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fndandmecom

Living with Functional Neurological Disorder.

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

Standing on a line.

Sometimes I think to myself that I should just ‘bite the bullet’ and give up. Stop fighting and give in. That would definitely be the easy option. So, why don’t I? The reason I keep going is quite simply, I have too much to live for!

I refuse to accept that this is it, this is my life and that’s it. I am confident that there’s still so much more to come. I WILL beat this illness, I WILL get my life back. It’s not a case of ‘if’, it is a case of ‘when’.

Yesterday, I had another counselling session. These sessions are so ‘eye opening’ for me. Realising and understanding that what I have been through in the past is definitely not normal. It’s traumatic. I have been to hell and back and although I didn’t realise before, this trauma has caused my brain to shut down. I can now see how this damage could have led to Functional Neurological Disorder. 

When my symptoms first began I was in probably the best I had ever been. I was happy, stable and supported. Little did I know that my past would come back to haunt me in a way I could never imagine. My counsellor has helped me to see how this could have led to the development of FND.

My hope is that if I gradually try to ‘deal’ with this trauma perhaps this will aid my recovery. I know it won’t be an easy road. God knows I’m already experiencing repercussions of bringing all of this closer to the surface. However, I truly believe if I continue to leave these thoughts and feelings, I will never be able to recover. 

All I can say is ‘bring it on’. This journey is hard and unforgiving but I can’t and won’t give up. I have been referred to a specialist for treatment of trauma. I’m not sure if I will be eligible for it as my condition might not be ideal and it could make me more poorly. Fingers crossed, I can have it and it helps.

Thanks for taking the time to read my story. 

Charlotte xxx

Hold On, Pain Ends

This week has been so hard. It’s what I would call a ‘failed’ week. I became so disheartened after doing so well the previous week despite the intense heat. I feel that perhaps this week has been a continuous repercussion.

My body and brain are distressed but somehow I have managed to function albeit for only the latter part of the week. I, once again, made the silly mistake of thinking that I just might be getting better. Only to be severely punished for trying to live a ‘normal’ life. I try to forget that I am ill, I don’t want FND to win and try to convince myself that it won’t. However, this week my battle was in vain. 

I have suffered 3 lots of total body paralysis in the past two weeks. It’s been horrific to say the least but this has happened in bed at least. On Wednesday morning on the way to work my left arm lost all feeling and became limp. My lovely friend at work could tell I was in a bad way and insisted on me going home. Thank goodness I did. My arm stayed paralysed the whole day and I went on to have several non epileptic seizures throughout Wednesday and Thursday. I was in a bad way. The pain I have experienced has been indescribable. 

My neurologist is concerned about my circulation and sugar levels and therefore has run some blood tests and nerve related tests. There’s a chance my brain disorder is causing problems with my levels so they want to rule out any other problems. 

Once again, my amazing Auntie and Uncle have been there to help me out. Also, I have been shown such kindness and compassion from my work colleagues that I was able to pull myself out of the spiral of darkness I was falling into. I managed to teach yesterday morning and then attend my son’s sports day. This was truly a miracle. I know it sounds very dramatic but if you had seen the state I was in on Thursday evening, I think you may agree.

I am not where I want to be. It’s so frustrating having to constantly fight your own body. This isn’t what I had planned. My boys deserve so much more than this and it breaks me apart not being able to provide for them the way I should. 

Unfortunately, as much as I try to stay positive sometimes I have to just let myself feel this way. It can be so hard and so lonely and just incredibly exhausting living like this everyday. The one thing that FND can’t take away from me is hope.

That magic word, hope, keeps me strong and optimistic. I have so much to live for and know that one day this dark storm will pass and I will arise from the other side a stronger person. 

Thanks for taking the time to read my story. 

Charlotte xxx 

The picture used is not mine I borrowed it from the following:

file:///storage/emulated/0/Download/maxresdefault.jpg

On to a winner. 

What a week! It’s definitely been a scorcher! However, I am thrilled to say that I have coped really well 😊

This time last year when the weather became hot I fell really poorly. All of my usual symptoms were exacerbated and I ended up in hospital. I’m really proud of myself for how well I have been this week despite being extremely busy and dealing with the extreme temperatures. I may not be better yet but I’m definitely getting there. I have lasted all week and didn’t have a seizure until last night (Thursday).

Last week, I started my first counselling session with a psychologist. It was extremely intense but strangely enlightening. My psychologist is fantastic. She’s taken the time to read up on Functional Neurological Disorder and understands that it is a neurological condition that causes physical symptoms. She has also seen how emotional trauma has contributed to me falling ill with FND. 

Yesterday, it was my second session. I discussed how much it has helped so far to just be able to ‘off load’ all of the terrible things that I am constantly carrying around. My psychologist believes that I am also suffering from Post Traumatic Stress Disorder  (PTSD). She believes that this may have triggered the FND and sent my brain into disarray causing my physical symptoms. I personally found this quite hard to process but it does make sense. She said that I need to step back and look at what I have been through, it’s not normal and it’s not minor. It’s real trauma. Hopefully, by finally facing up to it and letting go of all of the guilt I have, I might help myself to heal some of the damage my brain has gone through. 

It’s still early days, but I really feel that I’m getting somewhere with this counselling. Having to talk about all the awful events I have been through is incredibly hard and is causing a tornado of emotions but if I continue to trap it all inside I will have no chance of getting better.

I’m going to continue to fight against this illness and I’m willing to try anything that might help. So, as I always say ‘Onwards and upwards’.

