My Brain is Working, But My Body Doesn’t Want To
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As I sit here writing this, I’m struggling. It is difficult to even type, not because it’s hard emotionally, but because it seems so physically daunting. My arms and legs feel like they are made of concrete. I feel fatigued and exhausted. My body hurts, seemingly everywhere. It feels like I just climbed to the top of a mountain and then fell back down, hitting every rock I just scaled on the way down. I am not having an exacerbation, this is simply how I feel sometimes after battling MS for close to 18 years. The insult to injury at this moment, is that my mind, though slightly foggy, is very active. I have so much I want to do today, but the disconnect between the way my mind feels and the way my body feels is preventing that, and it’s driving me crazy.

This happens

As I said, this is a common situation for me, and I’m sure it’s also common for many who battle MS or similar diseases. I’ve spoken before about how my cognitive issues feel and how scary that can be. This is pretty scary and frustrating as well though. My mind has this get-up-and-go mentality to it right now, but physically, I can barely move my legs. My arms are propped on the desk and I’m typing with one hand. It’s not comfortable, but no position I get in will be comfortable right now. Everything is so heavy right now, my limbs especially. I feel like I somehow fell asleep on each of my arms and legs, I’ve got a tingling numbness in them that is similar to that. There is no shaking this off though.

I can never predict it

This kind of thing happens often, but I can never predict it. Sure, if I’m under a lot of stress, or if the weather fluctuated a bit, maybe I could have guessed it’d be a rough day. But many times, like today, there just isn’t any rhyme or reason. My body just doesn’t work the way I want it to. That’s most of us with MS, especially after having it for a long time. Those demyelinated sections in our nervous system simply won’t allow the signals to get through the right way all the time. That’s why there is such a rush to limit an exacerbation with something like steroids and why being on a disease modifying medication is so important. You want to limit those damaged areas because they eventually build up.

The best laid plans…

It’s not like I had grand aspirations for today. I wasn’t planning to climb an actual mountain or anything like that. I had simply hoped to catch up on some laundry, take my dog on a nice walk, and hopefully respond to some comments on my previous writings. I realize these things can seem minor and trivial to some, but that really would have been a big day for me. Depending on how the day was going, I was considering attempting something big, like taking a shower. That’ll have to wait now.

Prisoners

The fact that my mind isn’t nearly as foggy as it so often is when my body is feeling rough is extremely frustrating. I know, I should be happy to have my wits about me. Having my mind so active with my body like this really does make me feel like a prisoner in my own body though. It makes me worry about my future, and if it will be like some of the worst cases of MS I’ve seen. Cases like that of my grandfather and Annette Funicello, both of whom had MS steal many of their bodily functions but kept their thinking intact, leaving them imprisoned in their body, unable to move, unable to even communicate properly. That terrifies me because I’ve seen it up close. Being in that situation but still being fully aware is every bit what I think hell would be like.

So it’s not only the fact that I wanted to get some things done today. It’s not just a minor frustration. Days like this are extremely scary because they could very well be a glimpse into my future. A hellish future, at that. Our future is never set in stone though, and I remind myself of the medical advances we’ve had. I remember that we are lucky to have the medications that my grandfather and Annette did not have access to. I remember too that no one with MS follows the same path. Days like this make me appreciate the decent days even more, and they remind me to keep going.

Thanks for reading!

Devin

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37 comments on “My Brain is Working, But My Body Doesn’t Want To

  1. jackiej says:

    Wow, Devin, Thank You so very much.I was just asking myself, why am I still here and what for.Tired….

  2. Devin Garlit moderator author says:

    Thank you jackiej!

  3. Debbie says:

    WOW Devin! You took the words right out of my mouth. Thank you for sharing in this wonderful article just how I feel sometimes.
    Diagnosed in 1991. Keep writing for those of us who sometimes can’t finish a sentence.

  4. Devin Garlit moderator author says:

    Thank you Debbie, very much appreciate that!

  5. BuckeyeCurt says:

    Devin, I enjoy reading your articles and experiences. However, thanks to Tysabri, it seems like my body’s working better but my mind isn’t working.

  6. Devin Garlit moderator author says:

    Thank you BuckeyeCurt! Glad to hear at least something is working better!

  7. sparky8t4 says:

    Things I’ve found helpful include using an interface on a device that operates by voice, eg I prefer doing emails or communicating with almost anyone on my Samsung Android for the google speech to text function/keyboard. I also use the function for those moments where u know the word u want to write but cant remember how on earth to spell it!

