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A Rant from a Rough MS Moment

Not everything I write about can be well thought out (if any of it is). There are days, like this one, where I simply need to attempt to get something out. To be raw and unfiltered, in order to fully explain what something is like for me, to record how this disease can affect me. This is one of those times.

Having problems moving

It’s an ordinary day (a Tuesday, I think), and I had grand plans. Grand for me, anyway. My goals were to finish an article about MS and using a weighted blanket; I then wanted to clean my bathroom, and take my dog on a short walk. If I got all that done, I wanted to clean up the living room. Tasks that would be minor for most people, certainly to the Devin of just a few years ago. I’m having trouble though. I am having problems moving. Lifting my arms, standing, walking, even literally holding my head. I am barely able to type this (and I know if I finish, I’ll be wiped for the day, and it’s not even noon yet). Do you know what it is like to have so many things you want to do, even minor ones, and you can’t because it’s hard to move parts of your body? It’s awful.

Nothing is visibly wrong

I hate to write something that sounds so dismal, I really do, but at the same time, if I were able to read or hear that someone understands what I’m talking about, damn, I think that’d somehow make things feel a tiny bit more bearable. With most of my problem, if you were to peek in on me, you’d see that I’m slumped over with my laptop, but you’d likely not notice anything wrong with me, not visibly anyway. I “look fine” is what you’d probably say.

Disability was the sentence, and my body is the prison

In a sense, a lot of my body is fine. My arms and legs and other part work just fine; the problem is that my brain’s connection to them doesn’t. I am trapped in my body as I try to make it move and it won’t, or at least it won’t as much as I’d like. My body is a prison, and I can’t open the gates no matter how hard I try. It seems futile to even attempt to explain the level of frustration I have. I’m not even trying to do the same things that normal people do. I’ve long since been kicked from my career and relegated to this life. Disability was the sentence, and my body is the prison. On days like this, I feel like I’m not only in prison, but I feel like I’m in solitary confinement, too.

Robbed of control

Another thing about this is that this isn’t even what I would consider a rough day. I had one of those two days ago, when not only was I heavily fatigued and feeling like I was moving through mud, but my body was wracked with spasms and pain. That was a day when part of my body, because of the spasms, would move without me wanting them to. Now today, I’m having times when I can’t make my body move at all. Doesn’t that seem so, so messed up? I feel like I have zero control. That’s what years with this disease has done to me. It’s robbed me of control. Of my limbs, of my days, of my life.

Days like this

I don’t know if I’ll share this rant and my frustration or not. I don’t want people thinking I am looking for sympathy, because I’m not. I do want folks to know, though, that sometimes people like me just can’t move, just can’t do what we want, even when it’s something simple, that others would casually dismiss. I want people to know that it sucks and that not everyone with MS is out running 5Ks. At the same time, not everyone is in a wheelchair either, not everyone even uses a cane all the time, but they still have days like this where they can’t move and can’t do what they want.

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

Devin

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Comments

  • Kritty
    7 months ago

    Thanks Devin……..As I’ve mentioned to you before, I can completely relate to your articles. Keep writing….Your writings are very helpful. For me, after I read them it helps me get my perspective back on track. You just described the last month of how I’ve been feeling. In my mind I have all these plans for the day. It comes to a screeching halt though as soon as I get up to start anything, I’m so fatigued and lethargic within 15-20 minutes I have to go rest for 2-3 hrs. Then I regret ever thinking I could do anything even simple day to day household things such as vacuuming my living room. I keep pushing myself to try again tomorrow, and then tomorrow and so on and so on. There are days I feel like I’m confined to my home and stuck in a time warp. Hopefully after my treatment next week things will turn around for the better. One can only hope. Bless you and keep writing.

