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Sick and Tired of Being Sick and Tired

As I write this, we are in the midst of some warm days, temps in the 80’s with high humidity. You know, the exact kind of conditions that can make having Multiple Sclerosis a living hell. There are plenty of articles out there about the effects of temperature on those with MS, so that’s not really what I’m discussing here. In fact, temperature change is just one of many triggers that can adversely affect those with this disease. Rather, I want to talk about one of the net results of days like this, namely the frustration it causes. When I have a string of rough days, whether it be because of heat, or stress, or any number of situations that can worsen my symptoms, I get absolutely fed up! There are many times where I put on a brave face and carry on like nothing is all that bad, but the reality is that I am sick and tired of being sick and tired.

Not to complain, but…

If you are at all like me, then you likely hate the idea of people thinking you are complaining. After all, everyone has something to complain about and no one is as special as they likely perceive themselves. I certainly come from an ethic of “just put your head down and carry on”. It’s a feeling that I constantly battle when trying to write about this disease. The last thing I ever want is for people to think that I’m complaining. At the same time though, I hope that pieces that I write allow others to say, even if just to themselves, “OK, this guy understands, he has the same problems”. I hope that reading what I write helps assuage the b*tching that others desperately want to, but can’t, do. So please allow me to take off my happy face for a few moments and indulge in some frustration.

Multiple sclerosis sucks

This disease sucks. There, I said it! I’m tired of dealing with this disease, with this entire life. I’ve been diagnosed for nearly two decades at this point, and it’s not getting easier, it’s getting harder. I guess that’s sort of a given with an incurable and chronic illness, but I guess I never really thought about that too much in my past. I know there are some people that have a relatively mild course with MS and some that have a much more progressive version, but there are a lot of folks right in the middle, like me, too. I do not move as well as I once did, I am in pain nearly every day, I fall frequently, I get confused, I forget things, and I’m fatigued (oh man, am I fatigued!). Bottom line, this disease has made my body a very hard one to live in day in and day out.

The time dedicated to MS-related appointments

It’s not just the physical toll this disease takes on my body, it’s everything else that goes along with having a chronic illness like MS! The many doctors’ appointments, the many hours of just waiting to get into the doctors’ appointments, the numerous MRIs, all the blood taken, the therapy appointments, the waiting while getting an infusion, etc. There is SO much time dedicated to not only the critical maintenance needed with this disease, but with waiting for all of those appointments. So many people don’t realize just how much time is spent with these kinds of things. I don’t know about you, but all of that frustrates me. I’m left thinking, what else could I be doing with all of that time? That is, what could I be doing with that time, if I felt good?

Bad days with MS: I need a vacation from my body!

Between the way my body feels/behaves and all of the effort I have to spend to keep it going (seriously, I feel like I am constantly patching holes in a boat, only to have two more break open every time I get one patch completed), I’ve just had enough. I’m sick and tired of being sick and tired. I want a vacation, not to some great resort (though that’d be nice too), but from my body, from my life with chronic illness. It feels so overwhelming at times and being who I am, I tend to just bite my lip about it. Even when I write about my illness, I often try to find something hopeful to mention about it. Some days, like today, that just doesn’t feel right. So I don’t have some hopeful, feel-good advice to preach to you today. This sucks, it probably sucks for you sometimes, too, and I get it. I hope our days are better tomorrow, but even if they’re not, remember we’re not alone in this, this sucks for a lot of us.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • Frankie J
    2 weeks ago

    Wow Devin, is like you are talking about me. I understand and feel connected with you when you say you hate the idea of people thinking you are complaining.

  • Devin Garlit moderator author
    1 week ago

    Thank you @Frankie J, I think you’ll find there are many people similar to both of us!

  • vvq78
    3 months ago

    Very well said Devin. Thank you for sharing your experience. It truly feels like you took the thoughts right out of my head to write this article. I too wish I could take a vacation (at a swanky resort) from my ailing body, lol! I’m actually going on vacation next week and wish I could leave my body behind

  • Devin Garlit moderator author
    3 months ago

    Thanks so much @vvq78!

