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fndandmecom

Living with Functional Neurological Disorder.

Month

August 2017

A new journey.

On Friday, I finally attended my assessment for the FND clinic at The Royal Hospital for Intergrated Medicine linked to The National neurological hospital at Queens Square. The clinic is a multi disciplinary team of neuro psychologists, physiotherapists and occupational therapists. I was lucky enough to meet the head of the team. She is a specialist in Functional Neurological Disorder. 

It makes a real difference to speak to professionals who actually understand how FND works. We spent well over an hour discussing my life and how FND effects me everyday. We went right back to my childhood and looked at aspects of my personality. After that we looked at the causes of my PTSD. It was agreed that there’s a possibility that the trauma I experienced could have led to me developing my symptoms. 

Following our discussion, the doctor explained what they can offer me. They offer a 5 week rehabilitation course. This consists of treatment from all members of the team working together to help me deal with FND. I have to go to the hospital twice a week throughout the 5 weeks which is going to prove quite difficult in terms of organising the children. However, despite how hard this is going to be, I really feel that I need to give this a shot!

The doctor suggested reading a book called ‘The body keeps the score’, I have ordered it today. It basically discusses the brain as a processor and how trauma can attack the way the brain functions. 

I’m thrilled to say that my youngest son is finally starting to look and feel better. It’s likely that he had something like glandular fever and hopefully he is ‘out of the woods’. My eldest son had an amazing time in France with his friend’s family. I’m so pleased to have my family all together and plan on resting up and enjoying what’s left of the holidays. 

I start my psychotherapy this week which the neurologist at Queens Square said is a fantastic start. I have one hell of a journey ahead of me but I’m hoping this is all going to work towards a better life for me, Mr Right and my amazing boys!

Thanks for taking the time to read my story.

Charlotte xxx

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Make the most of each moment.

I’m very lucky to be spending some quality time with my family this week. I love family time and can’t get enough of it. Unfortunately, my health isn’t great but at least I’m surrounded by people who care about me and love me.

I wait in anticipation for my appointment at the FND clinic next week at the National neurological hospital. It’s probably nothing worth getting excited about but I guess for someone like me, we always have a glimmer of hope. 

Sometimes, I just try to stand back and assess my situation. I live each and every day in pain. It’s constant and relentless but sadly I think I have actually become ‘used’ to it. I think that perhaps this is now my normal. Those who are close to me will hopefully see me as a kind and caring person, maybe even quite laid back. This is who I choose to be. I refuse to let this awful bloody illness turn me into a nasty, bitter person. I’m absolutely nothing special but I aim to be the best person I can be in my situation and the best mum for my wonderful  boys. 

When I arrived to visit my parents, I had a seizure within a couple of hours. Understandably, they were quite upset but for me these episodes are just part of my everyday now. The question is, should they be? Should I have to live this way? Let’s hope that eventually I won’t!

I’m hoping for more support from the FND clinic. Hopefully, they can show me ways to deal with this illness better so that each day doesn’t have to consist of constant suffering. 

I want to try my best to enjoy this special time and not let FND ruin it. So here’s hoping for more of the ‘good’ days and less of the ‘bad’.

Thanks for taking the time to read my story.

Charlotte xxx

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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