So here I am again doing something that I enjoy doing.
Writing about the ramblings of my mind and life. I have so many topics that I want to write about. I actually
make a list of them as they come to mind. Today was the first day I have felt
well enough to sit at this computer and do some writing. Wow do I wish I still
had a laptop! But I suppose it is a good thing that I do not, because I would
probably write too much! And then there would not be much depth and meaning in
my words as time went on.
Considering that this blog is named Dystonia Dawb, I thought
I would write a little about that, and later write about all the other things
on my list. Or maybe (evil grin) I may just write two posts today!
So a typical day for me, is quite interesting(to me) because
all of my days seem not typical,
because it can change, but they are boring lately since I have been on this
dreadful medical leave! Every day for me has a challenge, one in particular
sticks out. It is the simple task of being able to get out of bed, I am not
talking about waking up. It is the task of literally feeling well enough to get
out of it! I am writing about this because I think it may shed light on what
exactly I am going through and give people a bigger understanding of Dystonia,
specifically Dopa Responsive Dystonia. At some point I will go through a
timeline of all of my strange symptoms over the years, but I don’t feel that is
interesting at this point.
So on a typical day I wake up (wait that is a typical day for
everyone if your alive ha ha) , the time may vary depending on what time I
actually fall asleep. There were several days that I slept way longer than I
wanted to because my medications make me so tired.
Ok so here goes!
1.
I wake up and take my medication, one for my
Dystonia ( sinemet ) and two others for pain Neurotin and Cymbalta. (these may change because of my new
diagnosis, I am hoping for some other pain medication because some days it is
absolutely umbearable).
2.
I wait for my meds to kick in, this is when it
gets a bit complicated because on any given day the pain medication may or may
not work. The Sinemet always kicks in to some point (I have found my second
dose of the day is the best). The neurotin, well that is hit or miss, I
normally hope it will help. The Cymbalta is good because I has a counter effect
to the neurotin, it wakes me up. The neurotin has a tendency as well as the
sinemet to make me want to fall asleep. This is horrible! I say this because
who wants to sleep their life away after sleeping all night! What makes matters
worse is when I get up in the morning, every morning I only feel well for about
5 minutes. Just long enough to get up and use the bathroom and brush my
teeth. Then the pain throughout my
entire body, to include the bottom of my feet kicks in.
3.
I lay in bed and hope the neurotin will work…
about20 to 30 minutes after I have taken my sinemet I will eat some breakfast.
I do this so that I ensure that I get the best possible absorption into my body.
I normally will have a couple cups of coffee with it. The Sinemet makes me very
drowsy.. blaaaa and some days very dizzy as well. But on a good day I will only
be drowsy, because when I am dizzy
while laying in bed, even if I only eat oatmeal I will be nauseated as well.
The reason that it makes me dizzy is because it fluctuates your blood pressure,
my blood pressure will go very low. And when I walk, even though I can walk, I
have to use my cane.
4.
So on a typical day I am in pain all over my
body, even the soles of my feet for the first (Aprox) 3 hours , meaning the
worse(most days, throughout the day). So I sit and read and drink coffee until
I can get up.
5.
I take my Sinemet 4 times a day and Neurotin 3
times a day so at some point I have to eat lunch! This can be tricky especially
due to the timing of my medication and being dizzy and nauseated. So what does
a girl do? She facebook stalks her family and friends to pass the time ha ha.
And I do a lot of reading about several different topics ( I love to read).
6.
4 hours later I take my Sinemet again and if I
have not eaten lunch I eat around 20 to 30 minutes later I will have a light
lunch.
7.
Ok this is on a good day (Today happened to be
one of them) I will do my exercise routine. It consists of stretching and
cardio on my exercise bike. Today I did a little extra which is against my
doctors orders. But I felt like I wanted to do a little extra so I did sit ups
and push ups.
8.
Then I do house cleaning. I enjoy doing this
because I want the kids to be able to come home to a calm, clean and relaxing
environment. Although there are chores for them to do of course. But I try not
to have so much for them to do
.
9.
I start preparing for dinner. This happens
before the kids get home. And some days it is earlier than the rest of the
days. But I start planning main
course and side items etc.
10. Kids
get home from school. I take the time to talk to each of them. The time can
vary depending since each child gets home at a separate time. But I can always
count on the first thing they do when they come home is come to see me, this is
a good thing. And this is all 4 of them. They come and talk to me. Some days
may be different etc. Depending on chores.. ie. If their rooms are destroyed
etc. (we are working on that part ha ha)
11. Then
I cook dinner.
12. Evening
time is different, like tonight, we are going to talk, watch a show and do some
crafts. And Grace is going to make
brownies ( she bumped her leg on the counter climbing tonight, poor thing, I
have an ice pack on it now ) Did I mention I do first aid as well? LOL
13. Of
course more meds etc etc.