  • bandi
    3 months ago

    I hear you Devin. I’ve been dealing with this disease for 15 years and it really bites. These Hot and Humid days are really hard. When it’s 80 degrees and high humidity. I get exhausted just watering my garden in the morning. The sweat is just dripping off me. After wards I go inside to the A/C (I thank god for). I go into my bedroom and drop on the bed and think of All I’m suppose to be doing today. Trying to work up the energy to hop in the shower and clean myself up and prepare for the day

  • Devin Garlit moderator author
    3 months ago

    Thank you @bandi, these hot and humid days certainly make is much harder!

  • Tonyh
    3 months ago

    Wow Janice I agree 100% about hating this disease. In my own experience, it can be lonely, painful and yet other days aren’t so bad. I guess we just hang in there.. we go through our own kind of experiences.

  • Janice
    3 months ago

    Thank you for being so honest with your comments. I have always felt guilty when you hear all the “be positive” and “I have MS but it doesn’t have me.” I hate MS and it has had me for a very long time and it just gets worse as time goes by. I am so frustrated that the life that I used to enjoy is a nightmare. My problem has always been cognitive so I can’t remember how to do things I also am now falling too much which is painful and I am scared to do much that requires much walking. The worst part is that I know it is as good as it will ever be and only go downhill. I wish there was a place that people with MS could live in a community together and just enjoy living with people that you don’t have to explain anything to or feel guilty for not being able to do everything.

  • Devin Garlit moderator author
    3 months ago

    Thank you @Janice, I like to think my honesty, while it may not seem positive, also isn’t a negative. I think if you can admit you do have some issues, you’re better able to adapt and deal with them. Obviously not everyone sees it that way. I also think it’s important to see that other people feel the same way, that it isn’t all easy, that we all get fed up at some point. I think it’s important that folks realize that and hopefully not feel like they’re the only ones who feel that way, because many people do.

    As for that favorite phrase of people, this is how I feel about that: https://multiplesclerosis.net/living-with-ms/ms-ms-sort/

  • Janice
    3 months ago

    Thanks you for being so honest with your comments. I have always felt guilty when you hear all the “be positive” and “I have MS but it doesn’t have me.” I hate MS and it has had me for a very long time and it just gets worse as time goes by. I am so frustrated that the life that I used to enjoy is a nightmare. My problem has always been cognitive so I can’t remember how to do things I used to have not problem doing. I also am now falling too much which is painful and I am scared to do much that requires much walking. The worst part is that I know

  • SherriD
    3 months ago

    Yes, so sick and tired of being sick and tired. Fatigued and nautious, burned out and dizzy, whatever, but I’m very frustrated. The summer heat is a major drain on my energy. I have become a recluse in the summer-too hot and in the winter -too cold.

    Devin, thank you for your articles, You know us and speak for us , all.

  • stacip
    4 months ago

    Well said. How do you know my life.

  • Devin Garlit moderator author
    4 months ago

    Thank you @stacip! Sadly, I think it’s many people’s lives.

  • DL1231
    4 months ago

    Well said. That is pretty much how I feel in a nutshell on a daily basis.

  • Devin Garlit moderator author
    4 months ago

    Thank you @DL1231, appreciate you taking the time to comment!

  • saraslarson
    4 months ago

    Thank you SO, SO much for writing this!!!! I am in the midst of one of these negative cycles, and I needed to hear that I’m not alone. I keep telling my husband, I just need a break from my body. I’m just. Tired.

  • Devin Garlit moderator author
    4 months ago

    Thank you @saraslarson, you are definitely not alone! Hang in there!

  • 6fh0mq
    4 months ago

    Hey Devin, I am definitely part of your fan club and I’ve decided that what makes your writing so appealing is your honesty. You take on the subjects that we face but you don’t sugar coat the details. You provide a sense of comradery. Blowing out the candles, my birthday wish this year was – vcif – I could magically exchange bodies with my husband for just 10 minutes so that he’d really “get” what I’m talking about when I complain about the pain. Yes – I am tired of being me.

  • Devin Garlit moderator author
    4 months ago

    Thank you so much @6fh0mq! I’ve always had a hard not being so open and honest, I finally found a place where that can be helpful! Seeing that someone understands is so important, I think just knowing we aren’t alone can have an amazing effect. We tend to be surrounded by folks that can’t possibly “get it”, no matter how empathetic they are, I hope that I can show others that someone else out there does understand. Thanks again, appreciate you reading and taking the time to comment!

