How MS Can Cause More Than Symptoms in a Person’s Life

OK, I think it is time for some honesty. For the last two and a half years or so my life with Multiple Sclerosis has taken an interesting turn. I don’t just mean medically, I mean in every aspect of my life because MS affects, well, everything. It’s been overwhelming, more so than usual I mean. My social life has seemingly collapsed and like many others with MS, my financial life is a burning pile of disappointment. The bills just keep coming and they pile up faster than I can make money. I have so many medical collection notices that I don’t bother checking the mail anymore. 9/10 times all I will get is a notice that someone wants money from me. Even worse, my MS has, from the very beginning, slowly chipped away at my independence. Sometimes I can’t help but feel like I can’t do anything for myself anymore! But that is not necessarily true, I have been way worse off in the past and I have seen so many people in much worse positions than I but, that being said, I can still do a lot less than I could before. So all of this has been hard on me mentally and emotionally which I think is partially why I have been so inactive here on my blog and in the MS community (I know many will disagree). Lately blogging about my life with MS seems to remind me of all these things and I think I have been avoiding it to avoid dealing with the reality of my situation.

Before I go on I should say this; my life is slowly getting back on track. My health seems to be more under “control”, even improving, and after spending days/weeks just intensely thinking about my life like a game of chess I am finally starting to see a viable path to where I want to be but as it is with most things, it will just take time. Time, the thing that can seem like forever but also seem like it just flies by. Now this is just a small first step in changing my situation (building a game plan) but I am learning as I go. It’s just part of my process. Now I am going to talk a bit about everything I mentioned above because today is World MS Day and if you are on Twitter you are supposed to talk about your advice and tips for living life with MS using the hashtag #LifeWithms. So I wanted to highlight some of the ways MS can greatly impact someone other than just symptomatically which is what a lot of people seem to be focusing on today.

This is not exactly breaking news but MS can greatly affect your social life. It’s hard for people to understand a lot of the stuff MS can do to us (especially when so much of it is not visible) and how everyday can be different. Even I, as hard as I have always tried to articulate how MS affects me, often feel misunderstood by my own family. Sadly, this is more common than not but I do understand it. Friends are no different with the exception that they can just disappear on you. Fade away. A lot of people will say that MS shows you the true colors of the people around you and I could not agree more. Almost all the friendships I had maintained throughout my life have ended over the course of my “MS experience”. I (at this point in my life) honestly feel like no one who does not have MS can truly understand what it is like. They may be able to empathize really well but there are some things that are just impossible to translate into words. Sometimes it feels like trying to explain a new color that I can see but is not even on the spectrum of colors human beings can detect. How would you describe that in a way that they could truly see it in their mind? Well hold that thought because now I want to talk a bit about romantic relationships.

It disheartens me to see and hear about the problems people with MS try to deal with romantically and how they are made to feel because of it all. It’s kind of like I said with friends; a lot of people (in a romantic relationship) just cannot understand some of the things MS can cause in their significant other (who has MS). So often this leads to people splitting up over things that those of us with MS have zero control over. Now, I have noticed a few things about the relationships that do work out and have lasted. There tends to be a desire to truly understand the complexity of MS while acknowledging that sometimes the only thing they can understand is that they can’t. That doesn’t mean they just throw their arms up in the air and exclaim that they just don’t get it but instead that they can try to empathize the best they can but acknowledge that, “as much as I want to, as much as I am trying, I can’t even fathom what you are feeling but you just tell me what you need and I will do my best to help you however I can”. Then, every once in a while, I will see a couple where both people have MS and I often wonder how the dynamics of that works. I think of all the problems that could arise but then I think about how worth it those obstacles must be to have someone who understands you better than anyone else can because they have experienced a lot of the same things that you have. They understand the disease and how it affects you physically, mentally, and emotionally.

Now I was diagnosed at the age of 20 so my experiences with the many types of relationships in life (romantic and otherwise) are probably a little different than most people who were diagnosed at a later age but I really don’t think that changes a lot of what I just said as most the people I talk to about this stuff are 20, 30, 40 years older than I am. So here is my ultimate, personal point. The relationships with family and friends that I have had and once wanted, have changed. My idea of dating has changed. Personally, I have no desire to date but that does not change the fact that this is something I think about almost every day. How will I end up in a place that I feel I belong. Where I have true friends that get me and a romantic relationship that is more than just a façade. So this sort of split into two minorly different issues (regarding romantic relationships); how MS affects those who are already in a relationship and how it affects those who are not.

Alright, this will be a quick one despite how devastating it can be. This one should also not be a surprise but guess what? Being sick costs money. A lot of money. So many people are forced into bankruptcy (not just people with MS but other illnesses). As I said above, I have so many collection notices for medical bills that I can’t afford. Social Security totally screwed me over so they want everything they ever paid me back and in order to pay for certain necessities like medications I had to not pay other bills like credit cards. And then the late fees kept building up (despite me canceling all my cards) and now that debt is just too large for me to even try to start chipping away at. But this is nothing compared to others who have mortgages, car payments, families to care for, etc. But even still, to say it’s an uphill battle is incredibly optimistic because it is more like an uphill battle where the hill keeps getting steeper and someone keeps packing more and more weights on your back as you get closer to the top. But it seems to never end! The distance between you and the top of the hill just keeps stretching further and further as your body struggles to not buckle under the increasing weight of life. Well maybe that analogy was not as sweet, short, and simple but it’s probably more accurate. Financial stress is the worst because it is paired with a feeling of hopelessness, especially when you have a disease like MS because it’s hard not to think, “I have a chronic illness, this will never go away”.

