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Getting Comfortable… or Not

Getting Comfortable… or Not

It’s a typical night, where not much is going on, and I’ve settled in to queue up some Netflix with my faithful dog.  My pup is my shadow, always by my side, so those that know us might be surprised that he is not sitting with me or even laying on me, but rather on the other side of my “L” shaped couch.  As faithful and loving as my dog is, he’s also very smart. He knows that even when I go to the couch to crash and chill, I will be faced with what feels like constant movement, as I keep repositioning myself and struggle to find some semblance of comfort (instead of having to constantly move himself, he decides to sprawl out on the larger side of the couch like the majestic beast he is). Getting comfortable has become increasingly difficult as I deal with the daily pain and spasticity due to Multiple Sclerosis.

The sedentary life

When many people think of MS, I think they picture the sedentary side of things. Laying down, sitting, maybe in a wheelchair, having difficulty getting around anywhere. All of that is common for a lot of people, and common for me too. However, what people don’t realize is that even if we are laying or sitting, that doesn’t mean it feels good. It doesn’t mean we are comfortable. Yes, I’m saying that even trying to rest isn’t easy at times. Laying on the couch or in bed may look and sound relaxing, but trying doing that with legs that feel like they are on fire. Or try kicking back for a quiet evening, and having the muscles in your arm begin to uncontrollably spasm. Instead of it being restful, it actually becomes quite frustrating, particularly as we are often plagued by fatigue and desperately need the rest.

Inability to get comfortable

In fact, this inability to get comfortable, no doubt, has an impact on that fatigue. I’ve discussed “painsomnia” before, but helpful rest doesn’t always have to be at bedtime. There are many other moments where we try to recharge our batteries (or find a few more spoons, if you enjoy that analogy) and simply can’t. This inability to get good rest because of our symptoms helps to perpetuate this vicious cycle to the point where we’re not sure if we can’t rest because our symptoms are so bad or our symptoms are so bad because we can’t get enough rest. It goes on and on, and I’m sure is responsible for some people’s irritability along the way.

The discomfort of pain and spasms

I typically begin to degrade throughout the day, all of my symptoms often become worse as I go about my business, which is why my example in the beginning had to do with me settling in at night. It’s fun to note that at night, my dog will stay on one side of the couch and give me space, but in the morning, he’ll often either be on my lap, or pressed right next to me. Through experience, he knows the difference between my body in the morning and the evening. This inability to get comfortable can happen anywhere though. Knowing some about MS, my friends will often offer me a seat when we are out. However, because I know I will need to stretch my legs or move them some in hopes of lessening the pain (which in no way works), I often prefer to stand (try to anyway), or rather, stand and lean against something, because I know the pain and spasms won’t allow me to stay still (a bad leg spasm while in the seated position is pretty awful). When I am at home on the couch, I am constantly shifting between laying and sitting, and in various directions.

Constant struggle to get comfortable

Bottom line, life with MS for me seems like a constant struggle to get comfortable. It does happen, but it’s rare. This is all sort of the side effect of the pain and spasticity I go through and it’s something that, unless you live with someone with MS, you might not realize. The image of someone with MS sitting peacefully still and constantly resting isn’t always an accurate one. There are a lot of days when I just wish I could get comfortable, I feel like if I could, maybe it’d lessen some of my other symptoms. Anyway, I hope I’ve opened some eyes of those who think that all we do is rest. I hope you can see that even when we are resting, it can be far from restful.

Thanks for reading!

Devin

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Comments

  • Kritty
    9 months ago

    Hi Devin. I haven’t been on this site in awhile. I opened my email and saw you had a new article. I love reading your posts, they are as usual, right on point. My biggest obstacle is fatigue and that constant dizzy feeling like when you are on a boat swaying back and forth. Although I don’t get those spasms (not yet thank God) however, I do have that constant pain in my feet that you described of pins and needles accompanied by that on fire feeling, burning, tingling and numbness. Also my legs ache pretty much all the time. It is uncomfortable to say the least and at times hard to sit still. I also need help to fall asleep. I take 5 mg of the generic Valium with an OTC 50 mg of generic Sominex every night. I still don’t get a full night of sleep regardless. I wish my family and friends understood how I feel but I also gave up trying a long time ago. There’s an old saying I love to refer to, “You can lead a horse to the water but you can’t make them drink it.” LOL
    Again, thanks for sharing. It helps to read articles like yours just to reaffirm I’m not crazy and imagining these symptoms. Keep posting them. Have an awesome day!

  • Devin Garlit moderator author
    9 months ago

    Thanks so much Kritty! I am always interested in hearing how people try to combat these situations. Like you, I absolutely feel some comfort in everyone stepping forward and saying “that happens to me too”.

  • SJ
    9 months ago

    It’s funny that this is the first article I clicked on today – I didn’t go to work today because my hug has been bad enough since yesterday afternoon that I’ve had little sleep and my dogs did the same thing all night.
    All I want is to find a comfortable position today, too…
    Thanks for this, Devin, somehow there’s some comfort in knowing that you’re not suffering alone. Or maybe misery just loves company LOL

  • Devin Garlit moderator author
    9 months ago

    Thank you SJ, I know exactly how you feel! Having one of those days myself!

