Gees! What a ride!

Yesterday I went to see a neurologist for an assessment, and I came away with a diagnosis I knew very little about — Functional Neurological Disorder (FND).

To be completely honest, I have no idea what it is, what it means for me, or what I might be in for.

Since coming home, I’ve started doing a little research. And while I know I need to learn more before I make any assumptions about my future, some of what I’ve read has been difficult to take in.

I cried when I read the statistics around how many people go on to make a full recovery (not a lot). But many with treatment go on to improve quality of life, so I am still hopeful.

Of course, I still think after eight years of living with issues, every time I hear or read that the outcome may not be what I hope for, it knocks a little more of the hope out of me.

And perhaps that’s to be expected.

After eight years, I have to be realistic that a complete recovery may not be my story.

But that doesn’t mean there can’t be improvement.

Recently, I’ve had some small steps forward that have given me hope. Maybe my goal now doesn’t have to be getting completely back to the person I was before.

Maybe it’s about finding a better quality of life.

More balance between my symptoms and the things I want to do.

Being able to recognise and hopefully have more control over flare-ups.

Finding ways to manage the things that currently overwhelm my body and brain.

And perhaps learning how to live with what I have, rather than constantly fighting against what I wish I had.

I’m still not fully informed about FND, what my particular prognosis looks like, or what the road ahead will involve. And honestly, that unknown part is pretty sad and scary.

But I’m also trying to look at it differently.

For me, knowledge is power. Or empowering

So now I have something new to learn about.

Something new to understand.

And hopefully, something new that may give me some tools to make life a little easier.

I don’t know what the future with FND looks like yet.

I don’t know how much I can improve.

I don’t know what recovery will mean for me.

But I do know that I’m not ready to give up on improvement.

Maybe hope doesn’t always have to mean believing everything will go back to the way it was.

Maybe sometimes hope is simply believing that tomorrow can be a little better than today.

And for now, that is what it is….

Update-

The more I look into FND, the more I doubt this is correct? So what do I do now? I believe my symptoms fit better with post concussion syndrome align with the timing of the accident and symptoms started and continued from that point. I’m not sure how to access the appropriate help if I am not getting correct “diagnosis”?