Was Feeling Better – Exercise, Diet, Tysabri and IVIG

So the other day I had a bit of an episode. I took it easy
for a few days and felt back to “regular I can’t see and I am dizzy”. That
episode made me snap. I was so angry at my situation! Something has to change because I can’t live a
life like this!
So I have been getting up at 5:00am to work out. Exercise. I
am slowly trying to change my diet. Lots of little things to at least make me feel better because I figure I will heal
faster if I am generally healthy and in shape. Stress reduction is a huge one
that I need to work on. So since I am back with my parents I am sleeping/living
in the loft. The loft has a balcony and it overlooks the downstairs rooms. I
put up Styrofoam insulation to help keep it cool. Then we put up really thick
black out drapes over the Styrofoam wall and between the two it help cut down
the noise while I am trying to sleep so that cuts some of my stress but there
are still other stressors in my life I need to learn to deal with (properly) so
I am slowly working on that on top of diet and exercise.
On the 5th I had my  27th infusion of Tysabri which was
my 4th infusion since I stopped my Tysabri in Colorado resulting in
this rebound. Right now I am having my 3rd IVIG infusion and I will
be starting Ampyra soon so hopefully between all of this stuff I will start
improving sooner than later. This has been going on since January; it feels
like it has been for ever and I am starting to forget what life was like when I
could actually see straight, get around, do stuff on my own, and drive. Just
trying to be patient but I have a feeling this will go on for the rest of the
year since I we are almost halfway through and not much changed on my end; I
have mostly been learning how to adapt and live with this.

Today I woke up feeling a tad more dizzy than usual. My
vision just a little worse. I am so fatigued but then again I have felt like
this for a few days despite taking Ritalin and a cup of coffee in the morning.
By about 2pm I am struggling to keep my eyes open. It’s only 10am and I can’t
stop yawning! I hate this, not sure what I want to do just yet… Ugh…
It’s annoying because when I don’t feel fatigued I FEEL like I can physically do so much but thanks to this vision I just can’t. Makes me feel like the actual me is trapped in this stupid body, like a cage.

8 thoughts on “Was Feeling Better – Exercise, Diet, Tysabri and IVIG

  • May 9, 2015 at 9:10 pm
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    I'm really sorry you're having such a rough time of it. I don't know anyone who is more brave and determined than you are. I do want to mention something that potentially could be causing issues for you. I found out many years ago that things like plastics, Styrofoam, formaldehyde, etc. would worsen my MS symptoms. So I avoid them. In your case, you have created these Styrofoam walls in what potentially is the hottest room in the house, producing a more intensive out gassing of the chemicals in the Styrofoam. Just think about it. I would hate for you to be doing everything else right but have it be trumped by the chemical load in your living environment. Good luck

    Reply
    • May 10, 2015 at 2:52 am
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      Trust me, the thought crossed my mind because I REALLY try to avoid plastics and any kind of carcinogen I can. I make it an effort to keep this room cool so nothing heats up and when it does get hot I stay down stairs till it cools down. Either way, all this health crap was just the same before I put it up so I don't think it is an issue.

      Reply
  • May 14, 2015 at 5:29 am
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    Greater in combat
    Than a person who conquers
    A thousand times a thousand people
    Is the person who conquers himself.
    (Dhammapada verse 103)

    Kudos to you for making changes in your life for your health and happiness. It's always difficult adopting new habits. Keep it up and make it your new normal. Peace.

    Reply
  • May 14, 2015 at 2:20 pm
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    Yes, change is difficult and it scares people but change is sometimes necessary

    Reply
  • May 15, 2015 at 6:28 am
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    Hi Matt,

    I am going to be honest with you here. I am a student, and my first exposure to MS is really in grad school. I’ve heard about the condition, and I’ve met someone who told me she was diagnosed with MS. However, the impact and the affects of living with MS doesn’t hit home unless it hits in some personal way. And you know, a part of being a clinician who can make a difference in peoples’ lives is having the ability to empathize. Hence, I really appreciate your candidness about living with MS because you are providing me with such incredible insight to your experience that I wouldn’t otherwise be exposed to w/in the classroom. So thank you, again.

    I was going through your blogs, and what caught my attention was this one b/c I love to exercise. I know that sounds weird, but I’ll tell you why. I was diagnosed w/ this rare form of cancer in my blood capillaries. And one of the things that got me going was exercise. I spent a long time trying to figure out why. Why did I have this urge to keep pushing myself? Why was I controlling what I was eating? I think the key word for me was control. I needed some type of control when I felt as though everything else was out of control (my diagnosis). And when I felt like I was in limbo, I realized that having that sense of control mattered so much to me. And thus, it relieved me of some of my stressors. And you know what? It made me feel better, and it made me feel like I was getting rid of the cancer. That right there pushed me mentally so I could get through the rough days. I just wanted to add some of my personal experiences with the power of exercise and healthy eating. I hope you have found other activities (other than exercise) or methods to reduce stress. I heard meditation works wonders. I’ve tried it but I keep falling asleep. It’s probably b/c I am not doing it correctly.

    Last thing, I was checking out your videos on Youtube. I noticed last upload was last year. Are you planning on continuing to vlog? Please do!

    Anyways, I wanted to let you know that I am learning a lot from your blogs. Write on!

    Reply
    • May 16, 2015 at 8:44 pm
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      Empathy is a MUST-HAVE when getting into the medical field yet so many people get into it without having the skill known as empathy. It's like a pyromaniac becoming a fire fighter; it just makes things worse haha…

      Anyways, I WISH I was the kind of person who loved exercising. Some people are just like that and some are not. I think a lot of us with MS are not because of the fatigue. I understand the control thing though, but for me, I feel in control when I KNOW how something works which really pushed me to learn about neurology. I HATE not knowing how something works be it the plumbing of a toilette, a car, or a brain. KNOWING makes me feel more "in control" and I have ALWAYS been like that.

      I have not VLOGGED IN SO LONG. I hate STARTING something, that is the hardest part about projects or writing or anything! Just starting and since I have not done a video in so long I have to START over. I want to. I need to. I just have not found the motivation haha…

      Reply
  • May 15, 2015 at 6:16 pm
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    Hello Matt
    My name is Yasmin Martinez, I am an OT student at Loma Linda University.
    I was reading your blog “Was feeling better” You said, you have been waking up at 5:00 to exercise and have been doing changes to your daily diet. That is awesome you are able to motivate yourself to wake up at 5:00 and exercise. I keep thinking about waking up early and exercise before class. The fact is, I don’t regular do it because I am up studying long night every day. Excuses, excuses ….is what I am telling myself now after reading your blog.
    Keep up the good work of exercising and eating healthy. This will definitely help you by reducing stress in your everyday life. You are in the right track. No matter how other things come up in your life, you are still an active individual with your mind set in a goal.
    Keep calm and exercise!

    Reply
    • May 16, 2015 at 8:52 pm
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      lol thank you, ironically in the last few days, I have been depressed and so tired/dizzy so I have not been following this routine. I will try to start back up tomorrow maybe?

      Reply

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