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Living with Functional Neurological Disorder.

International FND Awareness Day 2018. #LetstalkFND

This Friday is International Functional Neurological Disorder Awareness day.

Why are we raising awareness? It’s quite simple, despite this brain disorder being an extremely common neurological illness, so many still haven’t even heard of it. A lack of knowledge and understanding equals to stigma and a real lack of treatment. This has to stop. FND ruins lives and all too often, patients are diagnosed and sent packing. They’re left to try and live a normal life, dealing with a myriad of symptoms that are very debilitating. That’s why it’s so very important that we work together to stop the stigma and raise the understanding.

I started writing my blog, fndandmecom.wordpress.com ,

because when I was diagnosed in 2013, I was shocked to find out just how common it was and that no one had heard if it. I have been extremely lucky to find various charities and support groups who share my passion in raising awareness of FND. I am thrilled to work with the lovely people at Friends in NEAD. We are now lucky enough to be working alongside the charities, FND Hope UK and FND Action. Together, we aim to raise awareness and understanding of this complex chronic illness.

What is Functional Neurological Disorder?

Good question, the way it has been explained to me, when I attended an FND Rehabilitation in January, is that it’s a malfunction of the amygdala. Which is described as:
Definition and Function of the Amygdala. The amygdala is an almond-shaped section of nervous tissue located in the temporal (side) lobe of the brain. … They are thought to be a part of the limbic system within the brain, which is responsible for emotions, survival instincts, and memory.

I was told that the emotion’s centre of the brain stops functioning correctly. In my case, I now know that this is due to trauma. However, in some cases, patients have been known to develop this malfunction because of a physical injury and sometimes, unfortunately, there is no apparent reason and it just stops working correctly.

In my case, the trauma I had experienced as a young adult had caused my brain to become confused. I never dealt with or spoke about the terrible things that happened. As a result, when my brain felt that it could begin to process the trauma, my FND symptoms began. In the build up to my symptoms starting, there was a range of circumstances that I now know were ‘triggers‘. Triggers are moments that tell my brain that I’m under attack. Hence it goes into fight or flight mode and my symptoms jumo into action.

I am not medically trained and do not claim to be. This information is what I have been taught by medical professionals in my quest to understand my condition.

You can find more information about what FND is at the FND Hope or FND Action websites and also at http://www.neurosymptoms.org

What are the symptoms of FND?

Where do I start? This is again quite tricky as sufferers can have maybe one or two symptoms or all of them. Here’s a list of the symptoms I have experienced over the past 5 years, please forgive me if I miss any out!

1) N.E.A.D- Non Epileptic Attack Disorder. Also known as NES- Non Epileptic Seizures. These are full body convulsions caused by a confusion of signals in the brain. They are VERY REAL and extremely painful. Unfortunately, some uneducated medical staff believe that these are ‘fake’. They are most definitely NOT. You have no control over them and unlike epileptic seizures, most people tend to be awake but unable to respond.

2) Paralysis. I am lucky in the fact that the paralysis I experience is only temporary but some patients, sadly, don’t regain movement. Personally, my paralysis can last anything up to a few hours. Sometimes, it’s just my legs. Other times, it’s my whole body.

3) Chronic pain. This can be neuropathic or just generalised but it’s so relentless.

4) Chronic Fatigue. This isn’t just tiredness. This fatigue is sleeping for 12 hours but still feeling absolutely drained.

5) Memory problems. This again varies from person to person but can be very troublesome when standing in front of a class of 30 children!

6) Functional Tremor. This can be your hands, arms, legs or everything.

7) Body temperature. Sounds trivial but imagine feeling so cold that it feels as if ice is running through your veins. Then an hour later, sweating like a pig for no apparent reason. Trust me, it’s a pickle!

That’s just my experience of living with FND for the past 5 years. Sadly, there are many symptoms and lots of sufferers also have other conditions on top of all this.

I hope that you have found this information useful. Please help me by telling others, especially medical professionals about FND. It’s so important that everyone gets the help and support they need! It is working and help is out there. My readers will know how much my 5 week rehabilitation helped me but I had to wait 5 years to get that help. In that time, I had been surviving, not living. This can’t go on people need the opportunity to get treatment sooner.

Throughout the day tomorrow, Friday 13th April, we will be sharing vlogs, blogs and all sorts. Please help us by sharing, retweeting and using the hashtags: #LetstalkFND #NotFakingIt.

