby number 3 and the engagement of Megan and Prince Harry! The world we live in is becoming a hostile place, I guess it’s our job as parents to try and focus on the positives even when there are so little. 

This coming year, I will face many challenges. There’s going to be lots of hardship but along with that, many exciting new adventures. I’m about to start the FND Rehabilitation course on Thursday. This is a great opportunity and I plan to give it my all. I am so blessed to have the help of my wonderful Auntie K and Uncle A. If it wasn’t for them, I wouldn’t be able to take up this chance. They ALWAYS go above and beyond to help our little family. They do all this, despite the fact that they have their own family to look after. We really don’t deserve all their help and I just wish there was a way to thank them properly! 

Over the next 5 weeks, I will be working all day Monday and Tuesday and half day on Wednesday. The rest of the week, I will be at the hospital attending the rehab clinic. This means, I have no rest days other than the weekend. I’m anxious as to whether my body/brain will cope but I know that I can be strong. I have my boys and Mr Right and with them or at least for them, I can achieve anything. 

I will try and post each day, if well enough, about my experiences at the rehab in the hope that it will help others decide whether it is right for them. It’s all quite exciting and hopefully, a great way to start the new year!

As well as the rehab, I will be making some huge changes this year. I will reveal those closer to the time. I’m hoping all of these together, will make for a better, more secure future for our little family.

I would like to take this opportunity to wish all my readers an amazing New Year 2018. I hope this year brings you nothing but happiness and wellness. 

Thanks for taking the time to read my story.

Charlotte xxx

Merry Christmas 2017!

I am blessed beyond belief. I have been lucky to have a wonderful Christmas day surrounded by loved ones. I haven’t been too unwell which is a huge blessing.

I will spend the rest of the day thinking of those less fortunate and pray for a better tomorrow for them all!

Merry Christmas to all of my amazing followers, I hope your day has been full of magic.


Charlotte xxx

My next chapter. 

I can finally stop and enjoy the Christmas festivities. There’s a lot of exciting times ahead. At the beginning of January, I begin the FND rehabilitation course at the Royal Hospital for Integrated Medicine. It’s going to be really tough, I will be working Monday, Tuesday and half of Wednesday then for the rest of the week, I will be attending the hospital. This means that I will only have the weekend to rest. I hope my body doesn’t let me down.

The rehabilitation course lasts 5 weeks. I will be meeting with a multi disciplinary team. A mixture of neurologists, physiotherapists and psychotherapists. I am not sure what to expect but the results are promising. I have to give myself a chance to get better. I want my life back. I will approach the course with an open mind and hope for the best. Perhaps, 2018 could be the year when everything changes for the better! 

I have begun psychotherapy and have had my diagnosis of PTSD (Post Traumatic Stress Disorder) confirmed. It’s a lot to get my head round. It means to me, that even after all these years, my ex husband is still having a negative impact on my life. My therapist feels that I have a lot of inward anger. This is understandable after everything I’ve been through. We’re working on me being able to accept help and care from others. She said that I need to realise that I matter too. It’s a long process but I feel safe with my therapist. She makes me feel calm and comfortable and I am able to discuss things that are very difficult to open up about. Unfortunately and inevitably, I am experiencing a rise in my seizures and paralysis but I think this is my brains way of processing the really ‘hard’ stuff!

I have been really touched by the responses I am receiving about my blog. The other day, I had people from over 20 countries visiting my pages and that makes me feel that I’m most definitely raising awareness of FND. I love writing and this blog is just the start for me. Thank you to all of you who take the time to read, follow and share my blog. It means more than you could imagine. 

I have the next two weeks to rest and enjoy time with my boys and I look forward to new beginnings in 2018 on my road to what I hope will be recovery! 

Merry Christmas! 

Charlotte xxx

Fighting the darkness.

It can be incredibly hard to stay positive when living with a chronic illness. Unfortunately, many sufferers develop depression and anxiety. This is understandable as dealing with constant pain and fatigue can really drag you down. 

Depression is like a dark, heavy raincloud. It follows you everywhere you go and is the last thing a person needs when already dealing with so much! So, the question is how on earth can you stay positive when living with an illness like Functional Neurological Disorder? 

I have put together a list of what I do to keep as ‘happy’ as possible. Once again, I am NOT an expert. I’m definitely NOT medically trained and by no means would I ever want to offend anyone. Each and every one of us is completely different. What works for me, may not work for another but if I can help anyone, then that’s great! So, here it goes …

1) Take each day as it comes. It’s inevitable that you will probably have more bad days then good. However, try and not to plan too far ahead. Chronic illness is so unpredictable. If you have a good day, enjoy it and savour it BUT try not to over do it!

2) Focus on the positives. Yes, I can see your metaphorical eye rolls lol. It’s true, believe it or not. When you’re lying in your bed in agony and feel like there’s no point anymore, close your eyes, take a deep breath and focus. Today is a hard and awful but there’s still hope. Do you have a roof over your head? Do you have friends, family or colleagues who care for you? Have you eaten today? If you can answer ‘yes’ to any of these questions, then you have more to be grateful for than you realise. 

3) Do one thing that you love each day. This is very tricky, especially if you are juggling illness, family and work! However, you have to remember that you matter. Please don’t take this in the wrong way, I’m not saying throw away all your responsibilities and run off in to the sun! Just try and think of simple things. Listen to your favourite song, relax and read your book or laze in front of the TV. Basically, whatever ‘floats your boat’. Even if it’s just 5 minutes. It’s so important to remember that you and your happiness matter. Give yourself some ‘me’ time and it makes a big difference! 

4) Ground yourself. This is a technique that I have been taught by both psychologists and neuro physiotherapists. I have, kind of, made my own interpretation of it that helps me fight off the dark clouds. It can become overwhelming, living in constant battle with your own body. It’s like being sucked into a black hole. When I feel this I simply take 5 deep breaths, in through your nose and out through my mouth. Then, I look at 5 different things around me. It could be the windows, the trees or even a flower. I take notice of the feeling of my feet on the ground, my bottom on the chair. I appreciate feeling alive and the simplicity of everything around me. Again, this works for me but it may just seem weird to others and that’s fine.

That’s it, my list of fighting away those nasty, black clouds. I hope some of these might help, even if just temporarily. 

Thanks for taking the time to read my story.

Charlotte xxx 

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