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I am Not a Flake! Multiple Sclerosis is So Unpredictable!

I am Not a Flake! Multiple Sclerosis is So Unpredictable!

There are a lot of different symptoms that can affect people with multiple sclerosis (MS) and I have experienced so many of them over the years but one of the worst things about MS (if you ask me) is how unpredictable it is. I am not saying that it is actually worse than any given MS symptom I am just saying “super fatiguemight not be as bad if I knew when it was going to hit rather than it randomly blindsiding me when I am supposed to go on a trip or something! Maybe it is just me? I sort of have that personality where I like to know what’s coming, I don’t entirely enjoy surprises… I like to be prepared.

Procrastination doesn’t fit with MS

I can’t tell you how many times I have put things off till “tomorrow” (because lucky me, I have all the time in the world) and then I wake up feeling like garbage! At this point, I just want to lie in bed and that thing I needed to get done? Yeah, there is just no way, so, tomorrow… but anyone who has ever been a kid at some point in their life knows that “tomorrow never comes”. I think MS is just not the “right disease” for a procrastinator like me. I know that if something comes up and I am feeling well at that time, I should just do it right then and there but those days are not so common for me anymore so it’s hard to say “You know what? I don’t want to sit down, enjoy a coffee and watch the Daily Show, no, I want to scrub the bathtub!” but it sure is easy to say “I’ll deal with it tomorrow”.

Making plans is challenging

But that is clearly more of a “personal issue” that not everyone may deal with. What I know is hard for everyone is making plans. The unpredictable nature of multiple sclerosis is just a key characteristic of this disease so of course that will affect the lives of those living with it. When I was first diagnosed with MS I was working on a career in photography. I did a few weddings but quickly learned that most people want to book a photographer about a year in advanced. I got lucky with the weddings I had done already but it was so hard for me to agree to be somewhere and do something in a year when I did not know how I would feel in a week! So I sort of moved away from that career path but this affects our (people with MS) personal lives as well. Sticking to the wedding theme, I have friends getting married this year, one who wants me to participate in it! This makes me really nervous because I can’t just agree now and back out at the last minute you know? Pressure! Even though I want to do this I am nervous because I just have no idea what my health will be like by then!

People think you’re a flake

Well it’s not always something so “dramatic”, most the time it is as simple as a friend wanting to meet for lunch and at the last minute having to cancel. After a while that friend (and most the people in our lives I am sure) start to think we are just a flake, we are just always blowing them off. But we are not! Most of us (again, I am sure) have every intention of keeping our word but even in the course of just 12 hours how we feel can drastically change. I might agree to dinner in the morning but experience something in the afternoon that triggers a pseudo-exacerbation and bam! I can’t drive. But a lot of people do not understand this or think we are just making up excuses, I wish! Multiple sclerosis is just so unpredictable

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • @masbrautigam
    3 years ago

    Totally agree. Unpredictable is so hard for us and the ones we love. I have no friends due to this and can’t even be bothered anymore. They say the understand but really they din’t.
    Great article 🙂

  • Matt Allen G author
    3 years ago

    Yeah the friend thing is way to common, if I hadn’t been able to connect with so many other people who understand online I don’t know where I would be today.

  • DonnaFA moderator
    3 years ago

    Hi mascha! We’re glad you’re part of the community and appreciate you sharing your thoughts. Please know that you’re not alone, many members of our community share this unfortunate experience.

    The great thing, though, about our digital age, and about this great gathering of people in the community is that we get to connect with people who always understand, and that we might otherwise not have met. You may even be able to connect with people in your area! I’d like to invite you to also visit our Facebook page and join the vibrant conversations there as well. -All Best, Donna (MultipleSclerosis.net team)

  • 105bvmf
    3 years ago

    I lost my job of 35+ years and am unable to drive, due to dizziness and seizures. I feel guilty for not cleaning house, doing laundry and more. Most days, I can not plan anything. My legs give out easily. I get frustrated. The doctors keep doing more tests, and disagree on the findings of the results. I wish my family realized that my MS and my struggles are real. I do what I can, but it’s never enough.

  • Matt Allen G author
    3 years ago

    I think it’s a lack of education; my family “knows about” MS but sometimes it feels like they don’t REALLY get it so I get you.

  • Braco
    3 years ago

    Every now and again i’ll login and read some of the postings here

    Everything I have read is true specific and to the point.