Thank you in advance you lovely lot 😙

Charlotte xxx

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Listen to your heart, it knows …

I have been thoroughly enjoying the holidays. No alarm is bliss. I have been busy sorting things up in Scotland ahead of our move in July. I have even managed to get my assessments finished today. My health has been really good and I’m pleased to say that I haven’t had a seizure for 15 days! That’s the longest time since being diagnosed in 2013 which is just totally amazing.

I have met one of my 3 month goals that I set at the end of my FND rehab in January. I have started running again ☺ only short distances but last year, even if I tried to run for a few minutes, I would have a seizure or faint. I love it. Yes, I feel absolutely exhausted after running but this is followed by an amazing feeling of euphoria. The running makes me feel like me again. I’m a long way off but my 6 month goal is to run 3k. It’s not a huge distance but for me, after how ill I have been, it’s a massive achievement.

I am meeting with the Multi disciplinary team at the hospital next Friday. They’ve asked me to be a case study for the rehab programme which will be used to educate other professionals to tackle patients with Functional Neurological Disorder. I am honoured to be part of it. I was very lucky to have the opportunity and if they can teach other hospitals to help others with this condition, that’s fantastic.

Unfortunately, many patients diagnosed with FND are often left to get on with it. They are given the diagnosis and sent packing. This was true for me. I have pretty much been left to suffer on my own for the past 5 years. It’s only because of constant research and determination, I was finally given a treatment that worked. This rehabilitation can really make a difference and I’m so pleased that they’re teaching others to help people with FND.

This is the first time in a long time that I feel optimistic about the future. I am finally getting better and we are taking a big step to try and make our lives better. Exciting times lie ahead.

Thanks for taking the time to read my story.

Charlotte xxx

Recognising the triggers.

Life is a funny thing. Who knew that each and every thing that we experience leaves an imprint on our brains forever. This is becoming more and more apparent to me as I learn more and understand more about my neurological condition.

My health has been quite good this week and despite being fairly busy, I have managed to control my symptoms. Hence why I felt so ‘miffed’ when my symptoms started rushing in this afternoon. I felt so awful, my legs and arms froze and my nerve pain shot through me. Then, I realised why. Earlier in the day, I read something that triggered something within me. I hate that even after everything I’ve been through, I can let certain people’s petty behaviour have an effect on me. After analysing what I was experiencing, I realised that although this person is of no real relevance to me, they have in fact been triggering the same emotions that I felt all those years ago. They’re making me feel useless, not good enough just as I had been made to feel back then.

As a result of the trigger that I experienced, this set of my brain’s faulty emotions centre, telling me that I was under attack and as a consequence I became ill once again. As horrible as this all is, this ‘awakening’ I have experienced today is quite a triumph.

Over the past 5 years since being diagnosed with FND, I have often been angered and frustrated when my symptoms suddenly explode. The difference today is that I am finally understanding why they are occurring. This is quite a breakthrough and although I was initially caught of guard today perhaps, if I recognise the triggers earlier I will be able to use my tools to prevent them.

All of this knowledge and understanding would not have been possible if I hadn’t attended the Functional Neurological Symptoms rehabilitation. I really feel that by educating patients, you are essentially empowering them to be their own. healer. I am still a long way off from a cure but I now have the opportunity to manage my illness much better. All of this is giving me a better quality of life.

Thanks for taking the time to read my story. If you have any questions, I’m more than happy to help. I am by no means medically trained but I am always happy to share what helps me.

Charlotte xxx

Back on track #voices4fnd

The past few weeks have been rough but I’m thrilled to say that I’m back on track. The thing is my health has been crap but it has still been so much better than it was before my rehabilitation course. I am stopping most of my seizures and the ones I can’t are much less violent.

I have refocused myself by using the tools I have been given. I’m exercising again and have even been for a few runs, short ones, but I’m still thrilled. I have been using my CBT to challenge my negative thoughts and trying to pace myself. Unfortunately, it’s inevitable that I will over do it with my line of work. Although, I’m only contracted to work 2 and a half days, in reality I work 5. I have to mark books and plan in my own time. It’s frustrating because I love my job but it really gets in the way of me getting better!

