MS Doesn’t Care About Plans

MS Doesn’t Care About Plans

Something that people do not always seem to get is that when multiple sclerosis “hits” it “HITS”. You may have had plans with a friend months in advanced but the day you are supposed to meet up? FLAIR. You are fatigued, dizzy and hardly able to walk. It’s not like when you feel a cold or the flu coming on; you can’t always just suck it up and power through the day. Sometimes it’s like your body is either on or off regardless of how important of a thing you got going on that day; MS just doesn’t care.

I have always hated planning ahead; I am more of a get up and go in the spur of the moment kind of guy. I hated when my ex-girlfriend needed 24 hours notice to plan to just go get coffee. I like saying, “hey, let’s get coffee” and then just getting up and going. “Spontaneous”. A friend would call me in the morning and ask if I wanted to go on some long hike and I would just throw on my boots and wait for him to pick me up. That was always me, especially after I was diagnosed with MS. You see, I never know what I will feel like tomorrow, I really am not sure what I will feel like in an hour really. So I would rather someone randomly ask, “hey, do you want to get lunch with me?” because it’s easier to predict what I may feel like in a few hours based on how I feel “now” than it is to predict what I may feel like in a week.

Trying to make plans sucks because MS just doesn’t care about them! I have had a plane ticket to Colorado for almost a year, just to visit friends you know? Well, it was about to expire and I wanted to make it out there while the weather was still cool so I booked a flight about a month in advanced as I was feeling well enough to take this little trip on. But then I got there and… my fatigue was horrible. I just wanted to sleep! That is what I would have done if I was home! But no, I am stubborn, I pushed through it, I made myself try to be active, I mean, I never get to see my friends! Well… I pushed myself into a relapse. I feel extra horrible now and instead of doing the things I was planning on doing when I got back I am struggling to walk, stay awake, think and see and now I am trying to get in for steroids so that I can return to the state I was in before I left. MS does not care how much progress I made this year. MS does not care that I really wanted to see my friends. MS does not care that I was planning to get all this stuff done this month. MS does not care how much I needed a break from it all. MS doesn’t care about anything! When MS wants to act up it acts up no matter how inconvenient it may be to you!

It doesn’t matter if you are male or female. It doesn’t matter how old you are. It doesn’t matter if you have kids or a busy job! Have you been planning a year in advance for a wedding you are supposed to take part in? Now you get double vision for thinking MS cares! Because sometimes it really does feel like MS is some sort of evil entity who’s soul purpose is to try to inconvenience you in the most inconvenient of ways! I wish I knew of a way to make plans in life without the possibility of MS coming around and screwing things up but I quickly learned that the most consistent thing about MS is it’s inconsistency.

How do you deal with planning and MS?

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Comments

View Comments (31)
  • Grandma5
    1 year ago

    This so describes me. Especially the going on vacation and doing things even when we want to stay in bed. The last three times I went on vacation I either ended in the hospital when I got home or the hospital where I was vacationing. You would think we would learn.

  • Matt Allen G author
    1 year ago

    As much as I LOVE the hospital, staying in the hospital in Hawaii is not much better than the hospital in my home state…

  • RuthGeller
    1 year ago

    I have a somewhat different point of view. Having to cancel plans I’ve made because of my MS – sucks. But life doesn’t have a blue print. Three years ago my married middle aged daughter lost her husband. She left in the morning to do errands and came back early afternoon to find him dead on the floor of the shower from a heart attack that apparently came from no-where. Several years ago my granddaughter riding in the back passenger seat of a car was hit dead on by another car running a red light. She suffered a severe concussion and had many problems for a period of time. I’m not trying to be maudlin because those of us with MS know that life’s journey is unpredictable. Ruminating about what life is not; does not help me move forward in any way. What helps me if focusing on the present and concentrating on what is. Do I miss out on things I want or have planned to do? YES!. Does it make me angry? YES! But I don’t find that saying “Woe is me”, helps me at all. Instead I say some salacious four letters words a couple of times. Then I begin to accept, breathe and relax; focus and concentrate on what the day can bring me. I find it helpful for me to put myself in a better place focusing on what is instead of what isn’t. Some people say: “oh, how very ‘Pollyanna’ of you. So if I give you sour lemons now you’ll tell me you can make lemonade”? The answer to that is yes. But I make the very best lemonade.

  • ASAPcindy
    1 year ago

    So true. People blame me because I back out. I don’t try hard enough. I have been pushing this Boulder called MS uphill for over 20 years and I am tired! The analogy of having a car with a broken gas gauge is so real. I don’t know how much gas I have or how far I’ll get on any given day. Cut me some slack, world!

  • Matt Allen G author
    1 year ago

    I don’t think people can always understand this because they have never experienced it, it’s not the same as being “super tired”…

  • LaurieA
    3 years ago

    You have taken the words right out of my mouth. Tonight, I feel hopeless. I feel depressed knowing that this disease is eating me alive, little by little. I’m almost not me anymore. It’s indescribably, incredibly sad.