  8. Devin Garlit moderator author says:

    Thank you sparky8t4! Appreciate you sharing some of what works for you!

  9. Thank you Devin. I was diagnosed with Ms in 1998. And have just recently started to experience some of what exactly you’re explaining. Thank you for sharing.

  10. Devin Garlit moderator author says:

    Thank you Jennifer! Appreciate you taking the time to say that!

  11. Kristi says:

    I love reading your posts Devin!

    There have been so many, especially this one, I feel like we are one. My mind and body issues you bring to pen and paper. I don’t think that’s what I was meaning…
    I just wanted to say thank you!

  12. Devin Garlit moderator author says:

    Thank you Kristi! It’s always nice to know I’m not alone. If there is one thing I’ve learned since I started writing, it’s that a lot of the issues I thought were just mine, are actually pretty common. Thanks so much for reading and taking the time to comment, it’s always appreciated!

  13. potter says:

    I am sorry that you are too exhausted too type, I know writing is your art and soul. I came down with the flu this week and I am just getting over a relapse. Lets just say there is some unspeakable messes when half your body is still numb. I wasn’t even able to take my Tecifidera for two days. I had two aunts that had MS before there was any treatment, one of my aunts was in assisted living by the time she was 32 and died of brain shrinkage at 50. If these anti medication people knew what could happen to them they might not be so anti medication. The day I was diagnosed I ask the neuro what medications were available. I hope you get to shower soon, I also need one but I am stuck with sponge baths for a while. Potter

  14. lcal says:

    I just was able to shower yesterday after 1 week. GROSS because of having a flu since Dec 28th. an of course now that thats finally better its dealing with this subsequent exacerbation
    I hope your flu is under control
    Lisa

  15. Devin Garlit moderator author says:

    So sorry to hear Potter, I am just getting over the flu myself, hence the delay in responding. The flu is no joke, especially for us.m Not sure I ever really experienced the full on flu like I just did. Take care!

  16. karieland75 says:

    First time here great article!! Thank you so much for sharing. I have such a hard time with my invisible symptoms and ANYONE around me understanding. No one gets how taking a shower is such an accomplishment!! My cognitive is getting really bad I am only 42 and so scared sometimes. and yes I try to appreciate the decent days too.

  17. tfs says:

    Again, Thanks. It’s a hard day today, and I relate.

  18. As others have said, Thank you for writing this. Thanks..

  19. Devin Garlit moderator author says:

    Thank you Thomas!

  20. I completely understand. I was diagnosed in mid July of 2017, but neurologist says based on the amount of lesions revealed via my brain MRI & the amount of ‘o’ bands in revealed in my spinal tap results, he believes I’ve actually had MS for quite some time. I am on Tecfidera which I take twice a day. I definable get the daily fatigue, all day but especially as the day drags on. I get the heavy legs, I wake up almost every morning with jarring hand & arm pain/numbness that sometimes will reoccur throughout the day. I always have a headache or some sort. Always have dry mouth it seems. I also get occasional all over body aches and pain. I also have cervical spinal stenosis so that makes pain in my neck and back a daily occurrence all on its own. I even get very short moments of blurred or double vision, thankfully they are quite brief. I struggle with speech too, especially if I am in a long winded, aggravated or emotional conversation – I may forget a word or slur my speech, that’s fairly common for me. Cognitively I don’t feel very sharp, I feel slower then I should be and it’s frustrating for sure. Exhausted physically and mentally. Every day is a winding road and for those of us with MS, it’s a long haul.

  21. sip1beer says:

    Your article made me sad. I’ve had MS for 30 years and am now using a scooter all the time. I went from invisible MS, to limp to cane to walker to scooter, but it took 20 years for that to happen. The harder MS beats up on people, the sadder their stories are. I spend a considerable amount of time trying to do what I can to improve the lives of others with this stupid disease. I volunteer daily, I’m a phone counselor, a support group leader, and a political activist. It’s amazing how doing all that I can helps me, even when I don’t feel like doing anything, which is a considerable amount of my life. I just do it. Give it a try, Devin. Good luck!

  22. tfs says:

    I like your handle sip 1 beer 🙂 I think I follow in your steps in terms of invisible MS to limp to … I just don’t want to think about it – waay to exhausting. Isolation kills so your strategy is reliable. Note to Devin – your writing is sor important and certainly a form of volunteer service. Kudos to you both.

