My Thoughts: When MS Gets the Best of Me

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Since the beginning of my blog I have been told nothing but good things about my attitude as I do my best to maintain a positive one. I have mentioned just a couple times before that this is not always the case but regardless, I do my best to keep my content positive. However, I would be lying if I said that MS never got to me. That’s an inevitable factor of dealing with such a disease, every once in a while, it will get the best of us. I believe that I do in fact deal with my disease pretty well for the most part when it comes to my mental and emotional well being but last night for example, I did have a bit of a breakdown. I think it’s necessary for me to share this because like everything else I share about my MS experience, it’s just part of the truth and I can’t hide any of that from anyone. It’s important for people to see the contrast that can exist within me otherwise my usual positive attitude really means nothing as I could just be manically optimistic about my life which is definitely not the case: Anyone who personally knows me could vouch for that, it may be hard for my regular readers to believe, but most my friends would consider me to be a pessimist, someone who only sees the bad in life, in society, in people. I agree that I can often be pessimistic but I try my best to maintain a balance of reason, logic, and emotion when it comes to my judgment of the world and the people around me and so I believe it is important to be able to express both optimism and pessimism when necessary. Anyways, to hide part of the truth would be nothing short of manipulating the reality of dealing with Multiple Sclerosis which is what most people really are interested in. The reality of MS.

So the reality: The Dark Side. Logically I know I have to deal with a lot more then the average 20/21 year old male, I know it takes a lot of strength to get through what we MS patients have to deal with but that doesn’t change the fact that every once in a while I emotionally feel quite pathetic. It’s only natural that I want to be able to keep up with people my age, to be able to do the things a 21 year old male should be able to do, but the stark reality of my life is that that may not always be possible and so emotionally, I catch myself feeling like less of a man for not being able to do the things that society has taught us makes men men. I grow extremely frustrated with myself when I fall into this dark mood, the perception of my handicap is negatively amplified. My attitude dramatically shifts into the dark when I have trouble buttoning my shirt, walking in a straight line, thinking clearly, etc. Things that normally merely bug me but don’t destroy me. I am a very stubborn and prideful individual and nothing destroys me more then having to mutter the words “I can’t” as a result of something I can’t personally control because deep down inside, I think I want to have full control, at least over something as simple as my own body. Who doesn’t want that? But to want full control over something that is uncontrollable by nature is simply unrealistic. But to have to tell someone I can’t hang out because it’s 8pm and I have no energy just drives me mad! I want to force myself to keep up with everyone but I understand logically that I have to recognize my limits in order to prevent things from getting worse. It’s things like this that just make me feel pathetic, things like this that sometimes make me want to just fester in a world of depression. I do my best to destroy these thoughts immediately as I consider those thoughts to be a result of MS winning, taking the lead, and I’m far too stubborn to let that happen.
Something a lot of people with MS talk about I have noticed is how no one really, truly, understands what people with Multiple Sclerosis have to go through, have to deal with deep down inside. This is definitely something I have felt many, many, times. No matter how much support you receive from family and friends the fact of the matter is that they don’t, they CAN’T fully understand what we are going through in our minds and in our hearts. It’s nothing personal, it doesn’t mean we don’t appreciate those efforts of support any less or that they don’t help it’s just simple common sense: You can’t explain the concept of color to the blind, the concept of sound to the deaf, you might be able to get pretty close to the truth using words alone but you can never fully translate the actual feelings themselves. This creates a large gap in communication between those with MS and their loved ones because sometimes it’s hard for them to fully comprehend why we feel the way we feel, act the way we act, think the way we think, and need the time alone that we sometimes may need. It’s not that our loved ones are doing something wrong or not doing something right, it’s just that sometimes some of us have to deal with things differently to get through our rough patches because it’s not always possible to properly communicate what we are going through. Everyone is different when it comes to dealing with complicated thoughts and emotions and for me I sometimes just need time to let my thought clear and rationalize. We can only deal with our problems the best way we know how to which is why it’s important for our loved ones to understand that it’s nothing personal, it may be hard to understand, to accept, but it’s like I said, you can’t explain that the sky is blue to someone who doesn’t understand the concept of color. The key to getting through these bumps in the road is open communication, you may not fully be able to explain what your feeling, but as long as you try your best, that’s half the battle.

8 Responses to My Thoughts: When MS Gets the Best of Me

  1. MKAD says:

    up down up down… at least I know pretty sure that you'll be UP next time

  2. Ben says:

    You're back on solu-medrol and then prednisone again right? I remember when I was going through the same treatment around the time I was diagnosed with RRMS, there was a night where I basically lost my mind for whatever reason and my thoughts were running through my head at what seemed like 80mph at least. I had to take a step back from what I was doing and do something simple and mind-numbing like watching a movie or tv show just to regain control of myself.

    Now I will be honest, I've been reading your blog posts for a little while now (I won't go into how I found it because I've never been one to read or write these things), but some of the issues you've been talking about in the past in my honest opinion could just as easily be pointed to the steroids or other things as it could be pointed to the MS.

