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fndandmecom

Living with Functional Neurological Disorder.

Month

February 2016

Pace yourself!

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It’s time to ‘pick up my game’. My health is once again failing and I know that I have a real fight ahead.

I am just coming to the end of a lovely half term with my boys. It’s been a week of ups and downs. I had to say goodbye to a cherished family member this week. She was a wonderful lady and will be missed terribly.

The beginning of the week was filled with optimism, I felt quite well and rested. I received my appointments for my echocardiogram (heart ultrasound) and my 48 hour ecg. Despite these being supposedly urgent, I have to wait until the 18th of March and 8th of April. According to the cardiology department these are urgent appointments and if they weren’t I would be waiting until November!!

As the week has progressed, I have been experiencing issues with FND. These have included severe migraines and burning pins and needles across my body. On top of this my chest seems to be getting worse. I continue to feel dizzy/faint and have a heavy ache across the chest. I am also getting quite breathless. On Thursday night, I was unable to speak!? I think this was because I couldn’t catch my breath but it could be my brain, who knows?!

I want people to understand what I’m dealing with each day. This isn’t because I want sympathy, I am simply trying to educate anyone that wants to learn about FND. If anyone recognises any of these symptoms in a friend or family member, they could help diagnoses.

I am returning to work on Monday, I have planned my days with help from my CBT (Cognitive Behaviour Therapy) therapist. I am trying a method called Pacing. This is all about breaking your activities into sections, making sure that you don’t over do it. Hopefully, my health won’t let me down. I will try to listen to my body and stop when I need to.

Thank you for taking the time to read my story. It really means a lot. I am always happy to answer any questions about anything mentioned.

Charlotte xxx

Please note that the picture is not mine, I borrowed it from http://www.paintoolkit.org/tools/tool-three .

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When the going gets tough …

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I have been suffering a lot over the past week. I met with a cardiologist registrar on Wednesday who made the decision to not go ahead with the Electro Cardioversion. He felt that the operation was ‘too high risk’. I was told to continue using the glycerine trinate spray and that they will monitor my heart over the next six months. However, when I got home from work on Thursday, I received a phone call from the registrar. After going over my case with the consultant cardiologist they are now going to run more extensive tests. Next week, I’m having a 48 hour ecg and an echo of my heart (ultrasound).

When I was told that they weren’t going ahead with the operation I was relieved but at the same time, I felt overwhelmed by the prospect of dealing with the fainting episodes and heavy chest pain on top of my brain disorder. So when I received the call yesterday I suddenly felt like things were going to improve.

Unfortunately, I have had to stop using the spray as it sets off my migraines and causes more seizures (sometimes I just can’t bloody win). I have just finished work for half term so hopefully this week will give me some recovery time!

I really feel let down by my own body. It’s almost like I am fighting a battle against myself. The constant pain is trying its best to destroy me but I’m not sure how much more fight left in me! My body is very weak, I was sick through the night because of the pain.

This is the harsh reality of living with a chronic illness. Sometimes you can’t be strong and fight, you have to stop and allow yourself time to deal with it all.

If by sharing this personal journey I can help just one other sufferer see that they are not the only one going through it all, I would be grateful.

Thank you for taking the time to read my story.

Charlotte xxx

A poem for my son xxx

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Please don’t follow in my footsteps,
Take another path.
I will try my best to guide you,
On a better task.
Please don’t follow in my footsteps,
There is so much more to see.
Let me help to show you,
Just how amazing you can truly be.

The picture is not mine. I have borrowed it from wclimate.com

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