The last several months have been quite a challenge for me.
I have felt myself slipping further and further away from who I really am. It’s
hard to admit that I am not as healthy as I once was. Yes, I knew that I
couldn’t run my daily 1-3 miles anymore, heck; I could barely walk to the
mailbox and back anymore. It hurt to drive; it was even scarier than it was
painful. My balance was off, in a perpetual state of drunkenness. However, I
couldn’t admit that I was that bad off. I still had use of all my bodily functions,
my arms and legs. It was when my brain started to go that I decided I had a
problem. My desire to write vanished, crazy because that is one of my passions.
I could no longer focus on the people talking to me. I used to be the queen of
multi tasking, able to focus on four or five conversations at once with
background music. So like I said, it was hard to admit that I had let myself go
to such an extent.
I am ashamed of myself. I let everyone around me worry.
Every day someone would tell me that they could see it in my face, or hear it
in my voice or tell that I wasn’t feeling well by the way I was standing or
walking. However, in my arrogance, I thought I was the master at disguising how
I really felt.
My emotions were deadened. I was starting to feel like a
shell of my former self. My family could see it, my friends could see it,
people I barely knew could see it, but I sure couldn’t.
After months of steady decline, I was finally able to get
through the red tape of insurance and specialty clinic miscommunications. It
didn’t help that I am the only patient at my current neurologist that has M.S.
and goes through a certain military insurance. The process was just as new to
them as it was to me, so rather than getting the needed medicine in a couple of
days, it took nearly two months. Regardless, I finally started my treatment of
1gram of Solu-medrol per day for 3 days.
The first day the home health nurse came over, started the
IV line in my wrist, and showed my husband and me how to do the infusion for
the next three days. I expressed to him how stupid I felt for doing the
treatment because, like I said, I wasn’t that bad. He said, “The patients can
never see how bad they really are.” After the first day the spasms in my legs
stopped. After the second day, the pain that has plagued the left side of my
body for almost three years went from a consistent six level of pain to hardly
a one. The numbness and tingling… gone. After day 3 well, another home health
nurse came to take out the IV line and took my vitals. He asked me my pain
level. For the first time in years, I really had to think about it. Did I hurt
anywhere? Well maybe my bones were still a little “cold” and achy from the
infusion. However, the pain was pretty much gone.
So here I am, the day after the last infusion. My brain has
rebooted in a sense. I feel like the lights are turning back on. I can think
with a conversation, a video game, a crackling bag among other noises going on
around me. I don’t need silence to make my brain function anymore. That’s nice.
My back is a little tender, but it goes through times of intense pain to none at
all depending on time of the year. Anyway, now I wonder. What was it that was
holding me back from trying to do something about this earlier? Was I trying to
do it all in my own power, relying on my own strength?
I took a nice training walk with my Tater today. He is
turning into an amazing service dog. On our walk, he heeled exactly where he
had to be and obeyed my every command. He is getting better prepared to help me
for when some day, this medicine wears off and I will need his services again.
When I first got my diagnosis in October, I thought that I would train him just
in case I ever needed him. Fully expecting never to need his services, I was
wrong. I needed him much sooner than I expected. I was to a point that whenever
I got up, he would get up and walk me wherever I needed to go. He is that good.
I’m not stumbling around, for now. It has only been 4 days since that first
infusion. I may have pushed my walk a little too fast today because my calves
are burning. But I read that the results of the medication aren’t always
instant. So are there only good things to come?
I don’t think that my writing is going to be where it needs
to be for a very long time. But at least for now I am getting my feelings out.
Today February 16,
2015, I am hopeful. I am optimistic that I can and that I will get
better. There may not be a cure for Multiple Sclerosis, but at least there is a
treatment.
Thank God for a treatment. The tears that I have not cried,
the stages of grief that I have not gone through overwhelm me now because I
feel better. I have to admit that yes, I really do have M.S. I really am sick.
But I really can feel better.
I don’t know how I can be the light I want to be when I let
myself sink so low. How did I let myself hide away under the pain? How could I
deny that there was anything wrong? I can’t ever let myself come to the point
where I was just a week ago.
I choose to be happy. I don’t want to be the nothing that I
was becoming, dead inside, dead to everything around me, hiding from the pain
inside myself. I was becoming M.S. I was letting it take over me. How did I let
it take over me like that? I thought I was stronger than that.
What good is writing it down? It doesn’t feel any better to
get it out. I still feel the same. I still feel ashamed and tired. I feel
tired but like I can’t sit and rest. I can’t just sit. I have been still far
too long. I am restless. I am anxious. I want to build, to create, to be more
than I am right now. I want to change, I want to please. But I am not being
pleasing. I am being nothing.
It is time to reignite. To shine bright and never let this
disease get me down again.
“God is our refuge
and strength, an ever present help in trouble.
Therefore we will not
fear, though the earth give way and the mountains fall into the heart of the
sea, though its waters roar and foam and the mountains quake with their
surging.
There is a river
whose streams make glad the city of God
God is within her, she
will not fall; God will help her at break of day. Nations are in uproar,
kingdoms fall; He lifts His voice, the earth melts.
The Lord Almighty is
with us; the God of Jacob is our fortress.
Come and see the
works of the Lord, the desolations He has brought on the earth.
He makes wars cease
to the ends of the earth; He breaks the bow and shatters the spear, He burns
the shields with fire.
‘Be still and know that I am God;
I will be exalted among the nations, I will be exalted in the earth.’
The Lord Almighty is
with us; the God of Jacob is our fortress.”
Psalm 46 (NIV)
Where does this all leave me? With the knowledge of what
needs to be changed. How do I change it? I will let myself feel and take the
treatments when they are needed, no longer denying that I am sick and knowing that I can’t
do everything on my own. I have to remember that there are people out there
that love me and want the best for me. If I don’t accept their help, I am not
allowing them to receive the blessing of helping me. Because my way of showing
love is to give or do things for others, I must allow others to show love to
me by allowing them to help me even when I can’t seem to acknowledge that I
need help.
What is the bright side or encouragement of the cloud of MS?
There is a way out of the pain and darkness. All you have to
do is accept the hand that is reaching out to you. With that, I leave you with
a little blessing that always speaks to me when I am feeling… unsettled.
‘Be still and know that I am God;
I will be exalted among the nations, I will be exalted in the earth.’
