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Mornings with MS: Was I Hit by a Bus?

As the first wisps of the morning sunlight begin to feather through the shades on my bedroom window, I am already very much awake. I am awake, forced from my slumber, not by an alarm, or my faithful dog (he prefers to sleep in), not by any choice of my own, but by my body. A body, that after decades of living with Multiple Sclerosis, wakes me up with pain. Burning, searing pain, as well as aches and spasms, all making it nearly impossible to fall back into a slumber. While not an everyday occurrence, more days than not, I wake up with my body feeling like I’ve been hit by a bus. My morning punishment, as I call it, makes starting the day extremely difficult.

The pains of the morning

Everyone gets some aches and pains as they get older, as the body has gone through the wear and tear of life; however, this is different than that. I normally wake with some sort of burning in my legs, as if they are on fire from the inside out. The rest of my body often experiences a dull pain, that I describe as that painful sensation you get after you’ve been out in the freezing cold for an extended period of time, when you’ve thawed out, but now all the formerly cold parts just hurt. My arms and legs often experience spasticity, when this happens, if the muscles are not involuntarily convulsing, then they are stiff, hard as rocks and immovable. Not only does all of this have a tendency to rouse me from my slumber, but it makes getting comfortable and trying to fall back asleep impossible.

Mornings aren’t pleasant

Prematurely being yanked from sleep by my pain often leaves me without an appropriate amount of sleep; combined with the fatigue that MS casts over me, the period of time after I wake up is rarely very productive. I may have been jolted from sleep, but that doesn’t mean I’m coherent. I don’t awake bright eyed and bushy tailed, despite being a big-time morning person in my past life. It seems unfathomable that I was once a person that was at the gym by 5AM and then the first person in the office. The thing is, even though that really wasn’t all that long ago, it seems like a fairytale to me now.

I wake up feeling beat up

Many days, I wake up feeling beat up. It’s never one isolated issue, my legs may be on fire, but one of my arms is also spasming, the rest of my body feels sore and stepped on, all while I feel encased in the concrete of MS-related fatigue. I often tell my roommate that it feels like I’ve fallen down a mountain and hit every rock on the way down. Needless to say, It takes a lot for me to pull it together in the morning.

Keep going

Even though I regularly wake up in rough shape, I can usually pull it together and have a decent day. I find that sticking to a routine is extremely critical to me in the mornings. Not trying to rush anything is also important. I now start most mornings at a snail’s pace, which is far from the way I once began my days. At times, that can be frustrating, but learning to accept that life is a little different has been the key for me to keep going. I don’t have a fool proof tip to not feeling so beat up each morning (despite trying many, many options), but I’ve learned that the most important thing, is to adapt to it and not beat myself up even more because my life has changed.

Thanks for reading!

Devin

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Comments

  • ss46sh
    6 months ago

    THE PAIN WILL GO AWAY
    Bruises, sprains, cuts, and concussions are injuries I experienced participating in athletic competitions. The injuries brought “temporary” pain. Initially painful, the effects diminished shortly. In July, 1985 a burning, tingling, and numbness riveted down my neck and right arm. “Whiplash” I first thought. Erratic starts, stops, and turns from my Driver Education Student Drivers must have pinched a nerve. The feelings are similar to “stingers” occurring during my football days. I figure the pain will go away.
    In August, Driver Education completed, the burning continues. My right leg is now having symptoms. Unfamiliar with prolonged pain I see a chiropractor. The manipulations and adjustments did nothing to ease pain. I now wonder if the pain will go away.
    In September, while brushing my teeth, a spark of pain shoots down the center of my back. Talking to co-workers a few recommended I try acupuncture. See a Doctor, not me. The needles and music was relaxing. The pain level reduced some pain. However, when I arrive home the symptoms return. I now question the cause of this pain.
    In October there is now numbness and tingling on the bottoms of my feet. I stay mentally strong yet my body fails to “get better”. Daily fatigue, unlike that after a long day at work, becomes common. It is difficult to fall asleep. My teaching and coaching duties leave me no energy at home. I need to find out about this pain.
    In November, while accompanying my wife to a pre-natal visit, I ask the doctor about my condition. Taking a small rubber hammer he taps my Achilles tendon and says, “The reflexive response is low.” He adds, “How aggressive do you want to pursue this issue?” I reply, “The pain is tolerable so nothing right now.” He suggests a neurologist. I decline the referral. I now hope the pain will go away.
    In December the pain intensifies. A new tightness and squeezing surrounds my torso. One week later I am on a neurologists’ table. A series of tests are inconclusive. He schedules an MRI. I may be close to the cause of the pain.
    In January 1986 my wife and I arrive in Portland for my MRI. It is scheduled for 11:30 PM. (Very few MRI machines are available in 1986) The whirling and pounding for twenty long minutes will provide the answer. The neurologist reviews the results. They reveal nothing. One final neurological test remains. I schedule a spinal tap in two weeks. My wife turns her head as the needle enters my spine. The sample is forwarded for analysis. I will find the answer to my pain.
    On February 12th, 1986, seven months since “whiplash”, our phone rings. It is the neurologist. He tells me the test is positive for Multiple Sclerosis. I ask for treatment options. He says,”If the pain gets too great come to my office for a shot.” I hang up and tell my wife. Back at school I research MS. I develop a game plan. I will fight MS like I fight any opponent. I will not let MS win.
    Today, while most of you wake up each morning eager to meet the challenges of your day, I wake up hoping I can still walk to the shower. I did not know then, but I know after 33 years,” The Pain Will Never Go Away! ”

