Once in a while,
I think it would be really great if multiple sclerosis
was a living breathing entity and I could tell it exactly how I feel about it.
This is an open letter to MS with what I would tell it if I could.
Hi there.
Welcome back to MS 24 73 66. I'm glad you could join me today.
The last couple of weeks have been
really unusual.
I started a new MS Medicine
Ovis
about nine days ago.
I was,
I was really worried about doing it.
Um I couldn't think of much else leading up to the infusion except for the fact that
I had had an anaphylactic reaction
to Tysabri,
which is a medication that has a very similar sounding drug name.
Okra
Zuma
is
Ovis and
Nail
Liza
is Tysabri.
They kind of sound the same.
So I was really worried about it.
So like I said,
this is a letter to MS
so I can tell it how I feel
dear. M si want to tell you some things.
I have been waiting a very long time to get out in the open.
You make me feel less than
I was always a pretty confident person.
I mean, sure, I had my moments who doesn't,
but for the most part I knew who I was and what I was capable of.
And to be honest,
I miss that confident woman.
Now,
I don't know if I'm going to be able to walk
to the bathroom without help or even get out of bed.
Some days.
I'm not entirely sure what I am capable of anymore.
Some days I can do a lot
and sometimes just brushing my teeth is all I can guarantee.
Since you've come into my life, I've had to change everything
and the way I do it,
I can't clean my house.
I can clean that part of that room.
Maybe
if I don't forget what I'm doing halfway through
and leave it at an even bigger mess than I started with
when I cook. Now
I have to take breaks in the middle of preparing meals.
You can't just get everything done at once and be able to enjoy it.
If I try that,
I'm too exhausted to care about the end result.
Lately,
when my husband gets home from work,
he will either have to fix dinner or clean the kitchen
because I can't really do both of those things.
Do you think it's ok that he has to do all of these things after he's been at work all day
just to help me out
because I really don't think it's ok at all
he does way more for me
than he should have to
because of the ways MS has affected me.
I am no longer able to drive
and I have to ask other people,
usually my husband
to get me to appointments or even just out of the house. Once in a while,
my husband has to take time off of work to get me to appointments with my doctors.
He does the grocery shopping.
He usually goes alone
unless I'm feeling ok and go with him.
And that's not very often.
You have also caused other problems that most people wouldn't think of.
Like when I can't remember what to do to put clean sheets on the bed
or when I
can look into my husband's eyes and not have any idea what his name is.
And then there's the un
identifiable pains and aches
that are just there
that I can't explain what actually hurts
or what it feels like.
How can being numb also be painful.
All the invisible problems that nobody really sees
like because I can still walk,
but it's not easy or pleasant. Most of the time
I had so many things I wanted to accomplish in my life
and you have taken most of them from me,
not just physically unable to do them.
The actual memory of what it was I most wanted in life.
Most of my thoughts and memories from my life are just gone.
Sometimes I'll get a fleeting thought of one of them
and remember for a little while,
but it's temporary.
You really are a cruel life partner.
And I wish I could break up with you.
Sure. You taught me how to ask and accept help from others.
But only because I have to.
And if I don't,
I can't do much of anything
and I hate having to do it. I want my abilities back
when I think about managing my MS.
What I feel most often is hopeless.
I have tried so many options and have had horrible results from some
or no results from others.
I see no reason to keep trying these potentially dangerous
or useless medications.
Only to be disappointed again,
I'm not getting my hopes up for this next one.
My
chances are it will either make me sick
or not be effective for me.
I guess I just really want you to know
that my attitude,
my ability to laugh at you
and what you do to me
and my inability to give up and let you win
isn't changing.
Really what I want to tell you
is to shut up and sit down.
I have MS
but it doesn't have me
sincerely Vicky.
There you go.
That's the letter I wrote to multiple sclerosis.
You should try it,
whatever it is you're dealing with,
you don't have to share it with anybody
or you can share it with everybody. Like I just did
feel free to share it. With me.
Thanks for hanging out with me today.
Hopefully you learned a little something about N MS
but more specifically about me.
If you liked this video,
hit the like button
and if you like my videos or wanna keep
hearing about MS from me,
hit the subscribe button.
Remember
life doesn't stop just because you have to.