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Living with Functional Neurological Disorder.

Stuck between a rock and a hard place …

I’ve made it through another week. It’s been hard and my body has been in complete defiance but I made it and that’s what matters!

I had my initial consultation with the psychiatrist on Tuesday. It was quite a lengthy process, we spent well over an hour going through my history both pre FND and post. She made several diagnosis but explained that her role is mainly medication based and that she generally manages patients through anti depressants. Despite all that I deal with, I’m not what would be considered depressed or anxious. However, she believes that I may benefit from seeing a psychologist with treatment such as EMDR.

As I continue to attempt to educate myself in the understanding of what is actually happening with my body, I’m starting to see why my body has taken the score. I am beginning to see that when something traumatic happens to a person, if they have to internalise the feelings, those feelings don’t just ‘disappear’. My brain has them stored there, waiting to come to the surface. You can’t ‘trick’ yourself and carry on. It becomes inevitable that there will be a time when your brain wants to express those deep, dark emotions. 

Unfortunately, my symptoms have been worse lately. I know why. I am really pushing myself to the limit. It’s not ideal but it’s just how it is. I love my job, however, it’s not a vocation that ever really allows you to pace yourself! This week, I have had two episodes of complete body paralysis. The first time it occurred was on Sunday night. I was watching one of our box sets with my eldest son and cuddling Mr Right. As I went to sit up, I realised that I couldn’t move. I won’t lie, it was terrifying. What made it so much worse was seeing the fear in my son’s eyes. I can always reassure him that it will pass but what if one day it doesn’t? He shouldn’t have to be dealing with this. His exams happen this year and I would be devastated if I affect his chances. Each time this paralysis is happening, the length of time and the severity increases. I guess you could say that I’m stuck between a rock and a hard place. I’m too ill to work but I’m not considered ill enough to not!

It’s only 2 weeks till half term, I’m praying that I make it there. I wish there was a magic wand that I could wave to go back to before. This, however, is my ‘now’ and I just have to keep trying. I have too many reasons not to!

Thanks for taking the time to read my story.

Charlotte xxx

Please note that this image is not mine:http://www.makeroomformommy.com/rock-and-a-hard-place/

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Finding the positive.

It can feel almost impossible sometimes to look for the positives in life. There can be constant hardship thrown your way and you can start to feel lost. Life doesn’t come with a handbook but if it did, we would probably miss out on the ‘good’ bits!

It’s been one hell of a hard week and if I’m honest, it’s been a struggle! I’m finally sitting down and having a rest. Those of you who live with chronic illness would have heard of the spoon theory. 

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://amp.theguardian.com/commentisfree/2012/sep/24/spoon-theory-chronic-pain-fatigue&ved=0ahUKEwiRjaXzwLvWAhVQZFAKHWt7B7cQFghwMAc&usg=AFQjCNHRx46tg6O-zHDkol7Lqi83kPNNbQ&cf=1
The article above gives an explanation. I have most definitely run out of spoons this week and I’m now paying the price. However, if I consider how ill I am and look at everything I have achieved, I can smile (when my facial muscles stop twitching 😂) I can feel proud of myself for actually being able to go to work. I can feel proud for trying my best to be a good mum to my wonderful boys. Despite the absolute exhaustion, I have still helped them both with homework and kept them safe and fed. I have managed all of it and I can now take some time to stop and recharge my spoons!

I am forever grateful for the strength I manage to find when everything becomes so hard. My children give me this strength as do my family and friends and not forgetting Mr Right. 

So I guess what I’m trying to say is; when it seems like the world is on your shoulders and things are never going to get better, stop. Stop and breathe. Look around you and see what you have and who is there by your side. I hope, like me, that you’re be able to see those little positives and will start to realise that some how and some way, everything is going to be okay.

Thank you for taking the time to read my story.

Charlotte xxx

A smile can hide a thousand tears.

A smile can hide a thousand tears. It’s certainly not very ‘British’ to focus on the negative. It’s always about the ‘stiff upper lip’ and ‘keep calm and carry on’. The trouble is, this very British point of view can be extremely damaging.