  • Lifeisnotfair
    7 months ago

    I always identify with your written words, Devin and I always look forward to your next article! Please don’t stop writing, we all are suffering right along with you and gauging from the other comments here, I think it’s safe to say, that we all look forward to seeing your posts! I’m having one of those really bad days, from the standpoint of my spasticity and not being able to move very well, not to mention that my balance won’t allow me to stand for very long, before catching myself in a fall. My vision and my voice have taken a hit also. I hate hearing myself speak, because of what the spasticity has done to my vocal cords. If not for the Modafinil, my fatigue would have it’s way, as well. On some days, that doesn’t even help, so I guess I just got lucky today, LOL! We may not have physical chains around us, but we may as well, because we are definitely in our own prisons, the prison of the chronically ill. Just remember that we are here for you, and anxiously awaiting for your next post! Thank you so much, Devin!

  • Devin Garlit moderator author
    7 months ago

    Thank you SO much @Lifeisnotfair, I very much appreciate you taking the time to say that!

  • 6fh0mq
    7 months ago

    Thanks Devin. You read my mind. So thankful to know that somebody, anybody out there gets it. It gets so tiring…

  • Devin Garlit moderator author
    7 months ago

    Thank you @6fh0mq, you aren’t a lone, always remember that there are folks out there that do get it, that do understand, even when it doesn’t seem that way!

  • Contalita
    7 months ago

    Hi, & Thanks Devin soooo much, for sharing, I’m the kind of person that likes to approach whatever is happening with both eyes open, your article help me with what may happen, before being diagnosed I had days where I felt like you days that were pretty much like yours… the big problem I had,I was a social worker for a non-profit, assisting young single moms and veterans, in 2018. at that time things for functioning physically but mentally I was so tired, since I lived in the suburbs of Allegheny County I had a long commute one bus into town to connect to a bus headed uptown. The way I tried to cope was using vitamins and eating more foods that help with energy wasn’t working, I found myself having 5 cups of coffee before leaving since it was 20 minutes before the next bus take me out of town I’ve have three more cups of coffee(@ Wendy’s because the two more were free) The coffee work for a little while, but; once I was back home I found I had trouble sleeping, since it was spring and I have allergies I doubled up on Benadryl took 4 at 25 mg to fall asleep and of course not too much longer,I needed more and more, lots of coffee during the day, Benadryl; at night I now up to eight tabs a day to get some sleep. if I had known I had MS I probably could have been getting the proper help, the nonprofit I worked for provided insurance, that was mandatory.I started to have problems with my bones so I went to a doctor for arthritis, starting having problems with my eyes ect.The yr. 2009, after long suffering after long suffering ,my mom had passed passed away from Alzheimer’s and in the same month of January there were rumors of a layoff where I worked, & since I was the last social worker hired in 10 years I was the first fired ,at the same time I start at wondering about my brain, all of the mental symptoms of fall under MS. sarted to happen, on some days my body would work and some days my mind just wasn’t quite what it needed to be. Devin, your article did a great job explaining to everyone with MS as well as family and friends of what challenges may come. Devin, once again thank you , for taking your precious time and using it to write this article☺!

  • Reshar
    7 months ago

    Wonderful. That’s not the best response. For this MSer
    I understand. Me too Thank you.

  • Reshar
    5 months ago

    I typed my response wrong. ( shocking, not so much I have MS) I meant to type best response. Oh odd titbit our dog’s name is also Ferdinand but I call him Fred. It’s just easier to say Fred.

  • Devin Garlit moderator author
    7 months ago

    Thank you @Reshar!

  • marvcrawf
    7 months ago

    Devin, I hear you and I understand your frustration! I have the same problem from time to time.You are not alone! We are all here for you, so rant away!
    BTW, I can’t wait for your stories. They help me cope knowing someone else understands! Keep your head up, you’ve got this!

  • Devin Garlit moderator author
    7 months ago

    Thank you @marvcrawf, I appreciate hearing that!

  • Yoshitail9
    7 months ago

    Hey Devin
    I know exactly what you mean. I’m so tired of being so “good looking,” appearing like there’s nothing wrong with me but feeling so sh_tty. Most of the time I just suck it up and move on. Everyone has their problems and we are stuck with ours. I’m lucky because my wife, who was my girlfriend when I was diagnosed 40 years ago, has stuck with me, although even after all these years cannot walk in my shoes or actually know what I go through with the invisible symptoms I/we endure. We’ve had our ups and downs with my MS but we soldier on. Keep the faith knowing that those of us who understand, stand with you.

