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fndandmecom

Living with Functional Neurological Disorder.

Climb every mountain.Β 

I have had a lot on my mind lately. Recently, I attended a PIP assessment which was quite a horrific experience and surprise, surprise they turned me down claiming that I am not (in their eyes) disabled. My god, how I wish they were right! 

Apparently, spending each and every day in constant pain and exhaustion is ‘normal’. My seizures that are completely out of my control are ‘normal’.

I would never wish this illness on anyone but I would really like one of these assessors to spend just one week with me. I would like them to see how most mornings when my alarm goes off, I sob at the thought of dragging my body out of bed. I would like them to see the times that my brain ‘forgets’ to tell my legs to work and I’m literally paralysed from the waist down all whilst trying to convince my 10 year old son (and myself) that ‘everything is going to be fine’. I would like them to see/feel the crippling pain in my head and my drooping and twitching face. The seizures that make my whole body feel like it’s on fire and drain away the miniscule amount of energy I have. The constant, relentless pain that I just have to live with every single day. 

It all sounds very dramatic but sadly this is my reality, this is my ‘normal’ yet Mrs May and her ‘wonderful’ (sarcasm just in case you didn’t know πŸ˜‚) government believe that I’m absolutely fine and dandy. 

Yes of course, I am lucky that I can still work but my family are in severe financial difficulties as a result of me being unable to work full time. The assessment made me feel like a fraud. Having to prove to some snotty (sneezing and not washing hands) medic that I am ill just seems so derogatory and humiliating. There’s not a lot I can do, I could appeal the decision but what’s the point? I know that I am ill as do my family and friends. I don’t have any fight left in me. 

I will try my best to focus on the positives. My family and friends are amazing. Thanks to the work of charities like FND Action and doctors who specialise in FND awareness is growing each day. The more that they learn, the more chances we have of reducing symptoms and making life more bearable. Perhaps one day, one of these ‘assessors’ will experience just how absolutely awful FND can be and then they will finally recognise it as a disability. 

I will continue to live in hope that one day I will be well again. 

Thanks for taking the time to read my story. 

Charlotte xxx 

Sometimes you have to ride the storm …

Living with FND and chronic illness can be cruel. You feel constantly exhausted and even when you do get the chance to rest, your body goes into fight mode. 

I have just started my half term. Luckily, I don’t have too much work to do. However, my health is suffering and my symptoms are definitely worse. I don’t know if this is personal to me but whenever I finally get the chance to stop and rest, my body goes into shut down. It’s like all the seizures I’ve managed to stop (through meditation /neurophysio) come crashing towards me. My pain is 10 times worse even though it’s bad enough normally. 

I honestly believe that if I was to stop working completely, this illness, this ‘disorder’ would totally consume me. It’s as if when I stop and I’m not working, it gives Functional Neurological Disorder a chance to take charge. My brain has more time to mix up signals and attack my nervous system. 

Feeling like this makes me want to give up. I just can’t win. My body is in disarray. I still feel incredibly exhausted despite having a long, deep sleep. I’m freezing inside and have goosebumps on the outside yet my body is sweating. It’s like I have a complete computer malfunction. It’s days like this that I wish my neurologist or doctors could see. Maybe if they spent a week with me, they could start to understand what a struggle it can be.

I hear all too often, from fellow sufferers, that they’re told that this illness is ‘all in their head’. In a way it is but not psychologically but physically. FND is a malfunction of the brain. Believe me, the symptoms we experience are far from ‘make believe’. You can find better detailed descriptions at :

Fnd Action website

neurosymptoms.org 

So please, before you judge, try to understand. 

We will continue to work together to raise awareness of FND through as many ways as possible. 

My partner, who I fondly call, Mr Right is running the Beachy Head Marathon on October 28th to raise money for FND Action. The more money we can raise, the better the chance we have of getting the best possible care for sufferers of this horrible, life changing illness. 

https://www.justgiving.com/fundraising/Maxwell-Graves-FND-Action?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Maxwell-Graves-FND-Action&utm_campaign=pfp-share
Thanks for taking the time to read my story. 

Charlotte xxx 

It doesn’t rain but it pours!

It doesn’t rain but it pours. I am well aware that we all go through ‘hard times’ and can empathise with others who suffer. However, I really start to wonder if my family have been cursed! 

