Progress Update: You Just Can’t Measure It


The one thing I CAN measure right now is the amount of time it’s been since I have last written a blog post. I have been majorly slacking in my writing… Been kind of busy and my mind has been elsewhere.

Anyways, what I am getting at is it seems to be nearly impossible to measure the progress I am making with my disease. One minute I think I am getting better, next minute I think I am getting worse, then all of a sudden I am feeling better again, then back to crap. It’s annoying… Furthermore, my symptoms “progress” are not all in sync. One day my balance will be great but my vision will be poor and the next day my balance will be horrible and my vision will be great. So how can I really say I am getting better or worse? I don’t know how to keep track of everything, I wish there was a way I could accurately convert my daily feelings and symptoms into numbers but I have not quite figured out how to  properly do that just yet.

So how have I been doing this week? For the most part pretty good. There have been a few moments where my vision got a little bad but for the most part all my symptoms have been pretty settle. Balance is not to bad, cognitive issues not too, too, bad, Lhermites sign has been absent for most the week except at night when I am getting really tired but even then I can barely feel it in my left hand. Fine motor control is still not 100% but it’s not that bad either: My fingers move a little slower, it’s hard to do things like keep a cup of water steady while holding it in my left hand, and my coordination is off. My sensativity to the cold has been pretty bad though…

While it seems like most my symptoms are slowly getting better there have been a few little things here and there that have popped up but I guess I do have to remember that I have been on steroids for 7 months and during the last 7 months I have also had THREE Solu-Medrol IV treatments. Now I am almost tapered off my oral steroids and so my body is not getting the extras kick it has probably grown dependent on. I am noticing my fatigue slowly crawling it’s way back into the picture… It’s hard to deal with fatigue when I need to be productive more then ever right now.

I think ultimately right now is going to be a time for strength and endurance to play a major roll in my life. I have to struggle to get the things I want: I need a job, I need a car, I need lots of things, and so, I need to push through the tough stuff and not let this MS get in the way of my progress, my success for they are two things that simply will not just land in my lap. Everyone has hardships in life to overcome but when there is an entire country on the other side of the world submerged in water and nuclear radiation I don’t think I have any room to complain. When there is a country who’s own leader is attacking innocent civilians in attempts to maintain control over their freedom I don’t think that I have any room to complain. Someone else always has it worse then you do so it’s important to focus on the positive things in one’s life no matter how small they are because somewhere out there in the world there is someone who would kill to have just a tiny taste of what you have, of what you have grown to take for granted. I have so much opportunity and so much potential, I need to learn to appreciate that more and make something of myself.


9 Responses to Progress Update: You Just Can’t Measure It

  1. Draven7 says:

    I'll tell you what someone told me constantly for months until I stopped refusing his advice: Try LDN. You have nothing to lose. Shanti

  2. Matt Allen G says:

    I am still in the process of getting new doctors and seeing a specialist but I am going to definitely bring it up :^b

  3. you have to be careful to be kind to yourself too Matt. I can see where your motivation for the things you need comes from, but making slow progress is still an OK way to go. Being too tough on yourself might lead to you crashing and burning and I like you way too much to want that to happen to you!

  4. Draven7 says:

    For me, it was a big change in a few days, Matt. I hope you have great results too. I needed a cane and cooling vest before LDN. Within days, I never needed those things again. I could run if I want. That was 3 years ago. Shanti

  5. Soph says:

    Oh man, I know what you mean. Doctors always ask me "which leg is worse these days" (my relapse in August affected my left side, the one in November my right side) and I say "well, it differs from day to day actually"…and then they just stare at me as if that was so strange. D: But we have to keep on living our lives, don't we? :/ (Don't overdo it though!)

    I've been watching the news three times a day lately; this string of disasters is really terrifying. You're right – we're still lucky in a way.

  6. Matt Allen G says:

    Yeah I am TRYING not to be to hard on myself, I have to catch it when I am because that's just my personality, I am a borderline perfectionist when it comes to certain things. I have much pride, I don't like to feel weak, I always want to be on top but I know I need to slowly let that go to some* degree.

    Hopefully in the next few months I can get things worked out well enough to put myself at ease. I have a few new things to try and research and we will see where that takes me. Mostly interested ins seeing that specialist at Loma Linda so when I tell him "Well it's different from day to day" he will know what I mean rather then stare at me like "you must be lying".

  7. Soph says:

    Haha, "you must be lying" is a good translation of the kind of look they give you, yes.

    Btw, since we talked the way you always have to take care of yourself recently – today I was at the neurological hospital and told the doctor about some eye trouble I've been having (phosphenes in one eye)and he said "well, if you don't have any other symptoms, we have no way of finding out whether this is MS-related or not". That totally threw me, and I carefully asked about a VEP test because honestly, that's how you tell what your visual nerves are up to, right? My doc looked completely dumbfounded. Then he said "yes, a VEP, we could do that" and ushered me off to electrophysiology. Honestly, how useless are these people? /end of rant

  8. Matt Allen G says:

    I can't tell you how many times I have suggested something to my doctor at the end of a conversation only to hear her say "yes, we should probably do that" "Yes we should probably try that" "Yes, that's a good amount" "Yes, Ill go ahead and order you some".

    They are totally useless when it comes to anything but the common cold or flu. Why did they get into this profession?? I can only assume it was strictly financial for a huge percentage of these doctors….

  9. Soph says:

    At least around here, I think reputation is also important – "a doctor", that's just such a *respectable* job. It doesn't even matter if you're a good doctor or not. XD

    Also, I am afraid that at least some of my doctors (neurologists especially) are actually wannabe scientists. Sure they care – about MS, not about the patient. There's a picture I took in my current doc's office that I like to show people – he keeps a folder labeled "interesting diseases". Maybe MS is in there, but my problems aren't. :S

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