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fndandmecom

Living with Functional Neurological Disorder.

Month

December 2016

Happy new year xx 

It’s that time of year again when everyone starts to claim ‘New year, new me’. It’s been one hell of a year with so many changes. There have been ups and downs for all of us but we can smile and be thankful for the prospects of the new year ahead. 

If this is my first post you have come across, I would like to welcome you to my site. I began writing my blog in October 2015 and began with the purpose of raising awareness of my chronic illness, Functional Neurological Disorder. I’m delighted to say that since starting my blog, I have managed to enlighten people all over the world. I am always honoured when someone takes the time to follow my story. 

FND has made me appreciate my life so much more. I know that I can’t just make it disappear but I am learning to self manage my illness and listen to my limitations. I have been extremely lucky to have a great team managing my illness at the National Neurological hospital in Queen’s Square, London. Unfortunately, many others have not been so lucky and don’t receive the support and understanding they need. The main reason for this is a lack of knowledge and education in the medical world. That’s why I want to work to spread awareness through our registered charity ‘FND Action’.

http://www.fndaction.org.uk
My first plan is to hold a pamper evening to raise funds. Following this, my Mr Right and some of my friends and family have offered to take part in a sponsored run, I will have more details to follow in the new year. These are just a few ideas but I have many more. I think it’s absolutely fantastic that FND Action are up and running. It’s about time that this terrible, life changing illness is recognised as a serious problem and the more awareness and understanding of it the better chances we have.

Functional Neurological Disorder has many different debilitating symptoms. These can include: non epileptic seizures, brain fog, neuropathy  (electric shock pains all over your body) and in some cases, paralysis. I have recently experienced loss of movement in my legs, it is terrifying. You can find more information about FND at the FND Action website and also at;

http://www.neurosymptoms.org

I have no intention of claiming that this new year I will make incredible life transformations. I will be happy to make just some steps towards feeling well again. I have learnt to take each day as it comes and to always be thankful for the people who surround me. 

I wish you all the best for 2017. Let’s hope it’s a good one for everyone and for FND discoveries and research. 

Thanks for taking the time to read my story. 

Charlotte xxx 

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Turning a corner. 

I can’t believe it’s Christmas eve again. The saying that ‘each year goes faster, the older you get’ is most definitely true!

I have had a whole week at home to rest after being advised by my neurologist that my body was ‘shutting down’ because I was over doing it  (again). I am thrilled to say that for the past two days I have had no seizures and no loss of movement in my legs. What makes me feel so good is my youngest son. He said that all he wanted for Christmas is for his mummy to still be walking, I told him that whatever happens we will get through it. I know that this may only be temporary but I just want my family to be happy and enjoy Christmas. I hope that by listening to my body and slowing down, we can enjoy a relaxing break without any problems. 

It was really, really hard for me to give in. I hated to admit defeat and to not go to work. I know that everything will run smoothly without me there but I feel that I’m letting FND win every time I have to stay at home. I need to turn a corner. I know that over doing it will ultimately result in a rise in symptoms and illness so I have to stop. I won’t be able to change straight away, it will need to be a gradual change of habit. I need to avoid the triggers and think of my family!

As we head into a new year, after what can only be described as a bloody awful one for 2016, I plan to try and focus on positivity. I will be arranging some fundraising activities for FND Action and along with a fellow sufferer, we plan to launch an awareness raising event on social media. All very exciting but also very important. Education is key and considering up to 40% of patients in a neurological hospital ward has FND, it’s about time that everyone learns more about this horrible, life changing illness. 

Thank you for taking the time to read my story. I hope that by reading my blog that you have gained a greater understanding of Functional Neurological Disorder. 

Charlottexxx 

I may be losing the battle but I won’t lose the war!

I may be losing my current battle but I will not lose the war! My brain is exhausted and trying to deal with all this pain so of course I am going to experience new symptoms. 
Over the past few days, I have lost the use of my legs momentarily. I know that this is linked to the numbness in my back and bottom. I will not lie, I hate lying, I’m petrified. Normally, I am not anxious but it’s hard to not feel quite anxious when your legs just go to sleep. At the moment, if I try to distract my brain and get others to move my legs up and down, eventually the feeling comes back. I have to hope that this continues to work.

Unfortunately, unlike my seizures, I get no warning with my legs. It seems to happen anytime. I just have to stay positive and fight against this all the way. I have been referred to a specialist neurological physiotherapy centre to try and improve my sensations and movement. Also I am going to try some more specific CBT (Cognitive Behaviour Therapy ). This CBT focuses on retraining my brain to stop it blocking the signals to my body.

This time of year is not great for everyone. Especially those spending Christmas without certain loved ones for the first time. This makes me realise that despite all this absolutely awful shit (please excuse my language) I MUST be grateful for what I have. I won’t whine and I will stop feeling sorry for myself and focus on getting better. 

Thanks for taking the time to read my story. 

Charlotte xxx 

Living in hope!

