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My New Life-Long Goal is to be Boring

“What did you do over the weekend?” someone would ask me. In the past, I remember answering that question by saying that I saw a new movie, went out for lunch, hung out with some friends, went on a hike and/or probably a bunch of other outgoing stuff which, at the time, seemed relatively mundane to me because that’s just what I did on a regular basis. I was so active, and I was always moving! Now, thanks to Multiple Sclerosis (MS), just the idea of doing any of that stuff seems utterly exhausting so I have very little (if any) interest in it.

I never wanted life to be boring

But I could literally just sit here and list examples of all the things that I used to do on a weekly basis that used to just be part of my typical routine because I always wanted to be doing something; I always wanted to have stuff to talk about. I didn’t want to be that boring guy who never did anything but sit around the house and watch TV, especially because I used to find that so boring! I was so go-go-go! I wanted to be the guy who was always out being social or going on some epic outdoor-adventure with friends. I just wanted to be active and always have something new to tell people about. I wanted my life to be exciting and I wanted it to be interesting; I did not want it to be boring.

After MS entered the picture

Well, I guess I technically got what I asked for. After I was diagnosed with MS, my life definitely became “exciting” – just not in the way I wanted. I also always had something new to tell people about, just not the kind of stuff people usually (I imagine) enjoy listening to. I guess I should have been more specific when asking life for something to keep me busy. Telling people how I spent my week in the hospital getting an infusion of Solu-Medrol is not exactly the kind of thing you feel proud to brag about, though I guess being able to pronounce (and define) “dysdiadochokinesia” (ooh, and surprisingly spell, go me?) is kind of cool because I just sound ever so smart. In your early 20s, telling all your friends that you were in the hospital because you crashed your motorcycle in some super crazy, adrenaline-fueled, off-roading race that left you with a totally gnarly scar might have seemed kind of cool, but frankly, telling people you were in the hospital again because of an illness is… not.

Worn out by the “excitement” of MS

But I’m not like that anymore, by which I mean, constantly craving something to do. For the last 4 years or so, I have just been so worn out by the amount of “excitement” MS has brought into my daily life that sometimes it feels like all I do is dream about being able to do nothing; just go to bed early, sleep in so that I can finish that really weird dream without my alarm ripping me out of it, lie around the house, watch some Netflix, and eat only when I feel hungry (not when my alarm tells me I need to eat). I can hardly imagine a day where I am not constantly made aware of the time due to my many alarms telling me it’s time to wake up, time to take pills, time to eat, time to go to a doctor’s appointment, time to do labs, time to stretch, time to something-something-something. It’s always something and never something I want to do.

Stressed out about how I am feeling

And if I am not stressed out about my daily schedule I am probably stressed out about how I am feeling. Insomnia, fatigue, weird tremors, sound sensitivity, the occasional neuropathic pain that feels like a bolt of lightning just stabbed me on the side of my face, you know, normal stuff. It’s always something, and I am tired of it. I am tired of dealing with it and I am tired of talking about it. Maybe people found some of the weird neurological stuff that I was experiencing kind of interesting at first, but I am sure it got really old really quick because it seems like that is all I ever have to talk about when someone asks me about my week.

Being healthy enough to be boring

My new life-long goal is to be healthy enough to be boring. I just want that option on the table, you know? I don’t really care if people think I am exciting anymore, I just want to feel like I don’t always have something health-related to worry and stress about even if that means I am utterly boring. Is that asking for too much?

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Comments

  • LaurieB
    11 months ago

    I, too, look back at how busy my life was before MS. I was involved with my kids and all their interests. My husband was an active duty Marine. He took his company of Marines to Desert Storm and was gone for eight months. During that time, I was the contact person for all the families and the single lieutenants families. They were over eighty plus families that depended on me to get them through that horrible time. I must have done a good job because I had Marines hugging me when they got back. It was my husbands last deployment. He had to be away in the United States but my MS had not come out yet. I was able to travel and see him. After my MS came out, I had numerous people help me. I used to jokingly call a few Marines my bird dogs because they would make a path to get my wheelchair between tables at dinners. They were always looking out for me. A few years later, we were at public ceremony and I had a marines parents give me a large bunch of red and yellow long stemmed roses for being there for their son during a difficult time. I can look back and say my life was not boring and I’m trying to make it not boring now. I have been hospitalized a few times but I try to go through each time with a positive attitude. I do use Tegretol for the extreme jaw pain.