  • corgi9
    4 months ago

    Devin
    Let’s market T-Shirts with the monogram below

    SNTOBSNT

    (Sick and/N Tired Of Being Sick and/N Tired)

  • Devin Garlit moderator author
    4 months ago

    Thanks @corgi9, haha, I love it!

  • CatDancer
    4 months ago

    I’m tired too, all the time. There’s varying degrees of what tired is but it’s always there as my disease has progressed. And I really hate telling people “I’m tired”, so I lie a lot about that, even to my family. They def don’t want to hear it and I think can’t hear it even if I tell them. Just like you, I am sick and tired of being sick and tired. And I try so hard not to tell myself that I’m not sick, that this is just the way my body exists in this world. But deep down, I am haunted by this unforgivable illness. It has forced me to let go of dreams and certain life goals I had at a very young age. I’ve experienced grieving things that I never had–I can’t even figure out how that’s possible but I’ve managed to experience that. And I can’t figure out why I’m still here sometimes, because even breathing can begin to feel exhausting. Appointments!!! I have spent my best thinking time making and arranging appointments this week and even going to some. When people ask what I’ve been doing and why I’m so busy, I don’t even want know how to explain what I spent my doing–going to endless appointments, making endless appointments, picking up prescriptions; I really don’t want to tell people these things, but I do. This disease is truly a full-time job. Constantly putting patches on holes, yes, that seems to be the way of getting by now. It’s unbelievable how that works. But I do applaud you Devin, for continuing to do it. To have the strength to keep on taking care of your health, to keep patching up the holes and to be so honest takes a lot of courage. We all need your words and thoughts. I know I need them.

  • Devin Garlit moderator author
    4 months ago

    Thanks @CatDancer, it definitely feels like being on a boat that sinking and I’m constantly patching holes. I too hate telling people that I’m tired, I also feel that saying “I’m tired” in no way does the fatigue and exhaustion justice, it’s so much more than being tired.

  • CanadianguyPete
    4 months ago

    I hear you Devin. I think we all hear you and Thank You so much for putting into words and saying what most of us feel about dealing with MS. You have a great gift in your ability to communicate the many frustrations and feelings and all else that encompasses this sorry disease. I look forward to reading your posts, as they always hit home and I (we) can all feel a little better sometimes knowing we are not alone. Please keep up the great posts!

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @CanadianguyPete, I really appreciate that!

  • marvcrawf
    4 months ago

    Devin, How did you get into my head? You seem to always know exactly what I am thinking! We have had a very rainy summer here in Colorado, so the humidity is much higher than normal and I feel like it is slowly killing me. Summer is hard enough as it is, but this is rough and I am over it!
    I always appreciate and look forward to your writings because you always know how I feel. Thank you Devin!
    RRMS 25 yrs

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @marvcrawf! I think so many of us feel the same way! Ugh, humidity is the worst (https://multiplesclerosis.net/living-with-ms/hell-humidity/), with hot temps, I feel you can usually get cool, not so with humidity.

  • ladyfarial
    4 months ago

    There are days when I feel like I am a prisoner in my own body. You are right I am sick and tired of being sick and tired. I now have to deal with spacity in my right leg and the pain is some days more than I can deal with. To make matters worse I am coming to the end of the second stage of this disease. Some days I feel like I am just taking up space. They discovered that my MS came from having the Human Parvovirus, of course they don’t know how I contracted the virus. The MS first showed up in my left eye and then later on in the right eye and then back to the left. Now the pain in my eyes come and goes and limits the time I can do the things I love. Spastic movements in my body also come and go. But the pain we all go through is the same. Even though our stories about the disease may be different there are things we all share. It’s my opinion that the biggest thing we share is trying to figure out when and where we lost ourselves and how do we go about getting ourselves back?