I have been quite stuck on how to explain my current health situation. My neurologist has basically said that he is quite sure that the numbness and loss of movement in my back and legs is being caused by my FND. Of course, I’m pleased that there doesn’t appear to be a problem with my spine. However, as it’s my FND there’s nothing that can be done.

All I have is hope. Hope that this new symptom doesn’t develop. Hope that I won’t wake up and not be able to walk. Dr K said that we can try some neurophysiology, which is basically neurological physiotherapy to try and improve the sensation in my back and bottom but there’s no guarantee that it will help/work.

The numbness started the day after I first lost the use of my legs. Originally, it was just in my lower back. Now it has spread into my bottom and half way up my back. It could ease but at the moment, it’s getting worse. I am experiencing more weakness in my legs and they keep not reacting when I try to move them. I can feel my body losing power. 

Everyone keeps saying that at least it’s nearly Christmas but what they don’t understand is that when you live with a chronic illness and suffer with fatigue it doesn’t matter. I could have a month of rest but it doesn’t make things easier. 

My neurologist is going to be at my local hospital on Tuesday to run some more tests. I’m not a religious person but I have nothing against those with faith. It’s crazy that despite being a person who doesn’t have a belief, I suddenly have an urge to pray. Not for selfish reasons but for my loved ones. I know that the world would continue to go on if I was to lose my abilities but I still feel that my boys need me. They’ve been through so much already. They don’t deserve to go through anything else!

I have a very busy week ahead  (as usual!). Let’s hope my body doesn’t let me down. I have so much to be thankful for and I must stay focused on the positives. 

Thanks for taking the time to read my story . 

Charlotte xxx 

Keep the faith!

I’m excited to find out that there’s now another FND charity /support group up and running called FND Dimensions! I’m also thrilled to see that they have the support of Dr Mark Edwards, a specialist in our condition. I was lucky enough to receive some treatment from him at the National Neurological hospital in Queen’s Square before he moved on to run a clinic at St George’s hospital. 

I’m afraid to say that my current condition has plummeted. I was sent to my local hospital by my GP on Tuesday as I am experiencing numbness in my back and bottom and I’m losing strength in my legs. As a precaution, the Orthopaedic doctor sent me for an MRI scan of my spine. Thankfully, there’s nothing pressing against my spinal cord! Unfortunately, this means it’s probably a new symptom of FND. I’m trying my best to stay positive and hope this will pass, however it seems to be progressing and worsening. After I had a seizure last night my legs went completely numb and when I tried to stand I couldn’t.

I know that I have been extremely busy and definitely over doing it but I have already made changes that will start next week to improve and ease my workload. I am blessed to work for an amazing and compassionate person who only wants the best for me. Yet another reason to be thankful!!

I am going to see my neurologist at Queens Square tomorrow afternoon to find out what can be done insight of these new symptoms. There is absolutely NO way I’m going to allow this to beat me. I am sure there must be some way to stop the numbness spreading. My boys and everyone else need a ‘functioning’ Charlotte not a broken one!

I will hopefully be able to update at the weekend with some good news (fingers crossed). 

FND is not just an umbrella for unexplained symptoms. It’s a real disorder that affects the way your brain functions. It can block signals that produce sensations and movement. I just need to find a way to ‘unblock’ my signals. I read this earlier on the FND Dimensions website, a piece written by Dr Edwards.

Thank you for taking the time to read my story.

Charlotte xxx 

Check out this Pin on Pinterest!

I thought you’d like this Pin on Pinterest… http://pin.it/K3-dRRu

Survivor!

Another week is nearly through and despite feeling absolutely drained I am pleased to say that I am surviving. I am in constant battle mode and sleep seems like a distant memory but I haven’t given up!

The extreme cold weather, much like the extreme heat is playing havoc with my nervous system. I was kept up through most of the night feeling as though my spinal cord had frozen over. It wasn’t just the feeling of being cold but more like being internally frozen. Despite wearing several layers and even holding a hot water bottle against my back, I just could not warm up.

This symptom is part of the chronic pain experienced with Functional Neurological Disorder. The FND Hope website explains how the nervous system causes certain parts of your body to become extremely sensitive to temperatures.

http://fndhope.org/fnd-guide/symptoms/chronic-pain/

It seems to be quite a common problem for people who suffer with chronic fatigue to have many factors that prevent them from getting a good night’s sleep! Ironically, even if I was to get a 12 hour sleep my fatigue will not improve much as my body is in constant fight mode.

The positive side of this is that despite all of my challenges, I’m still functioning. My close family and friends are my energy and my spirit. My fellow chronic pain warriors give me hope. We’re very close to a new year and I plan to make it a year of knowledge and understanding. Together we can spread the word and get everyone talking about and understanding Functional Neurological Disorder.

I’m excited about the journey, fundraising and social media awareness is what 2017 is going to be all about. Thank you to my readers for joining me on this journey, I hope you will continue to join me into the new year and whatever it may be.

Charlotte xxx

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