This Sunday is a HUGE day for Functional Neurological Disorder. We are holding a huge awareness raising day. All the charities and support groups including Friends in NEAD are making videos, 7 minutes or less, using the hash tag #voices4fnd . The idea is to get people talking about this very misunderstood disorder. There’s so much stigma around it and it’s about time people are educated about it! Here’s my video:

I was extremely lucky to get the help I needed at the Royal Hospital for integrated medicine back in January. The multi disciplinary team made up of neurologists, neuro psychologists, neuro physiotherapists and occupational therapists educated me on my illness. On top of that, they came together to help me begin my healing process. I know that this treatment might not work for everyone but it really is worth a shot! I spoke to one of the medical professionals today and she has invited me to be a case study as part of a conference to educate others. The conference will have attendants from all around the country. The purpose is to educate these other teams on how to treat patients with Functional Neurological symptoms. How amazing is that?!? They’re educating people from around the country to stop the stigma and get people the help they need. I’m honoured to be a part of it.

I have come across some people that feel only a privileged few get the help they need, this is so far from the truth. I have fought just like everyone else. I waited 5 years. 5 long, awful years. I got the help because I didn’t give up. I had too much to fight for. You can do the same.

The rehabilitation only works if you fully believe your diagnosis is correct. I did, it was hard for me to accept but once I did, it all started making sense.

So, I know I’m not ‘fixed’ YET but I will be and I will make it my life’s work to help as many people as I can to get the help they need and deserve. I’m back on track and I refuse to be derailed any more!

Please help me to raise awareness on Sunday 25th March 2018 by liking and sharing anything with the hash tag #voices4fnd.

Thanks so much to those that take the time to read my story. It’s you that help me on this journey in improving understanding of FND.

Charlotte xxx

Clearing my head.

I’m embarrassed to say that I have been really struggling this week. I have been totally losing the battle with my health. I hate that I’m losing my strength and embarrassed because I’m more than aware that there are many others suffering so much more than me. I’ve been completely over doing things with work and at home. I know this but to be honest, I don’t have any other choice.

I have so much to be grateful for but yet I keep bumping back in to my ‘black dog’. The thing is, I just can’t seem to break away. It’s like a dark cloud that hangs over me and as much as I try to look for the sunshine, I just can’t see it. My seizures have worsened and my pain has increased. I’m normally so proactive but I’m finding it difficult to brush things off. Normally, if someone annoys me, I can just smile through it. However, at the moment, I just can’t. I find work so hard at the moment, my concentration is pathetic and I’m constantly fighting my own body. I think I just need to STOP. Shut down and close all the doors. Focus on what really matters. If I didn’t have my boys, I really think I would just give up. It’s because of them that I will fight this.

This blip is taking longer to flick away but I’m working on it. After all, I know that I will get better. I’m stronger than this and I will win this battle! Living with FND is hard but I truly believe that there will come a time when this illness will leave me. Until then, I will just keep trying my best to live rather than just survive.

We have an exciting new life ahead. It might be a complete disaster but it could be the best decision we ever make. You never know unless you try. I’m done with the what ifs, it’s time to try the why nots! It’s scary and daunting but I know that as long as we stick together we will be okay. I am going to miss a lot of people but I have to try this change to progress. We’re never going to move forward if we stay in our current situation. We’re done with the struggle, we want to thrive and this change will hopefully give us that opportunity!

My tics are really quite funny at the moment. Last night, I kept shouting ‘Silly sausage’ 😂 I can laugh at this as it’s just a new way of my brain fixing it’s broken parts. If it was just the tics, I would be quite happy but it’s the seizures and pain that I really wish would sod off!

When I started writing this blog, I wanted to raise awareness of living with Functional Neurological Disorder. When I was diagnosed in 2013, I had never heard of it, neither had anyone else that I knew. It’s amazing how much that has changed thanks to the tireless work of the various charities linked to this disorder. The 25th March is FND Awareness day in the UK. We are going to be sharing videos all over the Internet in the campaign: #voicesforFND . So please keep a look out and share what you can!

I will always write as honestly as possible. I see myself as a mostly positive person, however, the reality is that even the most positive of people will have darker and harder days. What’s important is to talk about how you feel and that way you can work with those around you to get better.

I will continue with my work from my rehabilitation and use my ‘happy tips’ and hope to see the sunshine again very soon.

Thanks for taking the time to read my story.

Charlotte xxx

Charlotte’s little happy tips!

What a difference a week makes! Things are finally looking up for my little family. It’s still been tough as one of my close family members has been in hospital. Also, we had some very important test results for my youngest son. I have had quite a few seizures but that’s okay, I think anyone would suffer with all the stress I’ve been through. The thing is, it’s been hard but we’ve got through it. We always do. The challenges I’ve had in my past, result in me having strength even in the most difficult situations. We got through it and everything is finally on the up. My son is going to be okay and so is my sister. We worked together and pulled through.