  • quillmama
    11 months ago

    My theme song recently has been Chumbawumba’s Fade Away:
    Some set their hearts on a rocking chair
    The better to sleep out their days
    But I’m looking for a reason to kick and scream
    I don’t wanna fade away

  • lightweaver
    11 months ago

    I am boring now. I am home bound and I bore me, but I remember exciting times. I wish I felt that well again.

  • Carol
    11 months ago

    lightweaver,

    I am also, like you, homebound and bored. But, I too remember the exciting times I had earlier and wish that I were well again to experience it all over.

  • dxrfk3
    11 months ago

    Matt, have you ever had a diagnosis of trigeminal neuralgia? The sharp shocks in your face are classic signs of TN. I have MS (diagnosed 1997) and was diagnosed with TN a few years ago. I sincerely hope that’s not what you’re experiencing. This disease is a thief.

  • RobWelsh
    11 months ago

    I’m finding it hard to hear nonsense with shiz running down my leg. In a restaurant. At least it’s not both legs 🙂 Lesson being, clean up before it dries. Yes, better walking would get me to a toilet sooner. Thanks. Tricky MS comes complete with incontinence and ataxia :-/

  • Carol
    11 months ago

    lightweaver,

    I am also, like you, homebound and bored. But, I too remember the exciting times I had earlier and wish that I were well again to experience it all over.

  • Carol
    11 months ago

    RobWelsh,

    Yes, unfortunately, MS does come complete with incontinence and lots of diarrhea. I never go out besides doctor appointments, but when I do, I always wear my Depends.

  • lovmar
    11 months ago

    I also find that I am so numb that by the time I actually can feel that I need to go to the bathroom it is too late.

  • ladyjeff00
    11 months ago

    This is one of the bestesaaya I’ve read in 19 years. I was that person, and I love that I do accept boring. Have a shirt that says,”sorry I’m late…I just didn’t want to come.” In almost two decades with this fickle mistress, losing friends, gaining allies. It all comes down to this, do you, the people who mind don’t matter and the people who matter never mind. Sending good vibes to this fraternity I did not choose to pledge

  • Matt Allen G author
    10 months ago

    I have seen that shirt, I NEED that shirt haha.

  • Doobek
    11 months ago

    Hi Matt and to everyone else! I can relate to just about everything others say in their comments. I’ve had MS for 28 years. Was diagnosed at age 23 while in nursing school. I have spasticity/stiffness on a daily basis. Taking 2 skeletal muscle relaxers for over 15 yrs. Considering having Baclofen pump put in. My doctor is pushing me that way. The medical marijuana sounds interesting. Need to learn more about it. Was married for 21 yrs before spouse made decision to bail out. Increasing disability got to be too much for him. MS has definitely brought many losses into my life! I

  • Azjackie
    11 months ago

    This sounds like me it’s scary. A couple years ago I wrote I wanted to go back to being “boring”.

    I think we all thought our pre-MS life was boring. I don’t think we realized it wasn’t. For me day off work, irregardless the temperature, hop in the car drive 2 hours to a mall walking all day just looking.

    Now a struggle to move or crawl to the refrigerator 7 feet away to get a cold bottle of water. Then sometimes just sitting on the floor to drink it.

    We must’nt think of what used to be or could’ve been. It physically hurts us. Talk to someone or if you’re like me sometimes myself. Get it out then immediately look at something anything you can appreciate (flower, sky, pet, child, book…)

  • Matt Allen G author
    10 months ago

    Looking back my life was ANYTHING BUT boring but now there is just always SOMETHING going on with my MS, I am so tired of it! If it came down to living this “exciting” MS life or a BORING life? I would take “boring” in a heartbeat!

  • Cletus
    11 months ago

    Yes I know all so well where you are at and the feeling is definitely mutual. I raised a family of 3 daughters and worked at a job I loved, but looking back I probably worked too much LOL. Anyways my MS was diagnosed later on (Feb 2004) at the age of 53. I will tell you the truth though That was not the way that I had imagined my “Golden” years but what are you to do. I still do struggle with depression on and off but there has been so much more than the MS that has affected that. The one thing that keeps me sane I guess is that woulda. coulda, and shoulda will not get you anywhere and that is where I try not to go very often. Always something to talk about just not what you might expect……..

