Living with Functional Neurological Disorder.


April 2017

New horizons. 

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 

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