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fndandmecom

Living with Functional Neurological Disorder.

Month

April 2016

Onwards and upwards

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This week I finally got a diagnosis for my heart condition. I am extremely fortunate that there is no sign of disease in my heart. I have arrhythmia aka atrial fibrillation. Unfortunately, I have to have a pacemaker fitted.

http://www.nhs.uk/conditions/arrhythmia/Pages/arrhythmia.aspx

The link above describes my condition in more detail according to the NHS.

The cardiologist seems extremely confident that once I have had the operation my fainting episodes and heavy chest pain should cease. Of course, I’m not totally thrilled that I have to have a pacemaker at 33 but who cares?!? After all the recent despair my family have been through, the fact that they can fix me is a god send!

I just need to find a cure for FND then I will be laughing! However, I won’t hold my breath!!

I have a consultation with the neurologist at Queens Square hospital next Friday. I am hoping to discuss my new condition and my current medication. Eventually, I would like to stop or at least cut down on my medication. Here’s hoping!

Thanks for taking the time to read my story.

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Strategies to cope with the symptoms of FND.

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Living with FND requires a lot of self awareness. Looking after my two children and working as a teacher, albeit ‘part time’ is quite a job in itself. If I don’t keep check on my condition, I can be hit really hard leaving me bed bound and unable to function.

My recent CBT (Cognitive Behaviour Therapy) has really helped me to recognise the need to allow myself to pace my day. My therapist asked me to fill in a weekly diary noting my day to day activities. When I showed her my diary she was shocked, she couldn’t believe how much we do in a week. However, I know that most working mum’s diaries would look the same!

I am a strong believer in routine and without it there is no way I could manage to work and look after my family whilst dealing with the ‘delightful’ symptoms of FND. I know that I am very fortunate to be able to live a relatively normal life despite everything.

The brain is an amazing and intriguing ‘computer’. I like to think that mine just has a ‘virus’ at the moment. I am lucky to have good days as well as the bad. When I first fell ill I thought that was it. Then I realised all that I had to lose. That’s when my fight began.

Although there is no magical cure for my illness it can definitely be kept under some control. Obviously, sometimes you can’t fight it or beat it but there will be times when you are winning.

So, in essence, my top tips for today include: pacing yourself; keeping a good routine; allowing your body to cope with the bad days and I guess just not giving up!!

I will always live with the belief that one day I will wake up and my pain will be gone. I hope that I can give hope to those in earlier stages of FND that things can improve. Despite the bad days, life is good and it’s most definitely for living.

Thanks for taking the time to read my story. If you have any other tips for coping with the symptoms of illness please feel free to comment.

Charlotte xxx

Pinterest: discover and save creative ideas

https://uk.pinterest.com/pin/337981147010971929/

Fighting a losing battle.

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I feel angry today, upset and frustrated. It’s been a really tough week. Sadly, my cousin passed away at the age of 38. Our whole family are shocked and devastated. I hope that he is now in a better place. He will be missed terribly.

   Yesterday, I know I did too much but why should I suffer because of that?!?

I spent the night in pain, one seizure followed the other. The burning pain travelling around my body. It’s not that I don’t appreciate the gift of life, it’s the fact that my ability to make the most of it is constantly compromised.

I tend to find that my readers prefer my more positive blogs but the harsh reality is that when you are in a constant battle with your own body, positivity is not always possible.

The following video explains in some detail what symptoms can occur:

I know that I am very fortunate as many who suffer with my disorder are wheelchair bound which is awful! I can’t imagine what effect that would have on their lives. I always try to look on the bright side of things. Hopefully, tomorrow will be a better day.

Thanks for taking the time to read my story.

Charlotte xxx

Watch “Functional neurological disorders Dr Jon Stone” on YouTube

Functional Neurological Disorder Awareness Day

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Today is FND awareness day. I only found out because I fellow blogger and sufferer, chachasfnd,  has posted this.

I am so grateful to everyone who has taken the time to help me raise awareness of FND. Whether through reading and sharing my blog or other ways.

As today is FND awareness day, I would like to re share the following link: http://www.neurosymptoms.org . This was the first website I was given when I was originally diagnosed in 2013. There are now a lot more websites and videos available on the Internet.

I hope that the more awareness there is, the more people will understand this horrible, life changing disorder.

Thanks as always to everyone who takes the time to read my story.

Charlotte xxx

Let’s get down to business!

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I have arrived home safely after my surprise visit to see my family in Scotland. Tomorrow, I am going to have my last set of tests on my heart.

Since November 2015, I have been experiencing chest pain and fainting episodes. I have been told that this is not part of my brain disorder (Functional Neurological Disorder). I have been thrown from pillar to post, told that I was to have a serious operation then told that it was too risky. The main issue seems to be arithmia (irratic heartbeat) although they are still not sure what to do.

Tomorrow, I am having a 48 hour ecg and following that the consultant will finally make a set decision about what to do. I have also had 2 prior ecgs and an echocardiogram (scan of the heart).

I know that the NHS are suffering and are overrun but I have been left since November not knowing why I keep fainting and feeling like someone is sitting on my chest. I hate to be a nuisance but I really must have answers now. I try my best to stay positive and I am enjoying living life to the fullest and I just need this issue sorted asap!

I hope that soon I can at least get my heart issue under control so that I can focus on dealing with FND.

I will keep you posted and hopefully continue to make the most of my ‘good’ days. Thanks for taking the time to read my story.

Charlotte xxx

Float like a butterfly …

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I’m writing this blog at my parent’s house in Scotland. Following my last post, I’ve been trying my upmost to ‘live’ and not just exist!

I have been really quite ill but despite that on Sunday morning I decided to pack up our things and head to Scotland for a surprise visit to see my family. I know that I am not really well enough but I might never be and I am overjoyed that I took the risk. I feel exhilarated, even when I was well I would never normally go anywhere without a set plan. The feeling of freedom, the feeling of excitement when we arrived, it was just amazing!

I know that some who may read this will think ‘big deal’ but this was a huge step for me. I spend each and every day dealing with pain. My life is consumed by FND: debilitating seizures; excruciating migraines; muscle spasms. Taking the chance to do something out of the ordinary means so much to me.

I hope that this is the first step of many towards living my life to the fullest. I will NOT let this beat me. I have too much to lose.

Thanks for taking the time to read my story.

Charlotte xxx

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