  • tjodedixon
    3 years ago

    Fabulous article! bravo! written as if I was speaking to you!Thank you.I’m new to ms. and still struggling to even get a neurological appt.! i’m a healthcare provider(surgical tech) 25+yrs working to save lives everyday with good insurance and I cant get in to see a neurologist. disgusted with healthcare.Gonna persevere!!

  • Matt Allen G author
    3 years ago

    it is SO HARD to get in to see a neurologist, they are always booked way out! Our healthcare system does have many many many issues to put it kindly

  • labsrspecial
    3 years ago

    After 19 years of dealing with this monster we all call MS- I don’t make plans- I’m always on stand by- If I buy a ticket to something I always have some else to buy it and go in my place!! “I’m just on stand-by” sorry Love you- but can’t promise anything!! And if they truly love and understand MS- then they will learn to adjust to my stand-by

  • Matt Allen G author
    3 years ago

    Unfortunately I know what you mean but I still try, I am too stubborn not to haha

  • Evelyn R
    3 years ago

    I have this problem a lot, but how do you explain it to someone who thinks you are just blowing them off. This includes family. I deal with the “if you can’t see it, then it doesn’t exist”.

  • Matt Allen G author
    3 years ago

    I honestly do not know. I mean obviously you have to sit them down and really try to explain it but they will only hear what they listen to…

  • Nancy W
    3 years ago

    MS does care about plans, because some plans mean stress, good or bad. Stress can cause a flair. So, Easter is coming and I plan to have an Easter Egg hunt for my grandkids. I try not to stress over whether I will have the energy, or get everything done beforehand. It always works out, even if someone has to take over what I planned to do. But, you better believe I will not be planning anything for Monday.

  • Matt Allen G author
    3 years ago

    Yes, stress is the culprit here

  • Charlie
    3 years ago

    Matt has so eloquently described my life. I always agree to plans, and always with the best of intentions and on about 80% of occasions I pull out. It sucks! But it doesn’t stop me trying to turn up. I end up spending a lot of time on the couch but I need to remind myself that although I’m only 43yo I’ve lived a full life. I travelled and lived in the UK when I was 26, I’ve worked in other States and have had a wonderful career. I work now probably 2-3 days a week and although it’s not ideal I’m a hell of a lot more fortunate than others but some days it’s frustrating…

  • Matt Allen G author
    3 years ago

    Yes, it’s important to still try even if most the time it doesn’t work out. You are definitely fortuneate that you got to experience “life” before MS got in the way, not everyone (like me, diagnosed at 20 years old) can say the same

  • Tammy
    3 years ago

    Oh boy! You certainly hit the nail right on the head! And how about the converse?! If I have an absolutely heavenly day with family or friends, I pay for it for the next few days! I’ve been known to sleep for 3 days following a visit. Makes me have to evaluate every activity to determine if it’s worth it!

  • Matt Allen G author
    3 years ago

    That is what I am noticing RIGHT NOW; I have to decide if every task is worth being destroyed the next day! Frustrating!

  • Theresa
    3 years ago

    Spot on, Matt. I always say I am spontaneous by nature, but MS makes me spontaneous by necessity…and not in the fun, bohemian way of the past.

  • Matt Allen G author
    3 years ago

    haha agreed

  • Masala
    3 years ago

    MS does not discriminate that’s for sure. It catches wind that you’re making plans and it laughs. I never had to think about so many things before I go anywhere…what’s the weather like, too hot, where are the bathrooms, is there going to be a place to sit if I get dizzy?, am I walking like I’m drunk today?…the list goes on. Ughk.

  • Matt Allen G author
    3 years ago

    haha, the bathroom situation is always my first thought, from the plane ride to wherever I am staying to where to sit at a restaurant etc etc

  • Azjackie
    3 years ago

    Incredibly and unfortunately true. So much to consider.

  • behrele
    3 years ago

    This is spot on! Thank you for sharing this. It is very well said and I may use it to help my friends and family understand the fact the MS just doesn’t care!

  • Matt Allen G author
    3 years ago

    Hope it helps!

  • New to me
    3 years ago

    You nailed it good read.,. I used to be a “man of my word” if I said I would be there or do something it always happened no matter what BUT now days I find myself not committing to anything more than a day out people are beginning to think I have become a “shut it” but I never know when a flair is going to happen I have recently discovered steroids can help but they are not always available on short notice..,, so far whole plant CBD oil seems to be working no intense debilitating flair in 4 months I am hoping it’s not a coincidence.,, take care and good luck

  • Matt Allen G author
    3 years ago

    “shut in”, oh how I hate that term now haha… I have been looking for a good CBD oil but so far can’t find one, awesome that it seems to help you!

  • skcullers
    3 years ago

    I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.

  • Matt Allen G author
    3 years ago

    I honestly have never even heard of that, I will definitely be looking into this! Thanks!

  • Erin Rush moderator
    3 years ago

    Great advice, skcullers! Thank you for sharing it. Best, Erin, MultipleSclerosis.net Team Member.

  • Gymrat
    3 years ago

    Yes sir your article is on point!

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