  • Devin Garlit moderator author
    7 months ago

    Thank you @Yoshitail9! And thanks for sharing some of your story too!

  • bonnie63
    7 months ago

    Hi Devin, I hear you screaming and I get it. Sometimes I just stare at a body part and realize that I have no control over it, what the hell.

  • Devin Garlit moderator author
    7 months ago

    Thank you @bonnie63, it’s so frustrating!

  • michael honeycutt
    7 months ago

    Oh man, I hear you! I’m not in devastating pain RIGHT NOW, but I’ve got all the energy of a sloth on Valium in very large doses. I’m so tired of watching my wife do everything out in our yard just because I can’t do it! I look okay but even walking zaps my energy so bad that I’m not doing much of it today. I’m a sexy beast, just don’t ask me to do anything but sit here and look amazing. I simply don’t have the energy during rainy weather. Seems that my muscles know how to tighten up and stay that way. I can strike a pose for extended periods of time. I just can’t Un strike that pose for hours after the camera guy is long gone and the photo shoot is long over. Folks don’t realize just how hard it is to be this macho!

  • Devin Garlit moderator author
    7 months ago

    Thank you and ugh, sorry to hear @michael honeycutt, keep up the fight man!

  • DelightedHands
    7 months ago

    Yes, these are the hard parts of MS; looking fine and feeling like a 110 years old. (I don’t know-maybe if I asked someone who is 110 yrs old-they would still have better brain-body responses! lol)

  • Devin Garlit moderator author
    7 months ago

    Thank you @delightedhans!

  • Joe1
    7 months ago

    Don’t worry Devin it can still get a lot worse. Unfortunately you will most likely look back at days like that and wish you could have a hundred more just like it.

  • Dorry
    7 months ago

    Well said Ilfagan I felt the same way. An insensitive reply. Put your brain in gear before you open your mouth because this reply is offensive to those who suffer pain. some things cannot get any worse. They are the worst they can be.

  • llfagan
    7 months ago

    I don’t think this is a particularly helpful comment. It’s like saying, “You have no right to experience frustration at having a problem if another person’s problem is more severe.”

  • ladyjeff00
    7 months ago

    Devin- I hear your struggles. I am in mid relapse and even making phone calls takes a gigantic effort. People don’t get it. Being in our bodies is work. So this week I am putting on my best fake smile. Nap time. Feel better, know you are not alone and you are more than deserving to have a day where all you can do is rant. Tomorrow is another day and here’s hoping it is better…you got this it never has you

  • Dorry
    7 months ago

    Devin I am sorry for every insensitive reply you get. Rant all you like this is the only outlet for pain and frustration ladyieffoo expressed this well. I do hope you have better days. Each new day brings different challenges and often they don’t change. Just know you are not alone and many of us are with you in your pain because we understand.

  • Devin Garlit moderator author
    7 months ago

    Thanks very much @ladyjeff00!

  • Lynda41
    7 months ago

    Beautifully said, I also hear your struggles Devin and am glad you posted so honestly about what you are going through, it helps the rest of us not only know what is happening to you at the moment but lets us know that we are not alone. You are not alone. And tomorrow is another day. Although it may not seem like it now, you will feel better, even if it’s only a little bit and the Sun will shine again. Best Wishes, Lynda 🙂

  • jan18
    7 months ago

    Devin, Thank you so much for sharing even though it is difficult to do so. I am so sorry for what you are going through — it really sucks. Please rant as much as you want if it helps you get through a day — also, your rants are clearly beneficial for the MS community who suffer along with you.

  • Devin Garlit moderator author
    7 months ago

    Thank you @jan18, very much appreciated!

