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Report transcript in: Living with Functional Neurological Disorder (FND)
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Living with Functional Neurological Disorder (FND)
Please Report the Errrors?
Well,
it started in 2023.
Um,
Everything was normal,
normal day at work.
Nothing really
that slowed,
and then it came to the end of my work day and I went to go home and
I just started shaking.
Um,
I couldn't move at first,
I couldn't get myself up out of my chair,
um,
I couldn't speak.
Um,
when I managed to get off the chair,
um,
my arm started shaking.
And then um
I got picked up,
um.
By a friend,
um,
and then my dad came to get me.
Um,
and by that point,
um,
I physically couldn't speak at all,
nothing could come out and I was just.
Uh,
smacking my arms like that on my legs,
um,
and that continued all the way to the hospital.
Uh,
the doctors didn't see me.
Um,
and then I spent
the next 5 days in hospital with assessments,
um,
CAT scans,
MRI's,
um,
seeing the straight nurse,
um,
so they initially thought that's what it was.
Um,
And then
within I think 24 hours,
they diagnosed me with FND.
Well,
they kept me in for 5 days just for monitoring,
um,
also cause I use my legs as well,
um,
I had to learn to walk again.
Um,
but my speech didn't come back,
um,
for about two weeks.
Um,
and to be honest,
um,
I didn't really know anything about FND.
I didn't know what it was,
um,
it's not something I'd heard of.
Um,
and I was given a print out,
um.
And then sent on my way really,
so it was just kind of.
Um,
Here's a bit of information.
This is your new life,
basically,
um.
So
it was just um.
There are now,
um,
basically coming to trying to come to terms with this even
though I didn't know what I was coming to terms with,
um,
I didn't know how long it was gonna last for,
um,
what are the symptoms I was gonna expect.
Very
overwhelmed.
Um,
very confused,
um.
And quite frightening,
to be honest.
Some of the challenges that I found um
was
not being given really any any information when I left the hospital.
Um,
I found
um a lot of doors closed in my face um either because
they didn't know what FND was or just didn't understand it enough.
Um,
I was told by general practitioners,
practitioners that there was no um
help for someone with F&D in the community at all.
Um,
so for about 6 months we tried to do our own research and try and find out,
um,
the best avenue to slow down.
Um,
and by that point we actually met somebody with FND,
um,
and her mum
had been through everything with her,
so
luckily she had all the information,
uh,
for us,
and that started opening doors,
um,
to our social carer,
um.
Social prescriber,
um.
Uh,
rehabilitation,
um.
Yeah,
and.
It's led us to where we are now really,
and I had my lanyard on which had my FND on it and it describes everything that goes on,
what symptoms could be,
and how to react,
um,
and how to be with me,
um and
uh.
One of them laughed at me and said uh she's passed out.
And then just left me.
Um,
and they were shouting at me,
trying to get me to come round and I couldn't and I could hear them but I couldn't.
And
I think the main thing out of that is if somebody's wearing a lanyard,
read it.
paralysis,
and that can be legs or 4,
or it can just be one leg.
Um
I get uh ticks.
Loss of speech.
Uh,
blackouts.
Um,
dropping.
Um,
non-epileptic seizures,
um.
Dissociations,
um,
and with the ticks they're not just,
They're more physical
and they became verbal after a little while as well.
Now we have to take everything.
Uh,
day by day,
um,
I don't know what day I'm gonna have,
so,
um.
We do try to make plans a bit further ahead,
but it will make them no
more than a week.
Um,
in case.
I have a flower.
Um,
But yeah,
it's usually we just have to take it day by day and see what happens.
Um
well,
my partner,
he's my main carer.
Um,
so
he had to stop going into the office.
Um,
Um,
I think he,
he,
well,
he only goes in 2 days a week now.
Um,
But at the start he did um
start working.
Um,
to help me,
um,
but a lot of the time
he.
He either has to help me get dressed or help me get a shower,
um,
sometimes he has to pick me up off the floor.
Um,
Yeah,
uh,
he,
he's just gone from being my partner to my partner and now I'm a full-time carer.
Um,
now I have to use um eights,
so my walking stick,
my walker or my wheelchair.
Um,
Everything has slowed down
a lot,
um.
I tend to sleep quite a lot as well and um I had to leave my job.
Um,
and we've had to put,
uh,
measures in to have my son looked after,
um,
even if I'm not having a flare up,
he's still looked after,
just in case.
Um,
I've only just recently started getting back out,
um,
before that I didn't go anywhere.
Um,
I was very much stuck in the house,
um,
and when I was in the house,
um,
I was either downstairs
or I was upstairs.
Um,
and I got very isolated,
um,
from the family quite a lot as well.
Um,
if I couldn't get upstairs to go to bed,
I'd sleep on the sofa and I could be there for
one night or several,
um,
so I would get quite isolated.
Um,
and sometimes I'd just get stuck upstairs
because obviously that's where the bathroom was.
Uh well now I'm in the bungo,
um,
so that's changed and it's made life a lot easier for all of us.
Um,
but I've also,
um,
started managing my symptoms a lot better.
Now I know how to,
um,
and sometimes I get signs when it comes on.
Um,
but I've also learned not to panic.
Um,
and stress myself out more,
um,
whereas before,
because I didn't know what I was dealing with,
it was very frightening,
especially when it was a new symptom that came on.
So when I get overwhelmed,
um I tend to take myself into a different place
um it's a lot calmer and a lot quieter,
um,
and I find that helps me ground quite a lot
and just take my time,
um,
and then come back when I'm ready,
not when
people say.
Um,
I also find um now people are a lot more patient with me,
whereas
they weren't so much as patient before.
um but now they understand it helps a lot that they are patient with me.
Um,
and yeah,
just pace myself,
take my time doing things and try not to rush.
Yeah,
um,
it's the footprint,
um,
so it's got a little SOS button on it,
um,
it's got a GPS tracker in it.
Um,
so with this,
um,
when I'm out and about and if anything does happen to me,
I can press this and they'll be able to find out where I am.
Um,
so it's definitely given me the confidence to go out more now,
um,
whereas before
I had none.
At the moment
we are just still taking it step by step,
but
the goal is to get back to work and.
Yeah,
spend a lot more time outdoors and in,
and you do more family holidays like going to Egypt and.
And not take it for granted,
really.
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