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I thought I saw you today, yesterday and last week. The memories of you haunt me at every turn. How can it be that even after all this time, your face is so vivid in my mind?
I often wonder why must I still suffer? The pain that I endured all those years was surely enough. I bare the scars of all that pain. Scars that run not just on my skin but deep inside me. My mind wonders dangerously back and forth. I can’t escape these dark thoughts. It’s like I’m trapped in my own personal hell. I try to convince myself that it’s not my fault but doubt creeps slowly back in.
Some days I feel as though I am suffocating, screaming so loudly inside but only I can hear it.
The damage you cause even now is shocking. Knowing that you have the power to ruin my each waking moment breaks me into tiny, shattered pieces. I hide behind the smile. Everything is fine. Things are great. They should be. My dreams are coming together but I just can’t get away.
How dare you have this power. I don’t want you to. I need to escape from this but I just don’t know how. What’s the answer? How do you erase a part of you that’s so big. A part of you that shaped who you are. I thought I was fixed, that I had finally let you go. Yet here you are consuming my life again.
My instincts kick in and I want to take them with me and hide. I want to hide away and keep them safe. There’s no one I can really trust. No one understands. If I talk to anyone, they’ll think I’m mad, irrational.
I’m not a religious person but if there was a God, I would pray for him to keep us safe and to help me to be stronger than I feel right now. Help me to raise up and grow and finally be set free from my past.
One day, I will look in the mirror and see who I was meant to be. The me before the hell of you.
The struggle is real but despite everything I am still standing. FND can be so debilitating and the fact that I am working full time makes me proud. Some nights /mornings are harder than others but it’s all about pacing. Following the spoon theory.
If you want to work when living with a chronic illness, you have to learn to say no. There’s only two precious days at the weekend and you must use them wisely. I want to spend quality time with my wonderful Mr Right and my fantastic boys and I can. However, I must give my body a chance to heal and recover so that I can make it through another week. It’s essentially all about balance. I will spend my Saturday doing the things I love with my little family. Sunday is my day off. A completely selfish day of nothing.
For so long, I would feel ridiculously guilty for having a ‘nothing day’. I realise now that I have to. If I am to continue working full time in a challenging job, I have to give my body time and these nothing days are exactly the right medicine.
I know how lucky I am to be ‘well’ enough to be able to work. I know that many of us with FND want to work but can’t. When I was first diagnosed, I tried to keep working but had to stop for a little while and for me that was heartbreaking. So I really appreciate where I am now. Considering how ill I was back then, I have come a hell of a long way!
Each day is a challenge, managing my huge array of symptoms caused by FND yet here I am, everyday taking on that challenge and never giving in. I have developed labrynthtitis- an inner ear infection which is causing terrible dizziness, it’s a pain and making walking a bit tricky but nothing I can’t handle.
Keep fighting, there’s a whole world out there waiting for us all!
Thanks for taking the time to read my story.
Charlotte xxx
fndandmecom 
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