  • Shelmonkey1013
    7 months ago

    I cannot thank you enough for this, Devin. Truly it is the most frustrating thing in the world with this illness that we look “fine” but feel so broken. No control. Simple tasks take so much energy. I appreciate you putting this out there. Snowflake Disease. There are so many variations and we cannot be down on ourselves that we have this particular version. We did not choose this. I am recently diagnosed. RRMS. 2/21/19. It has thrown me through symptoms I never in my life thought I would need to battle. But here I am. I won’t show you sympathy, no. But you do, however, have my empathy. I see you. One step at a time and embrace each moment as it comes.

  • Devin Garlit moderator author
    7 months ago

    Thanks so much @Shelmonkey1013, I/m glad to hear that you found this useful!

  • chong61
    7 months ago

    Devin,
    I DO understand what you are talking about and I also know the feeling of being trapped.

    Please know that you are not in solitary confinement, I am there with you. Plus I imagine a lot of others are also.

    I think this level of your post was refreshing as I sat here all day trying to not fall out of my chair, now I know you was posting a rant, just what I needed.

    Thank you Devin. I think of you as our fearless leader, but I also know you are a person with this horrible disease. I think it is perfectly fine to rant, I do it all time.

  • Devin Garlit moderator author
    7 months ago

    Thank you @chong61!

  • zeus73
    7 months ago

    Yep. I hear you loud and clear, Devin.I used to make lists of things I wanted to do and got great pleasure out of x-ing out the completed ones. Gave me a great feeling of accomplishment and progress to see those lists all x-ed the heck out. I rarely make lists anymore. Two reasons. One, no need to write down a list of two items, and two, now my lists remind me of what I have NOT accomplished. Not my favorite subject at all.

  • Devin Garlit moderator author
    7 months ago

    Thank you @zeus73, I very much understand!

  • Mererid
    7 months ago

    Amen. I’m usually positive in my attitude, but I can’t sustain that all of the time. Like you, I’ve been having a days of frustration at not being able to do the simplest of tasks, let alone the tackle the big things that are piling up as well. I might start the morning feeling ready to take on the day, but by lunch time, my brain feels like it’s been working for 24 hours already and can’t do any more, and my body is heavy and slow. I go days without being able to make it into the shower. All I want to do is sleep. And you’re right, not everyone with MS is running 5Ks, but it often feels like this, which then adds to that feeling of isolation and not being/doing enough, and feeling guilty for resting your sore body and trampled mind. Thanks for reflecting the experiences with which many of us will relate. People might think we’re well, but that’s because many of us have adopted such positive coping strategies and are often selective when it comes to who gets to see us, and when. Hope this sort of makes sense. I’m writing through half-closed eyes, desperate for sleep, but wanted to say thank you for being honest.

  • Devin Garlit moderator author
    7 months ago

    Thank you @Mererid! No one can have a positive attitude all the time, otherwise it’s simply lying to yourself!

  • Ahollmann22
    7 months ago

    Wow Devin. Excellent writing as always. You capture the moments that I was feeling almost everyday. Somehow, I am still able to work. And there are so many times, I find a small corner, sit down and catch my own breath and rest so my body can make until the end of the day. Your writing inspires me to keep moving and fighting through the muck of MS! Great piece !

  • Devin Garlit moderator author
    7 months ago

    Thank you @Ahollmann22, happy to hear it!

  • Kathryn Holland
    7 months ago

    Devin, thank you so much for ranting and then sharing. So many of my days are just like this. I’m going to share this with my Facebook friends and family as I usually do to try to educate and spread the word. It was truly nice to hear that someone else has days like these. Thank you thank you thank you.

  • Devin Garlit moderator author
    7 months ago

    Thank you @Kathryn Holland, it’s always helpful to know you aren’t alone!

  • messeeone
    7 months ago

    Consider yourself “understood,” Devin. I even teared up a little reading the last paragraph because the last few days my “grand plans” have been replaced by struggling to do “simple things” and then finally giving up and doing some “active resting” instead. ( I believe you are familiar with the term–you invented it!) Some days are trickier than others, and they can still take us off guard and knock us down. At least we’re in good company!

  • Devin Garlit moderator author
    7 months ago

    Thank you @messeeone, very much appreciate you taking the time to read and share your thoughts!

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