Each week seems to bring yet another hurdle. It never seems to get any easier. Don’t get me wrong, I’m forever grateful for the people we have around us. I am thankful for being able to just about cover our bills and keep a roof over our children’s heads BUT our luck just seems to get worse and worse. 

Last week was a tough week. I had a busy working schedule and lots of hospital appointments. On top of that, I found out that my youngest son, who is only 10 has significant hearing loss. 

Following on from last week, I have been suffering with more seizures and pains. This has made work so much harder. Then to top it off, on Thursday morning, I had a really important appointment which put me under a lot of stress which exacerbated my symptoms. After that, I arrived home to find my eldest son in agony. He was rushed into hospital with suspected appendicitis πŸ˜• 

After 3 days in hospital, they finally let us home. It turns out he has a gastric virus. I was relieved it wasn’t as serious as we first thought. The kindness and support we have received from everyone around us has been so touching. We really are blessed. 

My little family are going through a very hard time. However, we won’t let it beat us. We stick together and with every obstacle we just become stronger. 

Sending anyone who takes the time to read this strength and durability. We all go through these tough times but it’s how we deal with it that determines the outcome. 

Thanks for taking the time to read my story. 

Charlotte xxx 

Positive vibes.


Oh my goodness, what a bloody week I have had. I honestly believe that even a ‘well’ person would have struggled to get through this week!

I had to change my work days around as both myself and my son had different hospital appointments. So I worked Tuesday, Thursday and Friday morning. Unfortunately, my days off were all extremely busy running to different hospitals. 

My youngest son, has been experiencing a buzzing noise in his ears for the past six months and this week he had two hearing tests and then later met with an ear, nose and throat consultant. I was very surprised to discover that he unfortunately has quite severe hearing loss in his right ear and significant loss in his left ear. Initially, I started to beat myself up about not picking up on this. Honestly, I had no idea his hearing wasn’t good. His speech is perfect and his development normal. The doctors believe that he has a blockage between his nose and middle ear. They have given us a steroid spray and then he has to be retested in 3 months. Unfortunately, if his hearing doesn’t improve he will need to be fitted with a hearing aid πŸ˜• I know that our little family is so strong and we will get through this together. We’re staying positive and hope that the spray will do the job! πŸ‘

Yesterday afternoon (Friday), I met with one of my neurologists. It was a really positive consultation 😊 They’ve started a FND clinic at my hospital which I am being referred to! That’s fantastic news and I can’t wait to attend! Also, my pain has been getting gradually worse and worse. It keeps me awake all night. Normally when this happens they tend to change my medication which often results in me becoming more poorly. Thankfully, they decided to up my current meds and believe it or not, last night was the first full nights sleep I have had in a month. However, it’s early days and upping my meds will inevitably have side effects. I did struggle to wake up this morning and feel quite spaced out today. I won’t give up and I’m feeling positive that things are going to get better. 

Next week I have my PIP assessment (Personal Independent Payment). This is a replacement of Disability Living Allowance. I don’t expect a lot of help but we are struggling financially because of my illness as I can only just about manage to work 2 and a half days a week. If they allow me to have a small bit of help to cover the cost of things to help me when cooking and bathing it would be fantastic. At the end of the day, I know that having FND has been very destructive to our lives and if they don’t care that’s their choice. 

On the 23rd May, I’m meeting with an occupational therapist at my local neurological hospital in Watford for a fatigue management course. I’m hoping that she can help me with managing my fatigue better! She’s going to meet with my neuro physiotherapist and together they’re going to put together a management plan for me.

There’s so much coming up but I’m going to pace myself! On the positive side, all of these things are in place to help me and my family cope with everything with some support. Rather than trying to deal with everything on our own.

When everything seems likes it’s toppling down on top of you. When you feel like you’re drowning. Stop. Please stop. Then breathe. Close your eyes and focus on the now. Don’t worry about all the things that need to be done and all of the work you have ahead of you. Just take each little step, one at a time and smile. You can and you will get through this ❀πŸ’ͺπŸ’ͺ 

Thank you for taking the time to read my story. 

Charlotte xxx 

Burn out …

It’s been a funny week so far. I have been extremely busy with work, writing reports for the 3 classes I currently teach. Yesterday, I attended my oldest son’s parent’s evening. I was thrilled to hear how well he is getting on both academically and socially. It’s a relief to know that despite all my little family go through, my children are still able to strive and succeed. 

