Trying to Keep Moving but I Over Did It…

I am frustrated. The day before yesterday I was feeling pretty decent so I went for a walk and then did some very light exercises. I also wanted to see if Ritalin would magically start working so I took 20mg. I sat down for coffee, like any other day. After I finished I cleaned my mug, also like any other day. That turned into doing all the dishes which turned into cleaning off the counter tops which turned into me realizing we had no clean rags to work with so I did a load of laundry and then that turned into doing all the laundry in the laundry room and also cleaning and organizing the laundry room and probably more that I am not thinking of. It was too much. I don’t know if the Ritalin helped or if I just got myself going enough to not want to stop but… it was too much.

Yesterday I felt really tired and “dizzy”. My balance was off and my vision was so crappy so I pretty much lied around and watched TV all day. I did have a thought though; a lot of you with MS might have this, you look straight up and instantly feel dizzy, enough to fall. Well, I have had that for years but this vision thing I have had such a hard time explaining? It’s more like two separate issues. When I move my head left, right, up or down, too “quickly” (normally really) it feels exactly like that. My vision blurs and doubles a bit but I think it is as a result of the dizziness. Or maybe the dizziness is a result of the vision? A little of both? Either way it seems like I have both a vestibular and visual issue.

Well, today it is still really bad. I tried going out and working in the garden but I am having such a hard time staying upright and seeing what I am doing so… forget that. My legs still feel weak and I have also been noticing, I might have some minor foot drop in my left foot. I have almost tripped a few times and noticed I was tripping on my left toe. It has been years! Also, while I am walking, the flat of my foot tends to skim across the floor like I am just not raising it high enough. This sometimes causes my knee to lock. So I am not sure what is causing this… I do not feel like I am flaring up but at the same time I do not really feel like I have been inactive enough to cause all this? I don’t know… Although, as I am typing now I am noticing that I keep hitting multiple keys at once. What is wrong with my health? Why can’t I just be stable? I hate not knowing what state I will wake up in the next day… Will I feel well enough to start driving maybe or is it going to be one of those days where simply eating seems like too much of an endeavor?

SSI would help so much right now (as far as stress mostly) but they called the other day to clarify some information on my application and she asked why I am taking Zoloft. I said for depression and she asked if I felt like it was under control. I said yes but she kept asking more questions about it. I asked why she was asking and she said that she just wasn’t sure if the rest of my application would be enough to be approved. Really? I can’t see straight, I am crazy fatigued, I walk like a drunk and my cognition is crap and you are not sure if that is enough? But feeling a little depressed would do it huh? I swear, Multiple Sclerosis has to be the most misunderstood disease to the Social Security System… I wish I could make enough money from home to pay all my bills, live comfortably, make sure I am ahead on taxes and not be as stressed… but I can barely keep my head above water.


7 Responses to Trying to Keep Moving but I Over Did It…

  1. Ashley Lee says:

    Hi Matt,
    My name is Ashley and I am an Occupational Therapy student at Loma Linda. First of all, thank you for your honest and raw post. It is one thing to learn about MS in class and another to be able to get a glimpse of how it is like to live with MS. I can’t even begin to imagine how it must be like to experience such level of fatigue and the amount of frustration you have over your body.
    As a future therapist, I would like to know how I can provide comfort to patients who might be experiencing and dealing with similar things as you. At times like these, what gives you the most comfort and allows you to move forward?
    Thank you again for this personal post and shining a light on how it is like to live with MS. I hope you raise further awareness and educate others on this disease.
    Don’t lose hope! Take care

    • Ashley,
      Honestly? That is too “difficult” a question to answer because everyone is so different. For example, I like to know as much as I can about the disease, I like to see my MRIs, being able to see the lesions causing me this misery makes me feel in control but I know others who feel the opposite; don’t want to see them what so ever. But what your “best bet” probably is, is asking all your patients, and finding out what THEY specifically want. That personalises things and makes them feel like less of a number on a chart as most medical professionals do. If you make me feel like I am just patient 6 out of 8 for the day and you are just trying to get through you load I am probably just going to leave haha…

      • Ashley Lee says:

        Hey Matt,
        Thank you for your quick response! That’s actually one of the reasons why I chose to become an occupational therapist. I like that OTs get more quality time with clients and are very client-centered. I guess a better question for you then would be: have you ever had any encounters with therapists/doctors/nurses/etc. who really motivated you or made a lasting impression on you? If so, why???
        I apologize if I sound like I’m prying too much or if the question is too personal! I am curious about your perspective.
        I hope today is a better day for you.
        Thanks again for your response

        • Haha I just wish I had better answers but of all the therapists I have seen the ones I remember are the ones who formed more of a personal friendship with me instead of trying to act like I was beneath them in some way. We were just two people you know?

          • Ashley Lee says:

            Haha No worries, that was a great answer. I like how you emphasize the relational aspect rather than the treatment. Not saying quality of treatment isn’t important but the relationship between client and healthcare provider shouldn’t be neglected! Make the process a lot more humanizing.
            Makes perfect sense!
            Thanks for your response. I’m rooting for you!
            Take care

  2. Melissa Reynoso says:

    Hey Matt,

    My name is Melissa and I am also an OTS at Loma Linda University. I have been reading along with your blog for awhile and noticed the amount of frustration you deal with on a day to day basis. Everyday seems to affect you differently. How do you deal with such variance? Do you try to monopolize the days where you are feeling “decent” by doing activities like light exercise or gardening as opposed to days when you are feeling dizzy or weaker?
    I hope you are feeling better today. Best wishes and take care!

    • It’s probably the most difficult (mentally) thing to deal with; unpredictability. The most predictable part of MS is its unpredictability. I rest when I feel I need it and I’m active when I feel I can be but I am not sure that is “dealing” with it, it’s like not being “happy” with it but instead just learning to be content… can’t change is so yeah… I don’t know haha that is a really tough one…

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