    Reading these posts only reaffirms my belief that me and my fellow friends are posting our feelings about what we have to Live with mainly because doctors with deaf ears get it first. I’ve seen Many doctors and I have never felt any one of them Truely listened to me

    I am happy to hear you do not need to live with the stress of work. Unfortunately since being diagnosed six years ago my career has been destroyed and I am doing my best to raise four young children. My salary is half of what it used to be, i’m struggling more mentally than physically. And every time I feel a bit worse doctor just says to go for another $500 MRI

    I hope you all are doing better and I hope to one day get me myself And I back. Everybody misses him, my kids ,family, my friends. And so do I

  • Matt Allen G author
    3 years ago

    It’s a double-edged sword, glad I don’t HAVE to work (as much as I WANT to” but I lose so much sleep stressing about my financial situation. So really, I am “lucky” that MS didn’t hit after I had a family, house, career and other responsibilities but it’s definitely not a “kick back/relaxing” situation

  • L Grah
    3 years ago

    Hi,
    Don’t feel bad. I am the same way. And I love how you put it into words.
    Lisa

  • gmc
    3 years ago

    I never know what tomorrow will bring so when I’m feeling okay, I try to get things done. It works, sometimes…

  • Matt Allen G author
    3 years ago

    keyword, sometimes haha… I am the same…. Most the time****

  • Lisa M
    3 years ago

    This is one of the things that I hate most about MS, the never knowing just how Im going to be feeling tomorrow, let alone next week, I don’t ever commit to a month anymore, I just say, “If I can, I’ll be there, I’ll let you know” most get it by now and know I really will try.

    I used to be super active and was in constant motion every day, all day and now Im home 95% of the time, can’t drive anymore, can’t work, its a struggle to most things, Im guilty of the “better do it now” because I may not feel like it or be able to do it tomorrow, even the simple chores of cleaning are planned now and spread over several days instead of a solid couple hours like the old days, ugh! like another poster wrote, Im a clean freak…I have had to dial that down a bit for sure.

    Sometimes I think people, mostly family see me trying to do things as well as before, sometimes I appear to be only because the house is clean but they don’t know it took me 4 days to do it. Super fatigue has hit me hard this summer even though I stay out of the heat.

    Its very true, if you don’t live it, you really can’t understand.

  • Matt Allen G author
    3 years ago

    It sounds like you are describing my life, I mean, I have been cleaning my bathroom for about a week and it doesn’t look like I have done ANYTHING, although, I am also an OCD clean freak, ugh

  • Braco
    3 years ago

    Everything you are going through is exactly whats happening to me as well.

    Only people with MS really know how hard it is. Doctors, at least the dozen or so i’ve been to so far, don’t care. You are just another dollar to them.

    I’m struggling, 4 little kids, my career destroyed, back to where i was 13 years ago in terms of pay, no more contact with friends. Scks

  • Matt Allen G author
    3 years ago

    Most doctor really suck. I have finally found a good one but even he sometimes doesn’t seem to FULLY understand the impact this has on my life, it’s not just about touching my finger to my nose

  • Becky
    3 years ago

    this is so true for me. Something as easy as go for coffee across the street terrifies me. I beg off most of the time but friends misunderstand, and they think I don’t like them, or I’m antisocial. It’s quite real (anxiety), and I weigh the stress, because is it worth the impact it has on my energy and then my MS symptoms increase, thus vicious cycle . I think honestly and advocating for myself is best. People try to say, “oh I forget stuff too” etc which no it’s not the same. Nice try. I hate when they downplay and act like I’m overstating it. I am getting okay with letting people think that,and stating what I need anyway.

  • Matt Allen G author
    3 years ago

    Honestly? I know it is bad, but I have mostly just stopped caring what people think because I am just way too tired of people acting like I am over exaggerating, I know there is a better way but lately I just don’t have the energy to even care…

  • cw
    3 years ago

    No truer words were spoken about MS. It is unpredictable. Thanks for writing on this most important topic. I wish more people would understand this fact. I never know how to respond to invitations.

  • Matt Allen G author
    3 years ago

    yup, “I’ll make it IF I CAN”

  • MSFighter
    3 years ago

    Soooooooo true!!!! Girl, I’m in the same boat!!! I hate cancelling on someone last minute!! No one EVER understands! If I don’t keep myself busy and moving around there’s a good chance that sitting on the couch for 15 minutes might turn into a 3 hour nap. Once I get comfy, you will not get me up. I feel like a ton of weight is on me and it just takes too much energy to get going again. I am a major clean freak also. So yes even when not feeling well, I do chores. What happens if I feel worse tomorrow and it never gets done? That’s my fear! It’s a viscous cycle that is extremely frustrating.

  • Matt Allen G author
    3 years ago

    That is an issue that I have been wanting to write about also because I am often guilty of that too; “what if I get worse tomorrow? I will never get stuff done!”

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