My younger son is away on his first school trip. He only went yesterday morning and will be back on Friday afternoon. However, I’m missing him like mad. The good thing is that he was fine when he went. In fact, he couldn’t wait. It’s great for him to have the opportunity to get away from it all. 

Unfortunately, I’m not very well at all today. I think it’s because I have pushed myself too hard. I worked all day yesterday, then left work just before 5. After that, I had to rush and pick up my son to go to parent’s evening until 8pm. I then spent 3 hours, marking, planning and writing reports. Personally, I think that’s a lot to do even for a ‘well’ person! On top of that, I have spent my day off finishing my reports. 

Last Saturday, I was unable to walk when I woke up. I was stuck in bed and had to call my partner for help. This happened another 3 times. I think this is happening more because when I become exhausted my brain ‘forgets/can’t’ send signals to my legs to move. It’s scary when you wake up and can’t move. You feel as if you have lost control of your body. All of this happens on top of my seizures and constant burning, agonising pain. Yet, nothing can be done. We are left to suffer like this each and every day. Living in constant fear of the unknown. Do you think this is right? Is it fair? If I was an animal they would put me out of my misery.

All of this is the reason why charities like FND Action are so vital and important. They fight to raise awareness and give people like me a life line. 

My fantastic Mr Right is going to be running the Beachy Head Marathon on October 28th to raise money for FND Action. I am so unbelievably proud of him. I know that there are already many other important charities around but FND has changed my familie’s lives upside down and there is so little out there to help me get through each day. So that is why he has chosen this charity, to thank them for all they do!

I need to rest now, my eyes are forcing shut which means it’s time to stop.

Thanks for taking the time to read my story. 

Charlotte xxx 

New horizons.Β 

It’s been a while since I have blogged. I’ve been busy focusing on getting through each day. My health has been up and down but I’m pleased to say that I’m having more good days than bad.

This week I met with my new neuro physiotherapist, it turns out that I actually know her. Our children went to school together. She very kindly offered to pass me to one of her colleagues if I felt uncomfortable but to be honest, I felt more at ease speaking to someone I know. 

The purpose of this physiotherapy programme is to find ways to improve my tremor and the loss of sensation in my legs. Those of you who regularly read my blog will know that since November, I have been experiencing something called frozen gait. This causes me to suffer from temporary paralysis of my legs. They turn blue and I’m unable to move them. Luckily, at the moment, this is only temporary and eventually they start to move again. I saw my neurologist back in December and he referred me to my local neurological outpatients hospital. Strangely, in my notes he had said that I was unable to walk at all. So when my physio saw me stand and walk towards her she was quite shocked! 

I’m unsure why my neurologist put that I was unable to walk in my notes unless he presumed that’s what was going to happen?!?

My assessment lasted just over an hour. We went through my medical history and discussed treatment plans. I am going to be referred to an occupational therapist who can help with fatigue management. Unfortunately, there’s little they can do to stop my legs freezing. Obviously, my main concern is that I will wake up one day and not be able to walk. This sounds very dramatic but sadly I know that this can happen with functional neurological disorder. However, I refuse to live my life in fear and anxiety. It hasn’t happened and if it ever did I know that I will get through it! My physio discussed ways to try and get my legs moving and to be honest, I was already doing what she suggested. 

Overall, I feel that the assessment was positive. I’m still walking, I’m still working and just about surviving. I know how very lucky I am considering my diagnosis of FND! Yes, each day is a struggle and a battle. I never know what each day will bring but I know that whatever happens, I will not face it alone. I have an army of family and friends behind me and supporting me all the way and for that I’m forever grateful. 

I am in my final term of this school year. It’s been very hard for me returning to more whole class teaching but so far I have managed it. My health has deteriorated but I’m still going. I’m very lucky to work with such an understanding headteacher. I have episodes of seizures and bad turns at work but I’m treated with respect not pity and that means a lot. It’s hard, I’m not going to lie. Teaching is such a demanding job but I love it. I just hope that I can keep going and perform to the best of my ability whilst pacing myself and making sure that I don’t over do it. 