  • ss46sh
    6 months ago

    I truly think most of us with MS wake up with some degree of pain. I too wake with a burning and pain in my legs. Everyday I shift my body to the side of my bed and stand up. Walking to the shower is my wake-up call. As long as I can walk and shower my day has begun. Routine is important to me as well. Feed cat, get paper out front, pour cereal and eat breakfast. While reading the paper and then doing the suduko and the boggle my day has moved onto the important stuff. I read some in my book and try to write something for my weekly sports column in our local paper. I have been and will continue to be a morning person. Commercial fishing when I was young formed a love for the quietness of the morning. My energy level is good until the afternoon so most of my activity I try to complete by early afternoon. I hope you continue to move even with the pain and burn. Moving is certainly better than the alternative.

  • Devin Garlit moderator author
    6 months ago

    Thanks so much for sharing you experience ss46sh , it’s very much appreciated!

  • maxie
    6 months ago

    Thanks Devin. I totally get it, especially about the pain in the leg from the “inside out”. I could never quite describe the sensation but that’s it!! When I get that, it is usually at 5:00AM, much too early for me to wake up for the day. I find taking 2 Advil helps me tremendously. I know it is a very simple solution but I find after taking the 2 advil, I can fall back asleep easily for at least 2 – 3 more hours. Give it a try (as long as you can take anti inflammatory drugs.

  • Devin Garlit moderator author
    6 months ago

    Thanks so much @maxie! I love hearing when folks share what works for them, gives everyone who comes to read the article so many more options!

  • marjo
    6 months ago

    Your writing is excellent Devin. Your vivid description of what it is like to wake up every morning with ms resonated with me. People just don’t get it, especially not being able to stay in bed to sleep, even when I’m utterly exhausted. I often hear just go to bed earlier. It is so hard to explain why I can only stay in bed a certain number of hours before the pain is unbearable. Friends and family try to relate with their aches and pains. I know they don’t get it. Even though I’m sorry you’ve experienced this kind of pain, thanks for writing about it. It brings me comfort to know that I’m not alone. Especially when I begin to doubt myself and feel like I’m making a big deal out of something that maybe could be solved with someone’s overly simplistic solution. It’s good to know I’m not crazy.

  • Devin Garlit moderator author
    6 months ago

    Thanks you @marjo, so few (if any) people can understand what it’s like if they don’t experience it. Thanks for chiming in with your experience!

  • michael honeycutt
    6 months ago

    Hey Devin, I know exactly what you’re talking about! The sore, stiff, frozen sensations can make you wonder. I once had the dubious honor of actually falling down a mountain, hitting a few rocks along the way, and I can honestly say that you are dead on the money. Every morning is another bounce downhill. Keep going man!

  • Devin Garlit moderator author
    6 months ago

    Thanks so much @michael honeycutt, appreciate that confirmation!!

  • Lifeisnotfair
    7 months ago

    Devin; almost all of your posts are about things that I am experiencing as well. I can identify with almost everything that you talk about and you always hit the nail right on the head!

  • Devin Garlit moderator author
    6 months ago

    Thank you @Lifeisnotfair, I hate to hear that, but I hope you take some comfort in knowing you are not alone!

  • Julie
    6 months ago

    Once getting up at 4 am and working a 12 hour day, I can identify with this. I not only have to keep a morning routine, but most of my day also has to be kept to a routine. I find that if I don’t, something important will be forgotten. Frustration!

    I do find that evening shoots me with a jolt of energy which is when I save most of my work for. Of course, this means I wake in the morning feeling like that same bus ran into me. A vicious cycle.

  • Kim Dolce moderator
    7 months ago

    Devin, love those two metaphors that describe your pain: the sensation of thawing out after being frozen (I totally get that one) and falling down a mountain and hitting every rock along the way (yepper on that one, too.) I don’t love that you hurt–only that your descriptions of it are often brilliant. Of course we all know that it is better to write good than to feel good 😉 –Kim

  • Devin Garlit moderator author
    7 months ago

    Thanks so much Kim! Really appreciate you saying that, means a lot!

  • wendismith
    7 months ago

    Sometimes I feel like you share my brain! Thanks for helping me feel a little less alone.

  • Devin Garlit moderator author
    7 months ago

    Thank you @wendismith!

  • sueaceuk
    7 months ago

    Me too.

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