14. Bedtime
is different because some nights I fall right to sleep, some nights I toss and
turn. Or if I fall asleep sometimes I wake up around 2 am in horrible pain.
So maybe now you may be able to see how a “Typical” day may
be. I am not sure it I was able to show the ups and downs of it all. Of course
there are other things that happen in between like phone calls, or possibly the
kids arguing or etc. ha ha.
For me each day is met with a challenge, here are some of my
questions I face:
1.
Will I hurt and be in pain all day today?
2.
Will my Sinemet work as well today?
3.
How stiff will I be today?
4.
What kind of stress will I encounter today that
may make me worse?
5.
Will I be able to exercise today?
6.
Will the kids like dinner?
7.
Will the cold weather make my symptoms worse
today.
8.
Will I be able to do anything today?
9.
Will I accomplish anything?
10. Did
the kids have a good day?
11. How
bad will my pain be at nighttime?
a.
I tend to have a cycle, pain in the morning,
kinda normal mid day, and bad pain in the evening. It seems to be this way
everyday. I smile through it all for the kids.
I am sure there are other things that arise. Now that I
think about it this post is very boring and I wish I had written about
something else. At least now I am able to drive, the medication is helping.,
but it is not perfect. Some days it works better than others. Some days it’s
like it’s not working at all. People I believe think I have found a cure all.
But the sad fact is, no I have not. This is going to be something I deal with
for the rest of my life. Yes, the medication makes it better, but I will still
be disabled to some point for my entire life. And this leads me to my 2nd thought.
Have you heard about the girl with MS here in NC. That falls
because she cannot feel her legs after she runs? I seen the story about her
recently and it give me a lot of hope. If this young girl can run, and win
competitions, then I can do the same thing! I just need to fight though the
pain! Yes her conditions is different, she has MS and I have DRD. But the fact
that she was able to run so hard, and so fast knowing that at the end she would
fall, be scared because she can not feel her legs is a great inspiration to me.
Today I had that in mind. I felt horrible, I spent the usual
3 hours in bed wondering when my body pain would end. I finally got up and
exercised, even did a little more than I should have with her in mind! Yes, I
will pay for it, but it will be worth it! Each day I will get stronger!
Because of all the muscle contractions some of my muscle
groups have not been used in so long they are actually weak. And I know some
have shortened, especially in my neck. So I must do these work outs and get
them back in shape!, yes I take it easy but at the same time, I want to just
get better!
My doctors give me guidelines I know. But I know that I need
to work hard on my body so that is what I am doing (slowly each day), even if I
will never be completely normal. My minor in college was in Health and
Wellness, so I am in the process of making my own unique at home routine, that
will not put too much stress on my body, while at the same time I will get the
most benefit out of it. I am going to start PT soon, but I have to wait until
January to do it, because of financial reasons and because I was just newly
diagnosed with DRD. PT routines are different depending on the condition. I am taking in mind that I have to take
it easy when I do my routines. I can not run any longer, but I do have a nice
stationary bike that has lots of options that someone gave to me, and I use
that for my cardiovascular fitness.
Well everyone, welcome to my typical boring day. I am in
horrible pain each day. I probably could have went into more detail, but I
think this covers part of it.
I always say God does not give you anything that you cannot
handle. And apparently he thinks I am pretty strong! So here I am, just me, writing
about this boring stuff huh.
I do have medication that works, but the dosing needs to be
tweeked, my pain still needs to be under control, and I have to get my body in
shape. I say body in shape because now the medication will enable me to get my
whoel body in shape LOL. I remember when I ran 3 to 4 miles and my legs would
be in such horrible pain! I would push through it! Not knowing I had a problem.
I looked in shape LOL but ummmm I was Dystonic, so even if I did not work out I
looked like I did Ha Ha. I have
always been thin, no matter what I did. And I remember when things got really
bad the girls (my daughters) wanted to know how I was so toned withought doing
anything LOL This is Dystonia my friend, my muscles want to be in a tense state
at all times, all on their own! My muscles want to twist my spine, stiffen my
gait, and make me fall.
But I WILL NOT let that happen! I will do what my doctors
say, take my medication, and take this set back and use it in someway to give
someone hope and make myself and others stronger! I may look like a robot with
my stiffness on somedays! But I am not, I have feelings and emotions that
surpass all of my understanding!
I hope everyone has a blessed week! And I will write again
soon!
Merry Christmas!
Here is a Video of the Girl with MS that runs! It is so inspirational! She gives me hope to make it through my pain! to make a difference some how. And even at my age to follow my dreams!
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