If You Don’t Use it You Loose It

A little over halfway through
February of 2014 and I am just posting on my blog for the
first time since December 25th of 2013. Why? Where have I
been? Well… here… but not here. I needed an “MS break”, a
break from my life with MS, a break to try to focus on me
and starting a new direction towards a new life. Also, a little break from social media and
blogging, I couldn’t stand to spend another minute on the
computer! I needed time to think, time to figure out what the next
step of my life is going to be but before I get into that let’s do a
little reflecting.

In December, the day of my
infusion I think, I started physical therapy to try to improve my
walking since the heavy stepping on my heels was causing me lower
back pain. I knew the longer I walked incorrectly the harder it would
be to correct my gate further down the line. I have been going to
physical therapy twice a week ever since and we focus a lot on core
strength and balance. It has helped a lot so far and I do
enjoy going not only for the sense of having something to do and
somewhere to be but because I have been noticing actual progress! I
can’t remember the last time my lower back hurt from walking and my
balance is much better; I can stand on one leg (for example) much
longer than I could before. I recently started working on standing on one
leg while catching/throwing a ball, something I could never have done
before. It is also much easier for me to put on my pants without
sitting down, sounds silly, but when you have had to sit and get
dressed for so long and all of a sudden you can stand while getting
dressed? It feels good! It’s amazing what effects balance has on everyday life, even on things I didn’t think had anything to do with balance like running. It seems obvious now that it’s not the spasticity in my legs keeping me from running as much as it is my balance. I am learning a lot!

I also started school in
January; it was just one class but because it was winter session we were cramming an entire semester in to just 6 weeks. Very fast paced… I
took this class because I wanted to see how well I could fit back
into ordinary life and I discovered many little challenges in
the way of my acclimation. I was taking a simple introduction to
algebra class, I figured it would be nice and easy since in high
school I made it up to Algebra 2 no Problem… but… wow… Growing
up in school they always told us “if you don’t use it you loose it”
and I hated hearing that. Thing is, it couldn’t be more true. “The
brain is like a muscle, you gotta work it out” and if you stop
working it out it begins to atrophy like any other muscle. After the
relapse that changed my life in 2012 I found myself in a physical
rehabilitation hospital trying to curl a 1 pound weight with my
wrist. I could barely do it. It took a while but now I can pretty
much handle what I could before and this is a perfect representation
of my brain. I may have made it up to algebra 2 before but
because I have not been using my brain like this since my relapse, I
am back to pre-algebra, back to a 1 pound weight. I sometimes felt like I could barely do it anymore but I knew that if I kept on working at it
like that 1 pound weight, I would eventually be able to do so much
more.

The difficulties I encountered in school went beyond the cognitive skills of factoring, determining
percentages, and solving for X; sometimes simply “adjusting” to
life among society was difficult. The responsibility of being
somewhere on time, finishing work by a set deadline, dealing with
annoying people that couldn’t simply be “blocked” with the click of
a mouse, and just balancing stress was a bit overwhelming at times. I was not used to dealing with all
the little things so they just built up until it was one big pot of
stress. I did OK with it most the time but it was definitely…
new? Well, it had been several years since I had worked a job or gone to
school really so I had grown “comfortable” with almost zero
responsibility in my life. I liked having some responsibility back and I want more
but it’s definitely going to take some adjusting.

One
of my biggest obstacles lately has probably been a lack of energy and
inability to concentrate. This led me to start playing with Nuvigile
again… I was on Nuvigile in the past for fatigue and at first it
worked great, they say “it’s like speed” and if I had to imagine
what being on speed felt
like this is it. After a while though I started feeling like my heart
was racing out of control and I hated it, it felt horrible, (not to
mention the insomnia was wretched) so I stopped taking it. This time around I was treating it like a loaded gun; when I took it I took the pill the split second I
woke up in the morning so that the effects had more time to wear off by time it was time for bed so that hopefully I could fall asleep. Most days I only took half
(75mg) which seemed to keep me up just barely which I found to be
better than feeling like my heart was about to burst out of my chest.
Sometimes I would take the full 150mg but sometimes no matter how early I took it I still couldn’t sleep that night,
even with Temazepam (not to mention it was a guaranteed headache).

Either
way, when I did take
Nuvigile, I usually had to do something physical to help burn off the energy otherwise I felt like I drank way too much coffee without the
crash. So I started some small projects in the back yard; nothing
burns energy and fights stress like using a shovel! After a while I
started doing my yard work even if I didn’t take Nuvigile because
sitting still doing home work all day made me so ancy and working in
the backyard was a good solution for that and ensured I slept well at
night. It also fulfilled my need to feel like I had created
something, accomplished
something. I always enjoyed working with my hands and doing
“do-it-yourself” projects so these projects in the backyard helped me
feel like I could do something. My best friend also moved back to
Moreno Valley from Pomona so now that it doesn’t cost $25 in gas and
take 2 hours out of my day to drive there and back we have been
hanging out a lot and working on these projects together. I finally
can sit with someone
and talk over coffee.

