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fndandmecom

Living with Functional Neurological Disorder.

Month

May 2017

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 πŸ˜• 

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 

Positive vibes.


Oh my goodness, what a bloody week I have had. I honestly believe that even a ‘well’ person would have struggled to get through this week!

I had to change my work days around as both myself and my son had different hospital appointments. So I worked Tuesday, Thursday and Friday morning. Unfortunately, my days off were all extremely busy running to different hospitals. 

My youngest son, has been experiencing a buzzing noise in his ears for the past six months and this week he had two hearing tests and then later met with an ear, nose and throat consultant. I was very surprised to discover that he unfortunately has quite severe hearing loss in his right ear and significant loss in his left ear. Initially, I started to beat myself up about not picking up on this. Honestly, I had no idea his hearing wasn’t good. His speech is perfect and his development normal. The doctors believe that he has a blockage between his nose and middle ear. They have given us a steroid spray and then he has to be retested in 3 months. Unfortunately, if his hearing doesn’t improve he will need to be fitted with a hearing aid πŸ˜• I know that our little family is so strong and we will get through this together. We’re staying positive and hope that the spray will do the job! πŸ‘

Yesterday afternoon (Friday), I met with one of my neurologists. It was a really positive consultation 😊 They’ve started a FND clinic at my hospital which I am being referred to! That’s fantastic news and I can’t wait to attend! Also, my pain has been getting gradually worse and worse. It keeps me awake all night. Normally when this happens they tend to change my medication which often results in me becoming more poorly. Thankfully, they decided to up my current meds and believe it or not, last night was the first full nights sleep I have had in a month. However, it’s early days and upping my meds will inevitably have side effects. I did struggle to wake up this morning and feel quite spaced out today. I won’t give up and I’m feeling positive that things are going to get better. 

Next week I have my PIP assessment (Personal Independent Payment). This is a replacement of Disability Living Allowance. I don’t expect a lot of help but we are struggling financially because of my illness as I can only just about manage to work 2 and a half days a week. If they allow me to have a small bit of help to cover the cost of things to help me when cooking and bathing it would be fantastic. At the end of the day, I know that having FND has been very destructive to our lives and if they don’t care that’s their choice. 

On the 23rd May, I’m meeting with an occupational therapist at my local neurological hospital in Watford for a fatigue management course. I’m hoping that she can help me with managing my fatigue better! She’s going to meet with my neuro physiotherapist and together they’re going to put together a management plan for me.

There’s so much coming up but I’m going to pace myself! On the positive side, all of these things are in place to help me and my family cope with everything with some support. Rather than trying to deal with everything on our own.

When everything seems likes it’s toppling down on top of you. When you feel like you’re drowning. Stop. Please stop. Then breathe. Close your eyes and focus on the now. Don’t worry about all the things that need to be done and all of the work you have ahead of you. Just take each little step, one at a time and smile. You can and you will get through this ❀πŸ’ͺπŸ’ͺ 

Thank you for taking the time to read my story. 

Charlotte xxx 

Burn out …

It’s been a funny week so far. I have been extremely busy with work, writing reports for the 3 classes I currently teach. Yesterday, I attended my oldest son’s parent’s evening. I was thrilled to hear how well he is getting on both academically and socially. It’s a relief to know that despite all my little family go through, my children are still able to strive and succeed. 

My younger son is away on his first school trip. He only went yesterday morning and will be back on Friday afternoon. However, I’m missing him like mad. The good thing is that he was fine when he went. In fact, he couldn’t wait. It’s great for him to have the opportunity to get away from it all. 

Unfortunately, I’m not very well at all today. I think it’s because I have pushed myself too hard. I worked all day yesterday, then left work just before 5. After that, I had to rush and pick up my son to go to parent’s evening until 8pm. I then spent 3 hours, marking, planning and writing reports. Personally, I think that’s a lot to do even for a ‘well’ person! On top of that, I have spent my day off finishing my reports. 

Last Saturday, I was unable to walk when I woke up. I was stuck in bed and had to call my partner for help. This happened another 3 times. I think this is happening more because when I become exhausted my brain ‘forgets/can’t’ send signals to my legs to move. It’s scary when you wake up and can’t move. You feel as if you have lost control of your body. All of this happens on top of my seizures and constant burning, agonising pain. Yet, nothing can be done. We are left to suffer like this each and every day. Living in constant fear of the unknown. Do you think this is right? Is it fair? If I was an animal they would put me out of my misery.

All of this is the reason why charities like FND Action are so vital and important. They fight to raise awareness and give people like me a life line. 

My fantastic Mr Right is going to be running the Beachy Head Marathon on October 28th to raise money for FND Action. I am so unbelievably proud of him. I know that there are already many other important charities around but FND has changed my familie’s lives upside down and there is so little out there to help me get through each day. So that is why he has chosen this charity, to thank them for all they do!

I need to rest now, my eyes are forcing shut which means it’s time to stop.

Thanks for taking the time to read my story. 

Charlotte xxx 

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