Living with a chronic illness can change a person. Having constant pain and fatigue can really drag you down. As I mentioned in my previous post, I have started to feel quite depressed. So, I’ve spent the week being my own therapist and compiling a list of things I can do to send that ‘black dog’ away!

This list is just some ideas people can try out if they suffer with a chronic illness and are not feeling their best. This is Charlotte’s little happy tips 🙂

1) Turn the music up- I believe music can be a great healer. It channels into your emotions and can provoke tears, laughter and memories. When I feel low, I put on some of my favourite music and sing my heart out. It can be any music you like, depending on my mood, I can go from Les Mis to Oasis in a matter of minutes. Basically, whatever ‘floats your boat’. I love music and would thoroughly recommend adding it to your daily routine!

2) Weigh up the pros and cons- In CBT (Cognitive Behaviour Therapy) I was taught to recognise my negative thoughts. You write down the thought you are having, the ‘Hot thought’. Then you make a chart. Write down evidence that supports the thought and evidence that does not. Then by looking at the evidence you can work out a ‘balanced view’. This helps me to think more rationally and helps me to get rid of irrational negative thinking.

3) Positive Data Log- Some days we are so busy that we become lost in a ball of anxiety and stress. Having FND, working and being a mum can make for a pretty hectic lifestyle. When you’re having a difficult time and everything seems all doom and gloom, you can easily become focused on the negative. The purpose of the Positive Data Log is to stop and reflect on your day and look for the good things that have happened. You’d be surprised, even on the most awful days, there is always something positive that happens. I find by focusing on the positive, it takes away some of the feelings of defeat.

4) Exercise- Yes, I hear your sarcastic laugh! However, I honestly can say that it really does lift your spirits. I’m not telling you to go and run a marathon, I know that living with FND and other chronic illnesses can really limit your fitness. However, if you can manage some light exercise, even for 5 or 10 minutes a day, you will feel the benefits. You see, it’s all to do with those endorphins. They’re like happy hormones and when you exercise, they have a little party and it’s fab.

I hope you find my list useful. Once again, I’m NOT an expert or a doctor but these little tips have helped me. If I can help just a few others, then that makes me happy! That’s what it’s all about!

Thanks for taking the time to read my story.

Charlotte xxx

The black dog.

This has been an extremely challenging week. I don’t know exactly why but for the first time, I was introduced to my very own ‘black dog’. By this I mean the darkness of depression. I felt overwhelmed, suffocated and lost. I think this has been caused by a build up of a number of things. What I find so very upsetting is an onslaught of FND symptoms as a result of my mental decline.

I left my FND rehabilitation feeling so great and full of life yet since then everything seems to have deteriorated. I have been trying so hard to be my own therapist and I think I will get back on track. I am, after all, only human. Even the strongest of people can struggle when things constantly go wrong. The saddest part of it all is I’m not brave enough to talk honestly to my family and friends. I just put on my smile and keep going.

Please don’t get me wrong, this is by no means a cry for help. This is simply a blip. I am strong and I will get through this but I guess I just want people to see, just like everyone else, I can break. Things get too much and whilst trying to piece my life back together, I will most definitely meet these hard times. I think the difference now is that I’m actually recognising and understanding the emotions I’m feeling. I am so embarrassed to admit this but I think in the past I have seen depression as a weakness. I know it’s NOT in anyway shape or form. However, I think I had become so used to living two separate lives. One that I would hide and the other would be the one you would see. I didn’t know I was depressed or anxious or anything really. It’s a lot more common then I realised and quite normal to experience at some point in your life.

I have so much to be grateful for and I am blessed to have my loved ones around me. After everything I have experienced so far in this strange, wonderful thing we call life, I know that I will get through this blip.

This week coming, we will finally get answers about my youngest son’s health. This has been going on since the summer and I am looking forward to getting him sorted and well again. Also, my feet are getting better so I can begin exercising again. My seizures will lessen if I focus on pacing myself again instead of trying to do everything. Essentially, what I’m trying to say is that things will just get better. No doubt there will be many more blips on the way but that’s okay because it’s all part of this healing process.

Hope everyone is enjoying the snow and managing to stay safe and warm!

Thanks for taking the time to read my story.

