“How do you do it?” A question I hear very often! In all
honesty, I don’t know how to answer that question. If you don’t know “My Situation”…
let me shed some light on it for you.
I was diagnosed two-years ago, August 2010, at the age of
22. I will be 25 in less than a month and it’s not been an easy journey, thus
far…
I have two kids, both boys, ages 3 & 6. I have been
married to my best friend for almost 7 years and I am a patient advocate for
MS. From what I understand, I didn’t take me long to want to do something about
my MS. I get confused by this statement at times, because what was expected…?
Obviously I was upset and mad and scared and I still am. But am I supposed to
stop living my life because of MS? I couldn’t just stop being a mom for my
kids… to grieve with my diagnosis. My family and close friends know that I’m a
very stubborn person, so I wasn’t just going to “lie down and take it”… so to
say.
Since being diagnosed, I am now on my third DMD, Copaxone. I
was diagnosed two-weeks after receiving my Associates Degree in Criminal
Justice. The day before my interview at the county jail, I was diagnosed,
actually. I’ve been denied Social Security numerous times (because I’m not
blind and/or deaf from what the papers say). After my diagnosis I had decided
to start back at school after a semester break, to work towards receiving my
Bachelors in Criminal Justice. Well, I’ve stopped going to college since then…
Not because I wanted to… but I was going to get “dropped” if I didn’t. I had
started off at the University (that I did from home) in the honors program, and
after one semester, I was barely passing getting very close to the “minimum”
GPA.
I can honestly say, if it wasn’t for the support from my
family and friends… I wouldn’t be doing anything. I’ve found ways to make
things easier for myself around the house and with the kids… but that’s not
even a “fix” a lot of the time. It’s the help I receive with the kids and the
house, etc. that makes life easier.
When it comes to me having MS… it’s made me look at life
differently and I have since changed my attitude on almost everything. I have
“accepted” my diagnosis, but that doesn’t mean that I’m not still… angry,
upset, depressed, confused… the list is endless.
How can someone completely “accept” his or her diagnosis of
an illness, when there is so much unknown about it. They don’t know what causes
MS, they don’t know how to stop the attacks and they don’t know how to cure it…
Everyday you wake up, you honestly don’t know what to expect. I guess that’s
the truth in everyone’s life… but I’m talking about simply getting out of bed.
My first thoughts are, “What’s going to bother me the most today?? What’s going
to hurt me the most today?? Will I need more help than normal??”
So while I’m mad… it’s like a confused mad, cause I don’t
even ‘know’ what I’m mad at… Mad at my body for betraying me? Yeah… that’s a
big one. Everyone is always worried about someone they love betraying them… but
what if it’s your own body and no one has answers as to WHY! Yes, they know how
it happens… but WHY? That’s the million-dollar question.
Then there are those statements, “Well, you did it
yesterday, why can’t you today?” “You could walk yesterday.” “You were full of
energy yesterday.” … Yeah .. well thanks for rubbing it in my face that my body
can do whatever it wants when it wants to because I have MS… I’m not trying to
be mean… I know that other people are clueless as to what those with MS have to
REALLY go through… but sometimes it’s just like… I just don’t want to hear any
comments… How about… “How are you doing today?”… “What’s in the news with MS?”…
Things like that.
Yeah I know, people who have MS talk about it a lot… and it
gets on some peoples nerves. Well this is for those “some people”… If you had
or have a kid… would it be rude of me to think you talk about your kids too
much? Yes… it would because kids are LIFE CHANGING. Just like an MS diagnosis,
it’s LIFE CHANGING… except the fact that kids are a blessing and MS… well… it’s
a pain in the you know what.
So in all reality, there is no explanation as to “How do I
do it?” It’s “Why do I do it?” I’m not going to stop living my life because of
MS… that’s just not who I am. Yes, I’ve had to change my life around… yes it
keeps me from doing things… but what OTHER choice do I have? If I was letting
MS take OVER my life… I would live in a place that is never too hot and never
too cold & alone. Because the MS “triggers” are thought to be Extreme Heat,
Extreme Cold and Extreme Stress. So obviously, Texas isn’t the best place for
me… so I’m supposed to up and move away from my family and our established
lives here? Yes, I can’t stand the heat… but you have to think reasonably.
If people looked closer, they would realized that in the
summer time, I don’t leave the AC much… I’m not trying to be rude… I’m just
trying not to end up in a wheelchair… again.
Think of me as a “used” battery… and those that are not
sick, are a new battery, right out of the package every morning. We all know,
that used batteries do not compare to the power (energy) of a NEW battery. So
while those who are not sick, wake up refreshed and have enough energy to make
it through the day doing “the simple tasks” of work, school, errands, kids,
house work, etc. Yes they are tired when they get home, but they did it… they
aren’t going to wake up tomorrow and be in excruciating pain from it. Well,
those with MS (the used battery), wake up not full of energy, but completely
exhausted, no matter how long they slept. Then we have to make it through the
day, and we just have to be housewives, like myself, but it’s exhausting… if we
had to push ourselves to do more than simple little things (like go to the
grocery store), we know tomorrow our “battery level” will be lower and that
will not make things run as smoothly… meaning our bodies will tell us, “Hey,
you did too much yesterday, so you are going to pay for it for a day, a week,
maybe more.” Does that make it easier to understand?
Do I push myself, knowing I will pay for it… sometimes but
it’s usually worth it. To have that one-day where, I know I will get beat to
hell by MS at some point, but at least I did what I wanted to do that one day
and I had fun and I was “normal”. That doesn’t mean that my symptoms have gone
away for that one day, there is no “on and off” switch. It just means that I
pushed through my symptoms. Now if I was to “push my limits” everyday… that’s
just plain crazy.
I don’t know what my future holds… I never knew I would be
living with an incurable mystery disease… so I’m taking it day-by-day. I
figure, I’ve already been complete wheel chair bound, had one side of my face
paralyzed. Yes, I’ve lost vision, hearing and I’m weak on my right side, it’s
never improved… there is no guarantee to “recover” from a flare. I’ve been to
speech therapy, to help me talk “normal” again; I’ve been to occupational
therapy, to help me find ways to be a “housewife” with my limitations; I’ve
been to physical therapy to help me regain my strength and balance. Notice I
used the word “help” and not “fix” … I can help myself improve my quality of
life, but I cannot fix the damage that’s been done. So what I’ve been through
in the past with exacerbations, it can happen again… I don’t necessarily have
to have a “relapse” meaning; I don’t have to get a NEW lesion, to go through
what I’ve been through before. If that lesion gets irritated and inflamed, I
just might have to start all over again… and that’s something I have to
live with everyday.
I choose to try and be as positive as I can, but even the
strong break down. I usually let out my anger and frustrations when I’m alone…
but that’s how I get it out of my system when I’m overwhelmed with the feeling.
So, you might see me as ALWAYS positive and ALWAYS happy… I try to be around
other people, because I don’t want other people to have to feel what I have to
feel… to know what I have to go through everyday. By telling you all of this,
you can get an “understanding” of what I personally go through, but you will
never know.
Being a mother to two wonderful boys, a wife to an amazing
husband, a loved one to my supportive family, a friend to my amazing friends
and a patient advocate for all of those who live with MS, is “Why I do what I
do…”
xoxo
Ashley