  • Heitz
    11 months ago

    Oh Matt, I wish that when someone says something that I am feeling it made me feel better.
    I just get pissed off for the both of us!!!
    I too was a Go Go person, I still am inside where it doesn’t really count.
    People who have known me in my past life have all these expectations of me. Even my closest family.
    I live in a world somewhere between despair and delusion. Delusion related to how I feel about my MS. Like having a broken bone and waiting for it to heal. It ain’t. Anyway, I am going to watch for you and see if you come up with some other ways to cope. Reading your article made me remember I hadn’t taken my pills today. I think I get how you feel about Alarms but not a bad way to help yourself. I do any and all things to “forget” I have MS. I took the knee at a community band doing the national anthem at the band in the park thing, 2 days later I was knocked completely off my feet in the dog park.
    Did not jump up as if nothing had happened. Today I went back there and then I took my dog swimming in a Swim at Your Own Risk place.
    Sounds like I get around. No. When I get there I have to stop and be there for a while to recover.
    Wow, I just wanted to say I appreciate your writings and it appears I really need someone to talk to as well. Also wanted to let you know I might be old enough to be your mother. Just so your perspective is not entirely skewed. take care

  • ml39479
    11 months ago

    I had to chuckle a little Matt when I read your piece…before MS….any annual check up to the doc my reply to all the “have you had any of the following symptoms” or “do you take any medications” questions – I’d always laugh and say “noooo….I’m actually a pretty boring patient”. Well…heck if I didn’t go from one extreme to the other! I totally get where you’re coming from now too in that regard. Boring anyone!?

  • Matt Allen G author
    10 months ago

    Haha that is EXACTLY what I am talking about! I can’t remember NOT having a laundry list of “complaints” to share with my doctor’s office!

  • Jdenkinger
    11 months ago

    I feel ultra lucky that I only get on average 1 major flare up once every 4 years or so. Granted they are bad bad flares, the last one landed me in the hospital for 2 weeks and I had to go to physical therapy to learn to walk again, but otherwise… I am proud of my boring life. But it’s not boring to me. I work 4 10 hour days at work, go to the gym, go home. Eat dinner, go to bed, do it all over. But I have my wife to make my life interesting and a possible baby on the way so my life is about to get much less boring. Either way, stay strong my man! Life is what you make it. Dont let MS define you.

  • rayche
    11 months ago

    Abso-rude-word-lutely! So,what keeps us going? By surrounding ouselves with mantras (in different forms),(because the memory is going off somewhere) that remind us – this is YOUR life, do what feels right for YOU and stop trying to live up to someone elses ideals, cos it doesnt work for me anymore. Oh, and try to laugh at least three times a day. Thanks Matt, you were my daily medicineq today!

  • RobWelsh
    11 months ago

    Is that asking for too much?
    Yes, probably. This universe does not give get-out-free passes. I want to be on the offense against the hell of ignorance (lofty, I know).

  • Sycoraxepp
    11 months ago

    When you mentioned all you use to do, I started making my own mental list of the ‘use to’ stuff. I found that it exhausted me to think about it all. I don’t mind being boring. My priorities are so very different now.

  • Harleydog1
    11 months ago

    I fall out of bed you are not alone

  • CCTWB
    11 months ago

    Man, I really am sorry your battling this disease my cousin calls a thief. My heart really goes out to you. Your writing was very interesting and makes me realize how lucky I am. God Bless you and never give up the fight.

  • Matt Allen G author
    11 months ago

    No matter what battle we are in, there is always someone who has it worse so it’s important to look at what you do have and not just what you DON’T have so that hopefully you won’t take what you still have for granted. I try that everyday,

  • Carol
    11 months ago

    Matt Allen G,

    I have to remind myself everyday that there are people out there who have it worse. I get so depressed and lonely every day, but I have to keep remind myself that it could be worse.

  • JimmyMac
    11 months ago

    Matt, you definitely captured what it feels like to be trapped in your own body but , to me, you missed the greatest part of MS. The ever present get out of jail free card. Yeah, sometimes you’d rather lay around but now you can explain it away just by saying, “this damn MS”. Sure I miss making questionable desions like running a river with no helmet and falling in the river but I survived. Now I can just blame MS. Awesome. Even the most knowledgeable neuro could ever explain MS so I say don’t look the gift horse in the mouth. Look I’d rather be making river running decisions but can’t anymore. Once you get over that you might as well take advantage where you can.

