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fndandmecom

Living with Functional Neurological Disorder.

Month

July 2016

Living with FND

Every time I have a ‘bad turn’ with functional neurological disorder (FND) I begin another desperate search for a miracle cure (pointless I know). One prominent fact that I notice is that each neurological hospital has a different explanation of the disorder and its symptoms. Today I came across the Sheffield NHS website. I was relieved to see that they have included many symptoms with some possible relievers. 
http://www.sth.nhs.uk/neurosciences/neurology/neurology-psychotherapy-service/functional-neurological-disorders

Today is not a great day. I have continuous stabbing head pain and burning pins and needles. On days like this, I really appreciate my ‘better days’. Fingers crossed for a better day tomorrow! 

Thanks for taking the time to read my story. I hope you find the link interesting and informative. 

Charlotte xxx

Some exciting information. 

http://mobile.journals.lww.com/neurotodayonline/_layouts/15/oaks.journals.mobile/articleviewer.aspx?year=2016&issue=07210&article=00003

This article explains how FND/FMD can be seen on MRI scans. Hopefully, this will help to raise understanding of our condition.

In the depths of darkness there is light.

It has been a while since I last wrote a blog. Once again, I have been extremely poorly. Last week I was admitted into hospital as I kept collapsing and suffering with extreme chest pain. On top of this my wonderful brain decided to throw in some seizures for good measure. I have been putting off writing the blog as I didn’t want my readers to think that I was looking for sympathy. 

After recent events in my family, it feels quite selfish and self absorbed to write about my illness. I am quite sure that what I am suffering from isn’t life threatening. If I’m honest, I have been feeling quite defeated. My fight has become almost too much. If it wasn’t for my boys and Mr Right, I’m not sure where I would be now. The cardiologist is sure that a pacemaker is the right choice but yet they are continuing to make me wait and go through more tests. 

My Uncle and Auntie, who in fact are not my actual family, have been beyond amazing. They have ferried me to and from work to the hospital and really supported me. I will be forever grateful but this whole situation is killing me. I have gone from being a strong, independent woman/mother to a pathetic shell of what I used to be. I can’t bare being such a burden on anyone. I know that they do it out of love, but it shouldn’t be their responsibility!

I will always try my best to be positive for my children. Dwelling on the negatives will get me absolutely no where. However, sometimes it does get a bit much. I am well aware that there are many people a lot worse off than me but occasionally, it can become hard to think that there are others suffering too.

I have been touched by the love and care those around me have shown at home and even in my work place. My younger sister has been an angel. It breaks my heart that she is the one looking after me when it should be the other way round. 

I find the process of writing my blog very therapeutic. It gives me a chance to process everything that has happened over the last few weeks. As I mentioned earlier, please don’t read this as a cry for help but more a process of therapy. If I can reach out to just one or two people who are dealing with FND or a heart condition, I hope that it will give them help, advice and even some support. Also, I hope to help the loved ones of sufferers too.

Thank you for taking the time to read my story. 

Charlotte xxx

And the moany cow award goes to …

​It’s been another hard week and I have given in to negativity. My body has been on full attack mode and I have just had enough. I wouldn’t want to have been around me this week. I even had a go at poor Mr Right and regretted it straight away. 
Life as we know it is never easy. I have a never ending list of things I need to do at work with no time to do it and on top of that, I am trying to pack ready for our move at the end of the month. Sadly, I have struggled to be positive and have taken it out on my loved ones.

I seem to be in a never ending cycle of migraines, burning pins and needles topped off with feeling faint and dizzy whilst trying to deal with everything that needs to be done. Stupidly instead of just getting on with things, I have been sucked in to a hole of pathetic self pity.

I am not normally one to stress and I know that in the long run it will make my symptoms worse. Yesterday, I was slapped with reality. It was the centenary of the Battle of the Somme. All those brave, courageous young men who lost their lives to ultimately give us the freedom we have today. It made me realise that actually I have a hell of a lot to be thankful for!!!

We are, at the end of it all, only human. Emotions are what make us who we are. Sometimes it’s okay to feel a bit sorry for ourselves. We will all experience hard times at some point in our lives. Just don’t let the negativity take over. For all the bad times, somewhere in the future are a whole lot of good things coming your way. 

Thanks for taking the time to read my story. 

Charlotte xxx

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