I have been finding myself in a state of dismay. The more that I educate myself on PTSD, the more I disagree with my diagnosis. I know that I have most definitely experienced some awfully traumatic things but I fail to believe that I’m ‘damaged’ as a result. Also, I really don’t ‘fit’ into the common examples of someone suffering with PTSD. My research tends to describe sufferers as emotionally numb and unable to feel normal emotions. Those close to me know that I am the polar opposite of this.

Over the past week, I have been having non epileptic seizures in my sleep. This has always happened. However, the difference this week is that I’m not waking up. My poor Mr Right is being constantly woken up by my violent seizures whilst I lay there blissfully unaware. They’ve been that violent that I think I’ve actually given myself whiplash 😕 

I’m struggling with pain more than anything at the moment. My whole body feels like it’s on fire. It’s that painful that even my glasses hurt my face and my hair tie pulls against my scalp. It’s as if my body has become hypersensitive. This, unfortunately, is quite a common side effect of FND. What I fail to understand is how on earth do I stop this? I don’t expect it, I don’t choose it so how am I or how is my brain causing it?? 

I really wish I could wave a magic wand and make it all disappear. Sadly, I think I’m only just at the beginning of a very long journey. However, if there’s a way to get through this and get my life back, I will try absolutely anything.

It’s okay to cry when I’m on my own. The whole situation is, for want of a better word, crappy! On the outside, I will continue to smile and get through each day the best I can.

Thank you for taking the time to read my story.

Charlotte xxx

Look for the good in each day.

People really do amaze me. Each and every day, people all over the world face so many hardships. Despite all this, we pull together and we fight. I guess that’s what seperates us as a species. Our inability to give up and our strength to inevitably keep going.

In the grand scheme of things, I feel that my life and my illness are not that important. However, just like so many others, this is my life and this is happening right now. 

I am currently reading ‘The body keeps the score’ by Dr Van Der Beek. It’s a hefty read but I am making my way through it and trying to learn/understand my diagnosis of PTSD. To a certain degree, I can see some relation to what the patients in the book have experienced. What I’m struggling with is understanding how this could have led to Functional Neurological Disorder. 

Believe me, I have tried and tried to overcome the symptoms that I experience. I really hate being ill, as mellow dramatic as it sounds, some days I feel like I just want to disappear. I’m angry and frustrated by what I feel. It’s not just me it destroys. I can’t work enough to properly support my family. I’m sure some people think I’m just a lazy attention seeker. It’s so far from the truth. Those who really know the real me, know how much this is destroying me. I WANT to work and I WANT more than anything to be well again!

I have just about made it through my first week back to work. After quite a disastrous summer, I’m trying my best to pace myself. I have to wait till October to start my psychotherapy and until January for the FND rehab. Until then, I will continue to try and learn about and understand what my body is going through. I will strive to look for the good in everyday. 

Thanks for taking the time to read my story. 

Charlotte xxx

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

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

Sit back. Marvel at your life.

Sometimes it’s the little things in life that mean the most. I am thrilled to say that for the first time in 4 years, I made it to the end of the school term! This may seem quite a minor achievement but for me it means so much. It means that although I’m not ‘better’, I’m getting ‘better’. I know that I haven’t beaten FND but I’m learning how to live with it and it’s not always winning! 

I have had a busy start to the holidays, getting bits done around the house and play dates for my youngest son. My older son went off on his travels to France on Tuesday. He is a very lucky boy and although 3 weeks is a long time, I’m thrilled that he has such a great opportunity! 

My health is not great but I am trying my best to pace myself. I’m still having regular seizures and paralysis. My body is trying to process everything that is being brought to the surface and I accept that. I have a long and hard journey ahead of me but I know it’s important to deal with my demons. 

I am still waiting to see my GP for blood test results but have been too busy to go. I have booked an appointment next week for that and to discuss other things. I have been experiencing problems with circulation on my feet and I’m not sure if this is related to my FND. Hopefully, I will be able to get some answers at my appointment!

So overall, things are positive for me and my little family. I’m ill but that’s okay. I know how to deal with my symptoms and just hope nothing else pops up to get me. Fellow sufferers of FND will know how uncertain each day can be but if something else crops up, I’ll be ready to take it on.

Thanks for taking the time to read my story.

Charlotte xxx

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