  • Devin Garlit moderator author
    4 months ago

    Thank you @ladyfarial, I very much understand how you feel when you say you feel like a prisoner, it’s a very good description for so many of us. It’s hard not to think about where and when we lost ourselves, I can’t say I don’t wonder that often. However, lately, I try to focus on who I’ve become, who I’ve evolved into. Physically, I’m a shell of who I was, mentally some days too, but I do think I’m a stronger person because of it all, I do think I am more appreciative of the world around me, I think many of us our, and that’s important to recognize.

  • asapcynthia
    4 months ago

    Hey Devin! I thought I was the resident whiner! But who can say it better than sick and tired of being sick and tired? MS is like Chinese water torture ( no offense meant) or death by a thousand paper cuts. It’s so darn cumulative. Symptom by symptom year by year takes its toll and you’re ready to say ‘uncle’ but MS has no ears and can’t hear you scream. My biggest problem is making mistakes, which I do, like forgetting to tell the pizza guy our address when I order. There was a perfectly reasonable answer, the person who I told it was a delivery put the phone down and somebody else picked it up to finished the order and thought it was pick up. But I couldn’t figure it out while my husband was crabbing about it, it took a minute to get my thoughts straight. I figured it out about a half an hour later, but my husband wasn’t interested in my ‘excuses’. He asked me what was wrong with me and I said I have ms you know, and it’s only going to worse. But he disagreed with me. I can’t blame everything on ms he told me. When I asked him what medical school he graduated from, things could have ratcheted up from there, but we were saved by the (door) bell when the pizza man came. The heat does no good for anyone’s mood. Neither does ms. Stay cool.

  • Devin Garlit moderator author
    4 months ago

    Thank you @asapcynthia! Cumulative is such a fitting word! Might want to point your husband to a few articles on this site to help broaden his knowledge some! You stay cool too, I feel like that’s the best wish we can give each other this time of year!

  • shloucksville
    4 months ago

    Hi Devin! Add me to the group that also enjoys your posts. I was just mentioning to my hubs that if I could only figure out how to lesson some of this fatigue, maybe I could get through my workday better and then I saw your article title. Today’s one of those days that I’m so tired it’s ridiculously hard to function. So I appreciate being able to hear that other folks are struggling too. Thanks for sharing your experiences so we aren’t so alone out here. : )

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @shloucksville. It’s a struggle, I know for sure, and some days nothing will work out. You’re definitely not alone though, hope your day goes decent today!

  • MickeyLou
    4 months ago

    You are so on point Devin. I am right there with you, especially the last 4 months. Along with trying to deal with my Relapsing MS, I took a flip in March on the ice and fractured my pelvis and my humerus. A week prior to that, I had a mini-stroke. In trying to determine the reason for the stroke, they discovered a lesion in my neck which was suspicious for thyroid cancer. The bad news just kept on coming. And, like you mentioned, the waiting for appointments and results is exhausting. Two weeks in a hospital and two weeks in a long term care facility did me in. I am home now and I am slowly healing, starting to use my legs again and going to Physio. I also got good news that the neck lesion was benign and passed all my heart tests. So there is a light but I am exhausted, frustrated and fed up. My arm is not healing very well as supposedly the MS is causing the nerves in my humerus to misfire and I am constantly having painful spasms causing lack of sleep. So, Devin, I get you. I try not to complain as well, but enough is enough. Thank you for your honest writing and helping us know that we are not alone. I apologize for the long response but it feels good to let it out.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @MickeyLou, sorry to hear you’ve had such a rough time of late. Hang in there and always feel free to vent here, helps to get it out sometimes!

  • Legsonstrike
    4 months ago

    I really love his articles!! He’s very talented in the way he describes things

  • Legsonstrike
    4 months ago

    How can you be so on point with everything?? You are just fabulous at describing things the way I want to but it never comes out of my mouth as nice as I want it to!! Thank you again, Devin!!

  • Devin Garlit moderator author
    4 months ago

    Thanks SO much @Legsonstrike, I very much appreciate you taking the time to say that!

  • Legsonstrike
    4 months ago

    I have all the time in the world, why wouldn’t I post a comment? Anything I can do to influence people is a blessing for both of us!!

  • Shelby Comito moderator
    4 months ago

    I’m glad Devin’s article helps put words to your personal experience @legsonstrike! Thanks so much for taking the time to comment. – Shelby, MultipleSclerosis.net Team Member

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