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fndandmecom

Living with Functional Neurological Disorder.

Month

October 2016

Back to reality …

I have had a great week with my lovely boys. Although my health isn’t good I have managed to pace myself by having rest days inbetween each activity. I’m lucky that they understand how my illness works. My eldest son is turning out to be quite a wonderful, compassionate human being. He constantly looks out for my well being, he knows when I’m not good and always reacts accordingly.

This week has really got me thinking about the affects of my illness on my children. I constantly worry that they’re are unhappy or that my illness ruins their lives in some way. However, because of their ages and their maturity they’re able to discuss their issues and worries. They often reassure me that they’re extremely happy whether be it through their actions or during our little chats. As I said to a fellow sufferer this week, parenting doesn’t come with a manual. All we can do is love them beyond measure and try our best! 

I am physically and mentally exhausted (the joys of living with FND ) . Despite feeling this way, I carry on. Many lovely friends and family members often say to me that they ‘don’t know how I do it’. If I’m honest, neither do I 😥. I think it’s just a matter of having to! Some days I really want to give up. The constant pain and exhaustion become too much. I dread the possibility that one day I may wake up and not be able to walk, I can’t let this happen but it can to sufferers of Functional Neurological Disorder. It really is time that more is done about this life destroying illness.

At the start of next year, alongside a fellow blogger and FND sufferer, I am planning to do a social media type of awareness raiser. I am also planning some different fundraising events. I want to make a difference. The thought of anyone else, especially children, having to live like this makes me sick. Hopefully, eventually more will be done to make living like this more bearable!

It’s back to work and back to reality next week. Hopefully, my body won’t let me down!

Thanks for taking the time to read my story . 

Charlotte Xxx 

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Somewhere over the rainbow. 

I am a true believer that life is one big learning journey. We never have all the answers and there is definitely no instruction manual. We are essentially ‘making it up as we go along’.
One thing I have learnt since being diagnosed with FND is to understand my limitations. I used to be able to work morning till night and although I was tired there was never any severe consequence as a result. Things are very different now. 

Yesterday, I had a lovely catch up with some work colleagues. We all agreed that the profession we are in is extremely demanding, I am starting to come to the realisation that perhaps for me with my chronic illness it is TOO demanding. It breaks my heart, I have tried, my god have I tried! However, there’s only so much you can try before you realise that actually your health has to come first.

Today is the start of half term, a week to recuperate. Sadly, I now see that this isn’t long enough. My family have watched me deteriorate over the past few weeks. I sit here today in an awful mess. I woke to several seizures in a row, burning and electric shock like pain shooting up my legs. This isn’t living. My children have suffered enough and so have I.

In the long run, I can look back with gratitude for the chances I have been given. I recognise that despite all my health issues, I haven’t given up. I have taken chances and tried my best. This is not a defeat it’s a new challenge. This is me listening to and understanding my body. I need to rest, in reality, I will never rest in my current position. 

I have a lot to consider and a lot to change. Knowing that I have the love and support of my little family means the world to me. They need me as much as I need them. If things change then this can be possible. No more suffering, no more pain. 

Thank you for taking the time to read my story. 

Charlotte xxx 

Smile and the world smiles with you. 

It’s been another hard week as I’m sure it has been for many! The only thing I can do is smile. Yes, I have struggled with my health terribly. Yes, I have had to deal with pain and heartache. However, I’m still here and I’m still standing  (just 😷) . What could I possibly have to smile about? Well, where do I start? 
I have been so extremely ill but have been surrounded by love and care. I have had to go through some intense interactions but I have been supported and listened to. I have been caught in difficult situations but have been shown compassion and help. So, yes in a strange way, despite my suffering I can still smile. I am happy to know how loved and supported not just me but my family really are!

I wish sometimes I could be a stronger person but in reality, I am only human. As I sat on my son’s bed this morning I saw him sleeping peacefully. My body was on fire, I felt exhausted beyond explanation and my head throbbed. I cried. Not because I am unhappy but because I don’t want my illness to beat me or destroy me. Watching him sleep so peacefully, I wept for my life before FND. I have so much to live for. My wonderful boys, Mr Right and my other close family and friends. I know that I’m deteriorating and I MUST listen to my body. I let my tears flow and took a deep breath and decided that today, like so many other days, I will fight. Why? Because I have no other choice!

I am really looking forward to a nice, restful weekend with my little family. Rest and recuperation is my only plan. I hope that my fellow FND sufferers keep up the fight. There is always hope that one day our pain will ease but until then, let’s keep spreading awareness in the hope that one day someone might find a way to help!

Thanks for taking the time to read my story. 

Charlotte xxx 

Counting sheep.

This morning, I have taken part in a questionnaire about FND and sleep problems. It’s a study put together by a lecturer at the University of Leeds. The wonderful people at FND Action put a link up on social media. 
This has really got me thinking about the affects of sleep on your health. According to the National Sleep foundation  website at:

at https://sleepfoundation.org/media-center/press-release/national-sleep-foundation-recommends-new-sleep-times 

The average adult needs at least 7 to 9 hours sleep. In reality, not many adults I know get that much sleep ever!

In the past I had never really had any problems with my sleep but since falling ill, I have noticed a growing problem. Quite often I have seizures through the night which obviously disturbs my sleep. It takes me on average an hour to fall asleep. When I eventually go off to sleep I find that I constantly wake up for one reason or another. I often have a lot of pain in my head and around my body so when I lay down, I become more aware of this.

The purpose of the study is to find out how sleep is related to symptoms experienced in FND. They are hoping to find new ways to make living with FND  a bit more bearable. So fingers crossed. 

Any research that can help make a difference to chronic illness is always a good thing. For now all we can do is try our best to make the most of our lives. Stay strong and keep up the fight. 

Thanks for taking the time to read my story. 

Charlotte xxx 

The spiral …

Lost, caught in a storm. Which way is the right way? Is there a right way?

Pain. Pain thrives to consume every last inch of you. The burning, the tremors. Complete and utter exhaustion. Exhaustion beyond words, beyond any description. 

Realisation. An opening of your eyes for the first time. Your body screaming out and saying enough is enough. 

Deterioration. Slipping away from reach. Your health evaporating like an untouched mist.

The spiral of Functional Neurological Disorder. Losing the battle again.

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