  23. tee says:

    Thanks for writing this article..I can relate to just about.everything you wrote about, as if you know me personally..lol.. It’s a hard way to live but we have to make the best of it..laugh as much as possible..

  24. jn99 says:

    Thanks for putting it out there, Devin. Your posts help me feel less alone in the fear. Judith

  25. Emcstone says:

    I feel the same exact way with a few additional items. The fog is strong and doesn’t go away. The pain in my body never goes away. I am glad we have medications but I wish they worked better. I was dx in 2013 but really can remember things happening since I was in high school. Caught it late! I like your optimism! Thanks for the writing/article.

  26. Devin,

    I totally experience the same feeling! My brain goes and goes, but my body won’t even point and laugh at my brain – too much bother.

    Yesterday was a day where it just seemed gravity had an extra hold on me, and I was fortunate to spend most of the day sleeping on and off. Even then, my brain wanted to “do” or “accomplish,”

    I almost also terrified of being trapped in my body, needing to ask someone to scratch my nose, but being unable to. I have prayed that God will take me home before that happens.

    Thank you for sharing something that only other MSer’s would understand!

    Susan
    Had it since I was 17, not diagnosed ’til I was 41, completely disabled at 50

  27. Thank you for your story, Devin and I can certainly appreciate what you are going through! While everyone has a different story with MS, what is not different is how the human brain functions and can function in the case of brain injuries due to MS cerebral palsy, Parkinson’s disease, etc.

    The main thing is, if MS takes neural functions from your limbs, take them back. If one gives it enough willpower, the brain WILL “rewire” itself by finding another neural pathway way to get limbs to function. It’s called brain plasticity / neuroplasticity and all human beings have it throughout their entire lives. and a non-inflammatory diet to that equation and you’re set. Without ever taking medications for MS, I am proof the brain can reroute neural pathways and make new neural connections. Never give up or in to MS. Never surrender to it! Keep trying.

  28. Abby2014 says:

    Good for you for venting your frustrations! Sharing your experience is in itself a cathartic thing to do.. I once listened to an MS webinar and the speaker’s closing has always stuck with me so I will share it in the hopes it will mean something to you. Getting thru an exacerbation or just a regular frustration, one should feel good that they have conquered the frustration. Minutes later it is already history. Give yourself a pat on the back that you got thru that moment or day. YOU did it!

  29. ekowms says:

    Wow. Said so well. I was saying that to my husband last weekend. I just want to get this done. But my legs are not cooperating. The easiest things take twice as long. Lately I’ve been having more bad days then good. But every day I wakeup and do the best I can this day. I try hard not to dwell on what my future with this monster will be. Scared but doing my best to stay positive. I enjoy your articles you hit it on the nail every time.

  30. Great one that I truly relate to 100%! It helps me to forget about being physical for the day and just watch a good movie or read something and get lost in it. Always forge ahead, and yes, the bad days help me to appreciate the good days more. Here’s to hoping tomorrow is so much better!

  31. MisterD says:

    I know these feelings/sensations you describe all too well. Moments when the brain AND the body are both in the game don’t come as often as they used to.

  32. L Grah says:

    I am the same way. My body is hurting and my mind is going. I just have to be thankful for the day.
    Lisa

  33. Riya says:

    I forgot many things…

    Sometimes I think dat my memory power is very weak

  34. Riya says:

    Same here Devin

    I m also frustrated from this

  35. Monk says:

    I get scarred too when I watch the video of Annette Funicello. I was diagnosed in my mid-fifties and unfortunately DMTs don’t work very well at an older age.

    There is strong evidence that DMTs that are taken when a person is young and early diagnosed the chances of becoming severely disabled are significantly reduced. Young people, I know it’s frustrating taking a drug especially if you have to injected yourself with a needle but in my experience the pain of the needle is nothing compared to the disability.

    Wishing you all the best,
    Christine

  36. Devin Garlit moderator author says:

    Thank you Christine! So many people are against taking their medications these days, it’s sadly become a fad to be anti-medicine, anti-science. If more people could see that can happen when you don’t take DMTs, I think they’d change their tune. Here is a piece I’ve done on that: https://multiplesclerosis.net/living-with-ms/medicine-not-poison-war-science/

  37. Elements says:

    It isn’t everyday that a person experiences the same life as you.

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