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fndandmecom

Living with Functional Neurological Disorder.

Month

August 2017

Time to heal.

I’m taking some time to heal. Even the healthiest of people need to take some ‘down’ time. My FND symptoms have exploded due to having spent the past two weeks in and out of hospital with my youngest son. I’m hoping and praying that he is finally on the mend after being sick every night for 13 days in a row, last night he was sick free.

I’m thankful that my ‘mummy-power’ well and truly kicked in and that I have been able to mostly be there for my son. It gave the nurses on the night shift in the children’s ward an eye opening experience of Functional Neurological Disorder. I guess that’s one way to raise awareness 😂

Now that we are home and my son is hopefully on the road to recovery, I can give my body a chance to recover. My pain is through the roof and it feels as though my head might explode. I’m having numerous seizures without any warning /build up. However, this is all to be expected. What really matters is that my body didn’t let me down when I needed it most. My son needed his mum and I was able to be there for him.

I have received my first appointment for the FND clinic at the National Neurological hospital in Queens Square. I’m not quite sure what to expect yet but I have high hopes that they will be able to help me find ways to improve my life. 

I am continuing to work on my PTSD and gaining a better understanding of the reasons behind the way my body reacts to trauma. It’s all small steps but better small than not at all!

The summer holidays so far have been absolutely bloody awful. I’m hoping now that things will start to improve and my little family can finally enjoy a well deserved break together! 

Thanks for taking the time to read my story. 

Charlotte xxx

Things can only get better!

I often feel like I’m constantly living an episode of Eastenders. My life seems to fly from one drama to the next. Honestly, the things that can be thrown at my little family in just one week couldn’t be made up! I guess that all these challenges are a test of our strength but even so sometimes I do think that we may have been cursed.

Please don’t get me wrong, I am under no belief that our dramas are any harder than anyone else’s. I am fully aware of the hardship that we can all face at times! However, it really gets ridiculous when yet another problem crops up. 

We are just into our second week of the summer holidays and so far it’s been quite a ‘flop’. My FND symptoms have been all over the place. I’ve experienced a mixture of seizures, constant burning pain and temporary paralysis  (thrown in for good measure). Then to top it off, my youngest son had to be taken to hospital in the early hours of Tuesday night 😕 It turns out that he had a blockage in his bowel and they had to give him medication to get everything ‘flowing’ again. He was amazingly brave and I couldn’t be more proud of him. It was all just an awful experience! 

It may sound ridiculous but I actually get embarrassed sometimes. I’m embarrassed by all the drama. It can almost seem unbelievable, half the things that happen to us! It was only a month ago my oldest son was in the same hospital with suspected appendicitis. I guess what I’m trying to say is; enough is enough. When will our break come? When will things get better? We keep saying these things but it’s not getting better and we are definitely not getting a break. 

I don’t like to be negative and always try to look on the bright side but sometimes it’s almost impossible. I have to give myself a proverbial kick up the bum and I will. However, I have to have a bit of a moan from time to time. At the end of the day, I’m only human and whereas I am happy to take on whatever this crappy illness throws at me, it’s a whole different story when it comes to my children!

I watched a documentary earlier today about a girl of only 22 who has Motor Neuron Disease (MND). This is extremely young to get this life limiting illness. She was so strong and amazing despite being given only 3 years to live. She is determined to live as much as she can and is a real inspiration. This young lady also writes a blog. During the documentary, she said that writing her blog helps her to think through things and process her situation. I think she’s so right.

 Some may see this blog as quite self indulgent. In some way, it may be. At the same time, I write this blog in the hope that people can learn about the affect of living with a chronic illness like FND. When I was diagnosed in August 2013, I had no knowledge of the existence of Functional Neurological Disorder. Today, I hope that those that are kind enough to take the time to read my story have a better understanding and in turn are educating others. 

It can become incredibly lonely living with chronic illness. It’s hard for others to understand what each day can be like. That’s why I choose to be a voice. Not just a voice for me but a voice for others living with this every day. 

Here’s to hoping for better days for anyone reading this. As D:Ream once said, “Things can only get better!”.

Thanks for taking the time to read my story.

Charlotte xxx

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