  • SJ
    9 months ago

    My dogs are happy because they get to spend the day taking turns cuddling up with me on my recliner. The bad part is I end up torn trying to decide if I should take enough tramadol or whatever to get some sleep. If I sleep all day, I’ll probably toss and turn all night again and be in pain and maybe call in to work which I really don’t want to do.
    Don’t know why this is a hard decision… am I the only person that struggles with what feels like what should be common sense?

  • Loopyone
    9 months ago

    I totally get it. I get so fidgety and constantly trying to get comfortable.

  • Moshe
    9 months ago

    Good article. I so relate to being unable to get comfortable. Very often I try to ignore it. I toss and turn for hours, take a shower, take a Tramadol. Finally I get 3 hours sleep, then up at 6 to start a new day. Maybe a nap later, maybe not. Yes, people do think I am always resting. I don’t try to explain, it’s futile. Only someone with MS knows what I’m talking about.

  • Devin Garlit moderator author
    9 months ago

    Thank you Moshe! I hear you, it definitely seems futile to try to explain it to others. Resting, for us, just isn’t always restful. That’s tough for other people to grasp.

  • Shelley D.
    9 months ago

    Another great article, Devin, thank you! I can only remember being totally comfortable twice in the past several years. Both times I actually wondered if I had died! Lol-(sort of).

  • Devin Garlit moderator author
    9 months ago

    Thank you Shelley D.! It’s amazing how we adapt to our situation and forget what feeling good is like, happens to me too!

  • Heitz
    9 months ago

    Zeus73. YOU nailed it. Devin does have a talent for expressing himself. I read something you write Deving and I go…Oh yeah, that’s it. I then steal your observation or description to use for myself!!
    I too have an awful time talking about myself and my MS. Angst is polite. I am effing angry a lot.
    I do stand often. I can deal with my feet feeling like they are standing on rocks. My butt, oh yes it does, not so much. I am grateful for my dog. She seems to know something and is generous with her compassion and giving me space as well. I would not have said any of this without you two. Thanks.

  • Devin Garlit moderator author
    9 months ago

    Thank so much Heitz! Very appreciated, I’m right there with you!

  • gmc
    9 months ago

    My dog seems to sense my altered abilities as well. It so nice to have a faithful, unquestioning friend that also loves unconditionally.

  • Devin Garlit moderator author
    9 months ago

    Thanks gmc! It’s amazing just how much dogs seem to understand the difficulties we have! I simply must share my story about my previous pup since we are discussing dogs: https://multiplesclerosis.net/living-with-ms/penny-my-biggest-supporter-in-my-fight/

  • zeus73
    9 months ago

    You are SO good at this sharing thing. So accurate, concise, and your style though always informational, is also simultaneously comforting. You help me see the smaller picture when I try to sweepingly generalize as I try to avoid focusing on what I can’t fix. In the process, I cheat myself of comfort.

    It is very hard for me to let on my private angst about the many ways this disease messed with my body, my psyche, my life. I’m told I don’t talk about it enough. That’s for the benefit of others. I don’t know if it’s a lonely disease or I want to be alone because of it. I do know that I experience a few moments of anonymous calm when I read your articles. And I often send them to my children to help explain what I don’t.

  • Devin Garlit moderator author
    9 months ago

    Thank you so much for the kind words zeus73! I do think it’s a lonely disease. As they say, you don’t “get” MS until you get MS. One of main goals with what I write isn’t to fix people’s problems (we’re all so different anyway) but to say, hey, I know what you are going through, I can’t really fix it, but I’m hear with you, I know exactly how you feel, and you most certainly aren’t alone. I’ve always felt some comfort in knowing that others understand what I’m going through. I also always hope that what I write can help our friends and family understand a little more of what we go through, because at the end of the day, just knowing folks understand and “get it” means a world to me and I think many others with this disease.

  • spuds
    9 months ago

    Oh my, can I relate to this article. I’ve actually had family say “you can come right? You’ve been resting all day.”
    What I hate most are the painful spasms. I get NO rest. Thank you for the understanding I felt in this article. I am not alone.

  • Devin Garlit moderator author
    9 months ago

    Thank so much spuds! You most certainly are not alone! So many of us deal with those very same spasms!

  • MargieF50
    9 months ago

    Pain is the elephant in the living room for people who have M.S. A large minority of people who have M.S. also have pain in all varieties. I have experienced pain with M.S. for decades, from laminating shooting pain like lightning, to itching skin and muscle spasms. There are consequences for myself and my family, to living with neurogenesis pain. There are consequences to not talking about the pain that people with M.S. experience. One neurologist did not believe me and took away the anticonvulsant meds that controlled my pain! Thank you for your article, Devin!

  • Devin Garlit moderator author
    9 months ago

    Thank you MargieF50! Pain is such a common but misunderstood symptom of MS, while it’s an accepted symptom now, it wasn’t always that way. It’s a pretty good way to determine if a doctor is up to speed on the latest information, if they dismiss pain, they likely aren’t! By the way,I try to cover pain issues a lot in order to help raise awarness: https://multiplesclerosis.net/living-with-ms/the-torture-that-is-chronic-pain/

  • @masbrautigam
    10 months ago

    Great article. But also very true. I’m never comfortable come to think of it and at night definitely not. I often take a sleeping pill to fall asleep because of my pain.

  • Devin Garlit moderator author
    9 months ago

    Thanks so much mascha! The evening is always the worse for me as well. I admit, I too occasionally will take something like Benadryl to allow myself to get some sleep. I think that’s probably a more common practice than a lot of people admit.

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