The
small projects I had started in the backyard have turned into larger
projects which felt good at first but then started to depress me… Or make me feel guilty? I
was standing there looking at the work I had done when it became
clear; “I should be working, I should have a job, I shouldn’t be on
social security benefits anymore”. At the same time it made me
happy because I was clearly back on my way to a life of independence.
A couple years ago I was being told I “should just get used to the
wheelchair”, I didn’t know if I would really walk again, and now I
was putting in sprinkler lines and building a pathway while going to
school. I guess I felt a moment of depression/guilt because I felt like I
should have done more sooner
and because I knew it would still take some time to get back into a
job and start making money on my own. Now it is just motivating; “If
I can do this than I can work a job”. So I will be working on
finding a job soon but I wanted to take care of a few things before I started the hunt. The thought of my
transition from living on benefits to actually working again is scary but exciting. I just hope I can find an employer who is willing to work with my MS because I definitely can’t hide it. I am not
sure how it works but wouldn’t I be a tax write off? That is some
decent incentive…

Well what have I taken from this? I finished a class at the local JC. I didn’t drop out, I finished, all the way through. It was difficult but I did it. I stopped taking Nuvigile again because it was not worth the occasional insomnia or the headaches so it looks like when it comes to fatigue, I need to learn to deal with it some other way. Coffee helps a bit but it still has it’s downsides.

One last thing I wanted to mention before I end this, I had my 13th Tysabri infusion on February 10th and I finally talked to my neurologist about how much of an issue the noise sensitivity/sensitive startle reflex was. I had been looking into it all I could but everyone online says it’s “hyperekplexia” which when you really read about it, makes zero sense. Hyperekplexia effects children, they are born with it and it goes away by the age of 2 (usually).  I started looking into “Hyperacousis” and sure, the description of the patients dislike of sounds was identical to mine but it didn’t explain the startle reflex. Turns out what I have is called “Myoclonus” which is a symptom I have heard about before but I didn’t know there were more than one type! It’s not just muscle jerking, I have “stimulus sensitive myoclnus”. This means things like sudden sounds, lights, or someone walking into the room causes an exaggerated muscle jerk response.  So to any bloggers reading this, don’t just read wikipedia or some other guy’s blog who thinks he knows the answer, check multiple RELIABLE sources because this is how incorrect knowledge gets spread!

I have been taking Clonazepam for this myoclonus symptom and… it seems like it is working but I am still not 100% sure. I need to have someone follow me around with balloons all day and randomly pop them to see how I react haha. A $2 prescription for a symptom that has mad my life hell… Is that really all it takes?

SIDE NOTE; As you can see I have been working on re-creating my blog. I may have launched it today but there is still lot’s of stuff missing. In time I will fill in all the blanks so for now, some sections (like pretty much everything in the symptom drop down menu) may not work just yet. My goal was to make the blog more organized and easier to navigate and I think** that this set up is much better than what I had before! So I was focusing on the set up and now I have to finish a lot of the actual content. Soon!

10 thoughts on “If You Don’t Use it You Loose It

  • February 17, 2014 at 10:09 am
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    I haven't caught up with you for so long Matt, it's great to read about the way you're taking control of your life, well done!

    Reply
  • February 17, 2014 at 6:49 pm
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    Matt, are you still having trouble walking? Lifting? Does Medicare pay for Nuvigile?

    Reply
  • February 17, 2014 at 6:56 pm
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    Great to read matt that your doing good and trying to move forward in your life. Have you done therapy or the ms help groups? I know therapy has helped me a ton to help me get out of my ms rut and not let it hold me back or stop believing in myself.

    Reply
  • February 18, 2014 at 1:27 am
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    Walking is good, physical therapy is helping a lot. I can jump! I am shooting to be able to do a short jog by the end of the year, its just my balance holding me back! I never did any group therapy, it's just not for me haha

    Reply
  • February 18, 2014 at 2:52 am
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    Good to hear from you, Matt. Keep up the good work and stay strong.

    Reply
  • February 18, 2014 at 2:52 am
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    Good to hear from you, Matt. Stay strong and keep up the good work.

    Reply
  • February 20, 2014 at 5:32 am
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    Dude, be careful with clonazepam. It has some awesome benefits, but people who get dependent on it go through hell trying to get off of it. Other than that, congrats on finishing your class. When you go back after a break, the first one is always rough, so it should be all downhill from here.

    Reply
  • February 20, 2014 at 1:22 pm
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    Haha I have been on it for a long time in the past and had no problem getting off. It seems lots of meds that should be hard to get off I can stop cold turkey no problem. Norco, Vicodin, Percocet, Prednisone, so I am not worried haha. But yes, thanks for the congrats, just glad I made it!

    Reply

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