Skip to main content
Menu
Community Reporter Network
User account menu
About Us
Log in
Facebook
Twitter
Youtube
Main navigation
Home
Explore
Reporters
Report transcript in: Frances story - Living with MS
Breadcrumb
Home
Frances story - Living with MS
Please Report the Errrors?
It's like the lodger.
It's like the lodger that came to stay 20 years ago,
and it won't ever leave.
I go to the loo probably 6 or 7 times a night.
And I have Botox in my bladder and my bladder's really
good at the minute and my MS is still really good.
But
my God,
I haven't slept through the night in.
Yes,
um.
If I can get 5 or 6 hours uninterrupted sleep,
I
feel,
I feel invincible.
And
I can't.
I can't go too far today without knowing where the loo is.
I can never go anywhere without knowing where the loo is,
or the carrying of the pads or the
radar key in my bag or the excuse me,
I can't wait.
As I rush past the bar in the pub,
which is the only place that's open.
There are things that always take longer.
The planning of the execution of takes longer.
There are things that's.
Will be
difficult
in terms of balance and sensation,
um.
I
was emptying the freezer that I'd inadvertently
defrosted this morning and standing up,
my balance went.
And I was staggering and I looked like I was drunk.
That's normal.
I
will.
Not want to be.
Out
too long,
too late.
Today,
because I want to try and get round Park Run tomorrow,
and in order to do that.
I need to go to bed extra early because I won't get a good night's sleep,
cos I never get a good night's sleep,
and tomorrow morning I'll be taping my knees up and I'll be running
if I can,
around Booton Park wearing.
Those kind of massive
incontinence knickers,
because that's my reality
and it'll probably smell,
and that will be my reality.
And all of those things
need
more time
and more shopping and more planning.
And
That's leaving aside.
I haven't had any particular flare-ups of symptoms in the last
couple of months.
But 2 months ago,
I was struggling with sciatic pain.
That meant that it was almost impossible for me to sit
without
real,
real,
real pain.
And
I figured out a few piriformis stretches,
and I wrote to my MS nurse and I had an MRI done on my back,
cause I've asked to go and see the neurophysio,
because
I'm struggling.
I'm struggling in the way that I'm,
I'm very fit.
In some ways,
I'm very active in other ways.
But there are bits that hurt
regularly,
and there are bits that don't work regularly
um.
I couldn't feel my thumbs the other morning,
and I've no idea why.
But
It was kind of like there were no thumbs for a
couple of hours and then they kind of came back.
Um,
I can't set goals.
I,
I,
I would really like to be doing some,
there's some rides that I'd really like to do this summer.
I can't realistically commit to doing those things until much nearer the time.
And I often lose out.
On
being able to do things like going on holiday or making
plans because I have to see how the weather is.
Because extremes of heat can be incredibly debilitating,
um.
I have to be able to be unreliable in my life.
So,
not just in cycling terms,
but.
You know,
you get invited to go somewhere and
I'll be there if I can,
is always my,
is,
is always what I mean when I say yes.
I always say yes.
But I say yes in the knowledge that.
It doesn't always happen that way.
And I can't always be there as long and I can't always.
Be quite as shiny as I might have once been or as,
yeah,
as present or as reliable.
So
What would you say to someone who's just been given that diagnosis of MS?
It's an absolute bitch.
It's an absolute bitch who has come to live with you.
And you can train it
And you can accommodate it.
And it will
Yeah,
it will.
It will,
it will pick you up
and drag you around on a piece of string if you let it.
But
If you can find a way
of.
Understanding
it
and you
and how you can live alongside one another.
If you can find a way of accepting that you didn't really want it,
but you've got it,
and
it's living in your house,
in your body and doing its thing down here.
Than your central nervous system,
um.
You'll be all right
You'll be fine.
But you need,
you need to respect
it.
And you need to respect yourself.
And in respecting yourself,
you need to be incredibly incredibly honest.
Not just with yourself.
But with everybody around you,
and that has a big impact
on relationships.
And particularly it has a big impact if you're a parent.
Because you're gonna have to say to your kids,
you know what?
That's great,
but maybe I can't.
Being unreliable for children is hard,
um,
and you're gonna have to.
Be different for people.
With people that you've previously been,
whoever you've been
with.
And that's hard.
And there are gonna be days when it is unutterably awful
because.
You can't do the things you want to in the way that you wanted to do them.
And letting other people down.
Is way,
way harder than letting yourself down.
Cos you can adapt your own expectations of yourself.
But
Letting other people down in the bitch.
But you'll find a way of doing it,
you'll find a way of
of.
Being OK.
And then if you can tell the world how you want to be treated
as a result.
Because you're not always gonna want
to be
wearing the t-shirt that says,
you know what?
But there are days when you do wanna be wearing the t-shirt,
and that t-shirt
says.
Leave me alone.
Give me what I need,
give me what I didn't what I deserve and I respect.
Treat me with some compassion and some kindness.
And again,
to be honest,
that should be true of everybody.
It shouldn't just be for the people with MS or
the people with any disability or any lifelong condition,
but.
It's hard.
And
I remember saying once,
I'd like a day
now.
Now that I've had it for 20 years.
To not have it
To have the body that could run and jump and climb
trees and had knees that didn't give way and hips that didn't
hurt and,
A bladder that didn't leak and.
And a sentence that could
get to its proper conclusion rather than a tangent,
tangential series of ramblings,
um.
I think I'd quite like a day.
To see what that was like,
but I couldn't.
I could never do that.
I can't go back to not having it.
And
I am
in many ways,
almost cured
in that
mine has been benign and
very,
very,
very dormant for a long time.
And I'm probably as close.
To being
Permanently in remission.
As,
as,
as anyone can be.
But
there's always gonna be continent pants on the shopping list.
Up-big
Home
Explore
Reporters
About Us
Log in
Facebook
Twitter
Youtube