    "My attitude dramatically shifts into the dark when I have trouble buttoning my shirt, walking in a straight line, thinking clearly, etc."

    I would honestly think that things like that would be just like when you're holding your hand out in front of you and find you can't keep it steady. Sounds to me more like how you'd feel on steroids.

    For me personally, with the MS I also have vitamin B-12 deficiency, which some of the symptoms of that are very similar to symptoms with MS, so whenever I feel something that -could- be a possible symptom, I will usually have to do some research and decide whether or not it could be a symptom of MS, B-12 deficiency, or other trivial things such as not enough rest or just plain stress, especially when it comes to cognitive issues.

    I just think that it's very easy to point the finger at MS when in fact it could just as easily be other things that get amplified because you have MS. I could go into detail with personal examples, but I've already written a lot here so I'll leave it at that.

    anyway, you know how you're feeling better than anyone reading this. I just tried to give you and whoever else this can apply to another way to look at it to hopefully help out a little. Hopefully everything works out for you.

  3. Willowtree says:

    I'd like to give you a totally emotional response with no analyzing at all.

    *hugs*

    Ok, that said, I believe many MS patients or anyone who deals with a chronic illness can identify with what you've written. Earlier, I read a poster someone had on their blog about the 10 reasons why having MS was great or something similar. I felt SO poorly after reading it, because it wasnt written in a funny way, but in an almost spiteful way. It reminded me of how much different my life is now, and what is no longer within my grasp and Im older than you are, so,I am certain it is that much more difficult for you sometimes as a young person dealing with this. Please just know, you can't/should'nt/arent expected to be just peachy forever. Just take it one day at a time. One hour at a time if you must, never give up though.
    Hopefully this phase will move through soon. *hugs*

  4. Matt Allen G says:

    @ Ben

    For me to blame everything I have to deal with on the MS alone would be nothing short of ignorant. I know a lot of my medications have a lot to do with the daily stress and issues I have to deal with especially the steroids. For the sake of this blog however and easy reading, I tend to not get into the details every time I mention what I'm going through.

    The Solu-Medrol causes severe irritability for me, I'm talking full on Roid-Rage but sometimes the way I look at it is, if I didn't have MS I wouldn’t have to be doing these treatments, and I wouldn’t be going through what I'm going through, so MS is indirectly still at fault but I do my best to differentiate between the two so that I can avoid every unnecessary issue I can avoid which is why there are so many medications I have just refused to take because I know they will or have caused more bad then they cause good.

    I appreciate your logical approach, as I said above, in order to make proper judgements in life I believe you must find a balance of logic and emotion. I do my best to analyze everything in this manor, for example, you mentioned my difficulty buttoning my shirt and things like that. I know for a fact that that is a direct issue of my MS not a side effect because it was one of the first things to start happening to me BEFORE I was on ANY medication. It comes and it goes just like some people (including myself) deal with walking issues, memory loss, etc, etc. But again, I always do my best to investigate wether or not an issue is a direct result of MS or indirect result because people can be so quick to assume EVERYTHING is a result of MS after being diagnosed when in fact, maybe it's just a result of the common cold or some other unrelated issue.

    @ Willowtree

    I appreciate the EMOTIONAL response, thanks! Sometimes thats all people need even when you typically only look at the world through logical eyes. It's just human nature I suppose. But nonetheless, it's just a phase, part of being human, and I will of course move on through it, pretty quickly I'm sure. I always take things one day at a time, and when necessary, one hour at a time just as you said.

    THANKS AGAIN!

  5. Ben says:

    "I do my best to differentiate between the two so that I can avoid every unnecessary issue I can avoid which is why there are so many medications I have just refused to take because I know they will or have caused more bad then they cause good."

    I couldn't agree with you more here. You have bigger fish to fry and MS just gets in the way and sets you back in just about every way imaginable. Since it's so unpredictable, once you figure out how to get over or control one symptom or hurdle, another completely unrelated hurdle (or what seems unrelated at the time) gets thrown in your way. Like everyone in this position, their biggest priority probably is taking back control of their own lives.

  6. Matt Allen G says:

    "their biggest priority probably is taking back control of their own lives. "
    That's all I want, as much control as I can get given my circumstances.

  7. megan k says:

    Found your blog after googling 'After IV steroids should I feel tired.' 🙂 I had my first round of three that ended Friday. Now today, Sunday, I feel like not a nice person! Ugh The second day of treatment I felt like my pre MS self, happy, full of energy, ready to do anything….Now today, I feel like I'm going insane. I guess this is normal. :/ Great blog.
    http://www.meganknox.net

  8. Matt Allen G says:

    It's normal for SOME* people. With me my first IV treatment didn't really negatively effect me. My second IV treatment I noticed a slight increase in irritability and hardly and positive effects. My third treatment I had extreme irritability/roid rage and NO positive effects at all. Mind that's 3 treatments in less then 7 months plus I was on prednisone the ENTIRE time… SO I was way pumped up on steroids… Hopefully you feel better soon and thanks for the compliment!

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