Charlotte xxx

The journey begins …

On Wednesday, for the first time in 5 years, I woke up without any pain. It was an exhilarating feeling but at the same time it was alien. I have always said since being diagnosed with FND that if I woke up and felt no pain, I would think I was dead. I know this sounds extremely dramatic but I have grown so used to it, that I’d actually forgotten what it feels like to not be in pain. My body felt normal, invigorated yet I felt so strange.

Living with a chronic illness changes you. Life becomes a bit of a blur. You try to live but really you’re just surviving. When I woke on Wednesday morning, I felt for the first time in such a long time that perhaps, I can start to live again.

Sadly, it only lasted for a day. My brain decided to remind me that it’s not finished processing just yet. I have now developed tics over the past week. I can only describe them as Tourettes type tics, it’s an uncontrollable urge to make loud noises. I can’t help but laugh but at the same time, I’m quite worried. So far, it’s only happening in the evenings and apparently during sleep. I hope it doesn’t develop any further. On the plus side, I have had only one seizure in the past seven days. This was brought on by pain as I have been suffering with two sprained ankles. It’s been quite a nightmare but thank goodness, they’re finally improving. Normally, I would have had many more seizures so it shows me just how far I’ve come.

I am continuing to be my own ‘therapist’. I have a lot to work through. You can’t fix a lifetime of problems in just a few weeks but I’m constantly making progress. I have been using the CBT to work through my negative thoughts.

My poor boy is still suffering health wise and I’m trying to stay positive but I seem to always blame myself. The CBT helps me to challenge negative thoughts by balancing the argument inside my head. It’s basically writing down the things that support my negative point of view and things that don’t. It helps you to come to a conclusion and think in more of a rational way. It’s still a work in progress but it helps a bit. I’m keeping focused and looking at all the good things that are happening instead of pining on the bad.

I will say this, I’m not broken or damaged anymore. I am on a journey of healing and I hope that my story gives others the strength to begin theirs.

Thanks for taking the time to read my story.

Charlotte xxx

A change is ‘aFOOT’

I have had a very productive week and can now reveal that I’m moving to Scotland this summer! I have spent the week looking at jobs, houses and schools for my boys. It’s been exhausting but I am pleased to say that my health has been okay despite having a sprained foot. I even got a chance to raise awareness of FND and N.E.A.D at the local hospital! (Every cloud has a silver lining)

It’s a huge decision to make this move for my little family but it’s a real chance for us to progress. I have been renting privately for 18 years now and I want to get on the property ladder. Unfortunately, that’s pretty much impossible for us in our current situation. Of course, it’s a worry in terms of managing my health but I am planning on getting in contact with a specialist in Edinburgh.

Despite being in a lot of pain with a sprained foot, I have only had one seizure and three lots of paralysis which is fantastic. I have managed to stop several seizures using distraction techniques and even went in to a large supermarket TWICE with no collapses. I was making great progress with my fitness but unfortunately, I sustained the injury so I am just walking until it is healed.

I am feeling much more positive since completing my FND rehabilitation. I have the opportunity to reflect on my negative thoughts that enables me to think in a much more rational way. I want to try and help others and if anyone reading this has any questions, I am more than happy to help. Of course, I’m not a medical professional and what works for me, may not work for everyone. However, I honestly believe if you have determination and are willing to go through a lot of hardship, you too could have some improvement.

Below are some distraction techniques I have started to use:

1) Choose a number between 100 and 900, then chose a number to count backwards in. Try to chose tricky numbers so you really have to concentrate. Even better, get someone else to give you the numbers.

2) Choose a colour or get someone to give you a colour and find 5-10 objects that colour.

3) Try thinking of a subject, i.e. animals, rock bands, anything really. Then think of something from that subject for each letter of the alphabet. So just say the subject is animals, start at ‘A’ Ape, then ‘B’ Bear and keep going till you have fully distracted yourself.

The reason I was told that these work is because FND and NEAD are caused by your brain sending incorrect signals. If you try to distract your brain rather than concentrate on your symptoms, it can prevent them from happening. It doesn’t always work. I am lucky that 80% of my seizures give me warning signs. I become spaced out or I get tingling in my face and arms. As soon as I become aware of these symptoms, I begin my distraction and around 7 out of 10 times it works!

I’m back to work and back to reality on Monday and I’m looking forward to implementing all that I have been taught in occupational therapy. Hopefully, I will be able to manage my fatigue better and won’t find work so difficult!

Thanks for taking the time to read my story.

Charlotte xxx

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