Independence. Oh the ultimate irony of my life. Growing up I always strived to be as independent as I could. I wanted to know how to do everything on my own because I did not want to depend on anyone else. I was a DIY guy because why would I pay someone to do something I could learn to do myself? I was self-sufficient. By the age of 17 I had an “almost” full-time job, a truck, and a motorcycle/dirtbike. Freedom. And then MS. From what I have always been told, an aggressive case of MS. So it slowly started taking away my independence and every time I realized that I could not do something anymore I felt like a tiny part of me died because that was ME, I was the guy who could do it all but not anymore. I eventually had to start learning how to ask for help, something I was never any good at. Something that tore at my pride. Now I can’t even drive and I live in the desert so almost nothing is within walking distance. I have to rely on someone else to get me around everywhere and I hate it. I no longer even have much control over my own time because I am always on someone else schedule. This is something a lot of people struggle with, the loss of independence and yeah, it sucks but one thing I have learned is that with many things there are ways around it. Ever see an Occupational Therapist? That is basically their whole job, teaching you how to continue doing the things you love and need to do despite a new disability.

So really my point is this. Multiple Sclerosis can be a never-ending fight but MS really only has one card to beat you with; you giving up. And there might come a time where you think you just can’t do this, I have been there many times, but if you were to give up? If you stop fighting? MS wins and if you are like me there is no way in hell that is ever going to happen. I mentioned that I am finally starting to see a path to what I want in life and while there will surely be many unforeseeable bumps in the road and formidable obstacles in my way I can tell you this. I am stubborn so MS will not stand in my way, I’ll always overcome. I’ll always fight.

4 Responses to How MS Can Cause More Than Symptoms in a Person’s Life

  1. Rick Arnold says:

    Matt-
    I cannot find the words to express exactly how I feel/relate to what you wrote…

    So I’ll just thank you for sharing.

  2. Ben says:

    Hey Matt,

    As you’re already well aware, MS is a never ending fight no matter how hard or how easy it is on you at any given time. My experience in the 7 years since my diagnosis (Feb. 2010 at 20 years old) has been mild compared to what you or other people I’ve heard experience in less than 7 months. It hasn’t been easy, but I’ve been able to learn my limits for the most part. I’ve also learned what I can do/expect when I push or break those limits, which for me has helped on those not 100% days (whatever those are).

    However, doing that hasn’t stopped me from knowing that those limits could change at any time. I do what I can to help control or be prepared for it like exercising (I’ve recently been doing more dynamic exercises that should help build coordination along with strength,) and I’ve been trying to eat decent. In the end, I will still be forced to take the punches as they come and try to work with or around it. I will need to re-learn those new limits as they come.

    As far as any “goals” are concerned, they cross my mind regularly. I’ve been lucky and have been able to work full time to support myself. As for starting a family, or any other goals like that, I haven’t seriously entertained any of those. In my opinion, I don’t see it as anything worth pursuing or adding stress to myself over currently. With that said though, I won’t shoot it down either should the opportunity arise.

    MS is a constant fight. The best thing you can do is to make sure you get up at least one more time than it pulls you down.

  3. Nina says:

    You’re awesome! I’ve been dealing with weird neurological symptoms for almost 6 years now, and I don’t even dare go see a doctor again, because I think if they diagnose me with MS that’ll be my end. I only saw a neurologist 6 years ago and he dismissed MS but my symptoms never went away and each year I get new ones. My boyfriend left me just because I told him I had seen a neurologist in the past. So you’re right about the true color of people…
    Anyways, I see this strength in you and it makes me feel less scared. Go Matt!

  4. Michael Springer says:

    Recently I spent a week with 60 other PwMS. We all experienced a broad range of symptoms. Some of them were more common than others but one thing that began to emerge was the odd experience of looking back on the day, week or month and asking “…why did I say that…” or “…why did I do that?”

    For the two years before and two years after my diagnosis I had a series of minor auto crashes. Most of them were due a poor ability to judge distances (especially when backing up) or to inattentiveness. No one said anything to me about the increasing number of broken mirrors, bent bumpers or scrapes.

    It took me several years to understand `that my bumping into four to six vehicles or trees every other month was not normal. I should have given up my license but at the time I treated each incident as a normal event.

    For three years I stayed home alone and my wife went to work. I was lost in a haze and devoid of any motivation. Somehow I came to the conclusion that I had to eat. Without looking at the contents of the refrigerator or pantry I would make a list of things that I thought I needed to eat, drive to the store, fill a basket and pay for the groceries. After getting home I would sort through the items but could not remember why I had purchased certain items. Then I would pull the list out of my pocked and realize that I had not looked at it when I was in the store.

    It was not until I stopped crashing into things that I realized my driving at that period of time and my ability to drive safely was impaired. The dozen or so other PwMS had similar experiences with delayed insights into their behavior.

    Our symptoms are bizarre at times or go unnoticed by us and others. Three years after I was diagnosed I noticed that the world was made up of colors. Over the preceding two years I had lost most of my color vision but I did not notice until it came back over a three day period. We have no idea what symptoms are going to disrupt our intellectual and physical abilities. They invade our lives with no warning. Some fade away while others stay with us. If I am unaware why I felt or did something I cannot give others an explanation that will match their observations.

    Fortunately I am able to do more things than before but the confusion and inability to do what it takes to stay alive still threaten my survival. My wife helped me fill out the forms for SSDI. Not long after I received notice that I would be getting SSDI and Medicare my wife moved out and filed for divorce. She told my children that my behavior was due to drug use or an undiagnosed emotional problem. In the past 5 years I have had little to no contact with them.

    We do have the ADA but it only addresses access and reasonable accommodation. There are no laws that protect us from exploitation or our own inability to manage money. It is a hard trip but like Matt I am not giving up.

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