  • RenniesMommy
    11 months ago

    OK, I may have misread your comment, but the tone I am reading strikes a nerve in me (no pun intended) as my greatest fear is that I think everyone thinks I use my MS as a “get out of jail free” card. Stop! My family all roll their eyes when I say I can’t do something, so MANY TIMES I push myself to do things that only cost me more later.

    Here’s my life’s priority right now: to keep my job. If I lose my job, there goes the house, food for my kids and bye bye fantastic insurance plan. I would love to go have outdoor (or even indoor) adventures with my kids, and sometimes I do, but I’m completely wiped the next day.

    I am 43 years old and have had the RRMS diagnosis for 6 years. I just had my 3rd major relapse in March where I lost partial vision in my right eye (which may be permanent as it still hasn’t come back) and my vision in my left eye is still diminished due to my first bout of Optic Neuritis in 2012. Since the March relapse, I can barely take a shower without completely wiping myself out (so I do it at night, then go to bed!) and the summer heat is kicking my butt. But on the surface, no one knows this because I always look very put together and stylish (which I feel I must do to please the people at work). And thus the eye-rolls when I duck out of plans.

    So yeah, sometimes I pull the “greatest gift” of the MS card. If I tell you I can’t do something, trust me, it’s killing me, but I really can’t do it. SMH

  • Carol
    11 months ago

    RenniesMommy,

    I am sorry to read of your relapses and how you are still able to go to work. I spent decades not knowing what was wrong with me, but I didn’t look normal or able to walk normal. What betrayed me was my mind. I had the worse trouble at work because of it and was laid off. I am 68 and still remember all my times at work and the people and wish like hell I could work again.

  • ggsmslife
    11 months ago

    Renniesmommy
    OMG….this is me! I thought when I was diagnosed in 2003 that as long as I “looked” normal my family (husband and children) would not think about my illness. It used to worry them when I looked sick so I thought I was doing the right thing.
    Well, I dont know if I did more damage at this point because I have found that if you dont “look” sick then you should be able to do anything like you used to. When you say you cant they do not understand. So I push…PUSH PUSH PUSH to be normal, to fit in, and do things with them for as long as I can. Then, Im down for 3 days to a week….

  • Matt Allen G author
    11 months ago

    I honestly don’y feel like I get to use that card that often. There are some situations where I can but in my case, I can’t just lie around guilt/ stress-free because life doesn’t pause when I need a break. Every minute I am not pushing myself I am losing money and will probably also pay for it in some other way but the overall point is, I would rather not even have to have a get out of free card, I would rather not have an arsenal of excuses at my disposal, sometimes I would rather be so ordinary that it’s boring

  • ARTISMAE129
    11 months ago

    Matt, I think you are the first person I’ve found who knew & experienced that sound sensitivity crap!!!!! Its terrible, isn’t it? I couldn’t explain to my hubby what it felt like but to say it felt like when you hit your elbow. My symptom would spike when I spoke any words with D’s, F’s, or T’s. Certain commercials would trigger it or even the way my feet would touch the floor while I was walking. I had this feeling for a little over a month. I can’t recall what the medicine was my Neuro gave me, but it made it worse, so I stopped taking it after three days.

  • wandaholt
    11 months ago

    I too am struggling with this bizarre sound symptom. I have had it about 5 months and getting worse. Being still and quiet and cool seems to help but that makes it very confining, as if pain and weakness wasn’t enough to keep you still. I describe it as a swarm of bees without the sting getting set off by a host of triggers. I have to laugh at some of the things which start it. Here’s hoping it gets better.

  • Sycoraxepp
    11 months ago

    I also have sound sensitivity but I didn’t know what it was until now. I use to be musician now I can’t listen to any music. Some female voices also and other random noises. Music has been the hardest. I prefer mostly silence, haven’t watched TV in ages. When watching movie on computer I keep finger on volume.

  • Matt Allen G author
    11 months ago

    for me, it is usually triggered by sudden sharp sounds. It makes all my muscles contract causing me to basically jump and fling whatever I am holding into the air. At first, I was prescribed Klonopin and it definitely helped but it made me SO TIRED!

  • wandaholt
    11 months ago

    Thank you for your description of your symptoms and struggles. Seeing it in print helps me to feel better for my m.s. experience is very similar.

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