My next neurologist appointment isn’t until next month but hopefully if things stay afloat I will be okay. I fainted on Thursday and then had a seizure. Unfortunately, I landed on my right hand. Luckily, it’s just a sprain and not fractured and on the plus side at least I didn’t bang my head for a change!

Thanks for taking the time to read my story. 

Charlotte xxx 

Just a thought …

I love to read, not on a Kindle or any digital device, I love to read books. The smell of them, the feel of them. Having the chance to ‘escape’ into a whole other world.
I don’t have much of a chance to remove myself from my illness but when I’m reading, when I become totally engrossed in a fantastic story, just for a moment, I’m me again. 

I find that I become involved with the characters. I want to know what will be, where their ending or their beginning will come. You can be transported to another dimension, away from the sometimes harsh realities of life.

There isn’t one book in particular that I can choose as my favourite, there are so many I love. One book I read recently was ‘The Fault in Our Stars’. There’s a quote that sums up so much for me from this story and I would like to finish this short blog with it. 

‘That’s the problem with pain, it demands to be felt’ John Green.

Time to shut down …

As I drove away from my workplace on Friday afternoon, I began to cry. These were not tears of joy or sorrow. These tears that fell were tears of relief. I made it, only just but I got there. It was finally the end of term. 

It becomes increasingly hard to stay positive. Trying to believe that all of this pain will go away. You tend to feel that you’re wishing your life away. You’re weary at the thought of how tired you already feel when you wake on a Monday after two day’s rest. Despite all this, you keep plodding on. Why? Because it’s all you can do. 

We are barely surviving financially on my part time wages, even though I work 5 days I only teach 2 and a half. That’s the joy of my profession. If I was well enough to work full time we would be much better off but I am already pushing my body too much both physically and mentally. I hate that my FND continues to ruin things every day! 

I need to rest and recuperate over the next couple of weeks. We are heading to Scotland tomorrow to spend some time with my parents. I’m really looking forward to ‘shutting down’. I have a great need to eliminate any feelings of stress and to just completely relax. Focus on my boys and nothing else. 

I am going to make the most of everything. Having the chance to wake up naturally, having no alarm, it’s pure heaven. Also, having no set schedule and taking each moment as it comes is a rare opportunity. I plan to rest, meditate (good to try something new ;)) and heal as much as I can in the time I have.

Thank you for taking the time to read my story. 

Charlotte xxx 

Look for the positives.Β 

I am thrilled to see how much awareness was raised by FND Action yesterday during the FND Awareness Day 2017. They’re truly amazing and compassionate, they all worked really hard and it paid off. They even had two video interviews with Dr Mark Edwards and Dr John Stone, two main specialists in Functional Neurological Disorder. Below are links to these interviews:

https://m.facebook.com/story.php?story_fbid=402126683488737&id=291997261168347
These posts reached over 20,000 people and helped those who didn’t know about FND. A huge thank you to all of those involved!

I’m afraid I have been quite poorly, this seems to be a general pattern for me. As I head towards the end of term, I become unbearably exhausted and as a result I have more seizures and spend every waking moment in pain. Unfortunately, I had a bad turn at work on Friday. I didn’t know it was coming and if it wasn’t for my lovely friend at work it could have been a whole lot worse! It was all quite distressing, many people saw my seizure, normally I manage to make it to my head’s office but this time it didn’t give me enough time. 

I am extremely lucky to work with such lovely people. I feel guilty for upsetting others but sometimes, it’s just out of my control. More than anything, my pride was bruised. I’m quite ashamed to say that I was really quite devastated. Anyone who suffers from seizures  (epileptic or non epileptic) will hopefully understand why. The only way I can explain it is when I have a seizure I’m completely out of control. I’m vulnerable and not me. I’m a professional, I have worked very hard in the past to gain my career. When I fit, it’s like all of that hard work is stripped away. I become a lesser version of myself. I don’t want pity but I appreciate the kindness I am shown. I can’t change what has happened and will have to swallow my pride.

I just need to make it through to the end of term. There’s only one week left. I have had a lovely, relaxing weekend and have been spoilt by my boys for Mother’s day. Sadly, I haven’t been too well but I have been very well looked after as usual. 

Happy Mother’s Day to all the wonderful mums out there. I hope you have had a day of special memories just like me.

Thank you for taking the time to read my story. 

Charlotte xxx 

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