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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