I have appealed against the DWPs decision on my PIP assessment so I just have to wait now.

Thanks for taking the time to read my story. 

Charlotte xxx 

Climb every mountain. 

I have had a lot on my mind lately. Recently, I attended a PIP assessment which was quite a horrific experience and surprise, surprise they turned me down claiming that I am not (in their eyes) disabled. My god, how I wish they were right! 

Apparently, spending each and every day in constant pain and exhaustion is ‘normal’. My seizures that are completely out of my control are ‘normal’.

I would never wish this illness on anyone but I would really like one of these assessors to spend just one week with me. I would like them to see how most mornings when my alarm goes off, I sob at the thought of dragging my body out of bed. I would like them to see the times that my brain ‘forgets’ to tell my legs to work and I’m literally paralysed from the waist down all whilst trying to convince my 10 year old son (and myself) that ‘everything is going to be fine’. I would like them to see/feel the crippling pain in my head and my drooping and twitching face. The seizures that make my whole body feel like it’s on fire and drain away the miniscule amount of energy I have. The constant, relentless pain that I just have to live with every single day. 

It all sounds very dramatic but sadly this is my reality, this is my ‘normal’ yet Mrs May and her ‘wonderful’ (sarcasm just in case you didn’t know 😂) government believe that I’m absolutely fine and dandy. 

Yes of course, I am lucky that I can still work but my family are in severe financial difficulties as a result of me being unable to work full time. The assessment made me feel like a fraud. Having to prove to some snotty (sneezing and not washing hands) medic that I am ill just seems so derogatory and humiliating. There’s not a lot I can do, I could appeal the decision but what’s the point? I know that I am ill as do my family and friends. I don’t have any fight left in me. 

I will try my best to focus on the positives. My family and friends are amazing. Thanks to the work of charities like FND Action and doctors who specialise in FND awareness is growing each day. The more that they learn, the more chances we have of reducing symptoms and making life more bearable. Perhaps one day, one of these ‘assessors’ will experience just how absolutely awful FND can be and then they will finally recognise it as a disability. 

I will continue to live in hope that one day I will be well again. 

Thanks for taking the time to read my story. 

Charlotte xxx 

Sometimes you have to ride the storm …

Living with FND and chronic illness can be cruel. You feel constantly exhausted and even when you do get the chance to rest, your body goes into fight mode. 

I have just started my half term. Luckily, I don’t have too much work to do. However, my health is suffering and my symptoms are definitely worse. I don’t know if this is personal to me but whenever I finally get the chance to stop and rest, my body goes into shut down. It’s like all the seizures I’ve managed to stop (through meditation /neurophysio) come crashing towards me. My pain is 10 times worse even though it’s bad enough normally. 

I honestly believe that if I was to stop working completely, this illness, this ‘disorder’ would totally consume me. It’s as if when I stop and I’m not working, it gives Functional Neurological Disorder a chance to take charge. My brain has more time to mix up signals and attack my nervous system. 

Feeling like this makes me want to give up. I just can’t win. My body is in disarray. I still feel incredibly exhausted despite having a long, deep sleep. I’m freezing inside and have goosebumps on the outside yet my body is sweating. It’s like I have a complete computer malfunction. It’s days like this that I wish my neurologist or doctors could see. Maybe if they spent a week with me, they could start to understand what a struggle it can be.

I hear all too often, from fellow sufferers, that they’re told that this illness is ‘all in their head’. In a way it is but not psychologically but physically. FND is a malfunction of the brain. Believe me, the symptoms we experience are far from ‘make believe’. You can find better detailed descriptions at :

Fnd Action website

neurosymptoms.org 

So please, before you judge, try to understand. 

We will continue to work together to raise awareness of FND through as many ways as possible. 

My partner, who I fondly call, Mr Right is running the Beachy Head Marathon on October 28th to raise money for FND Action. The more money we can raise, the better the chance we have of getting the best possible care for sufferers of this horrible, life changing illness. 

https://www.justgiving.com/fundraising/Maxwell-Graves-FND-Action?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Maxwell-Graves-FND-Action&utm_campaign=pfp-share
Thanks for taking the time to read my story. 

Charlotte xxx 

It doesn’t rain but it pours!

It doesn’t rain but it pours. I am well aware that we all go through ‘hard times’ and can empathise with others who suffer. However, I really start to wonder if my family have been cursed! 

Each week seems to bring yet another hurdle. It never seems to get any easier. Don’t get me wrong, I’m forever grateful for the people we have around us. I am thankful for being able to just about cover our bills and keep a roof over our children’s heads BUT our luck just seems to get worse and worse. 

Last week was a tough week. I had a busy working schedule and lots of hospital appointments. On top of that, I found out that my youngest son, who is only 10 has significant hearing loss. 

Following on from last week, I have been suffering with more seizures and pains. This has made work so much harder. Then to top it off, on Thursday morning, I had a really important appointment which put me under a lot of stress which exacerbated my symptoms. After that, I arrived home to find my eldest son in agony. He was rushed into hospital with suspected appendicitis 😕 

After 3 days in hospital, they finally let us home. It turns out he has a gastric virus. I was relieved it wasn’t as serious as we first thought. The kindness and support we have received from everyone around us has been so touching. We really are blessed. 

My little family are going through a very hard time. However, we won’t let it beat us. We stick together and with every obstacle we just become stronger. 

Sending anyone who takes the time to read this strength and durability. We all go through these tough times but it’s how we deal with it that determines the outcome. 

Thanks for taking the time to read my story. 

Charlotte xxx 

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