I Just Want to Wake Up Feeling OK

When I was first diagnosed with Multiple Sclerosis (MS), I didn’t know anything about the disease or any other chronic illness for that matter. I tried very hard to educate myself from day one but it took me a while to truly understand what it meant to have Relapsing-Remitting MS. For the first little while, I thought it meant that I would have relatively short periods of time where I experienced weird symptoms (a relapse) but then after a few weeks it would all go away and I would be completely symptom-free (remission).

When will this be over?

Because I thought that, when I was going through my first relapse which robbed me of my crisp vision, caused weird sensations of pins and needles, numbness, pain, and also made it hard to walk among other things, all I remember thinking was, “When will this relapse be over?” I would go to bed each night hoping that when I woke up all my symptoms would be gone. That I would wake up and be totally fine.

Things would never go back to 100%

I wanted to wake up in the morning, open my eyes, and look around the house to see that everything was crystal clear again and upon crawling out of bed notice that my drop foot was gone as well as the pins and needles, the pain, and the numbness as if it had all just been a bad dream. I wanted to wake up and be able to declare that I was officially in remission but that obviously didn’t happen because that’s not really how it works. I eventually realized that recovery from an MS relapse was a much more gradual process and that over time things would never go back to 100%. Instead, more and more symptoms would stick around and become a permanent part of my life as I slowly developed more long-term disability over the years. That is just the course of the disease; I hate to say it, I hate to admit it, but that is the truth and I have since come to terms with that. More or less…

Gone are the days

I recently had a minor flare that caused a lot of my symptoms that I live with every single day to become more severe than usual. It made functioning throughout the day a lot more difficult (more so than usual because every day is a struggle in some way shape or form) and every morning, after I got out of the shower and brushed my teeth, I would already find myself thinking about how I just wanted it to be time for bed already. Now, I want to be clear here, like many other MSers, I’m always tired from the moment I wake up to the moment I go to bed at night. No amount of coffee and Ritalin can fully overpower my fatigue. Gone are the days that I wake up feeling fully rested and ready to conquer life. But like any other symptom, some days my fatigue is much worse than other days. So, anyway, all I am basically saying is that I was having a flare. Things were worse than usual. After a couple weeks of this, I was lying in bed one night trying to overcome my insomnia and fall asleep. As I tossed and turned I caught myself thinking, “I hope when I wake up I won’t be so dizzy or feel so terribly fatigued.”

Stuck in my dreams

When I woke up the next morning of course, nothing was different. I mean, I knew it wouldn’t be, I had learned that years ago, but I have just felt so burnt out lately so I couldn’t help but feel disappointed. I lied there for a while staring at the slowly spinning ceiling and I thought about the dream I had just woken up from. More specifically, I thought about how in my dreams, which are often extremely vivid, I don’t have MS and I can run, drive a car, ride a bike, or even smoothly navigate my high school wearing rollerblades for some reason. Then I wondered, was I so desperate to go to bed and fall for the night because life in my dreams is so much more enjoyable than life when I’m awake? Because my dreams offer me an escape from my MS? Then the thought crossed my mind that it would be nice to be stuck in my dreams permanently because in my dreams I would not have to deal with the miserable symptoms that are with me every second of every day.

Wake up feeling OK

But of course, that’s not what I want, not really. What I truly want is to spend the night deep in a relaxing dream and then to wake up in the morning and be in “remission.” The remission I incorrectly thought was a reality when I was first diagnosed with MS over 8 years ago. I want to wake up completely symptom-free and have the energy and motivation to be productive and conquer the day. To be my best self and enjoy life like any other 28-year-old. To not wake up and feel miserable before my feet even leave my bed and hit the floor. I honestly don’t feel like I’m asking for anything extreme or grandiose in life, I just want to wake up feeling OK.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • Hershey21
    2 months ago

    Oh Matt, I must read everyone of your articles! After the 1st TWO I feel a kindred spirit. The dreams!!! So often in rollerblades! LOL What’s up w/ that!! Ha ha

  • Matt Allen G author
    2 months ago

    lol I have no clue. I guess in high school I was into inline but not like in my dreams haha

  • Nonnie28
    2 months ago

    For the first year I used Ritalin I was relieved to feel relatively normal (as opposed to feeling like my body was made of green jello. Not so helpful anymore. I discovered Kratom a couple of years ago. A wonderful herbal supplement.

  • Matt Allen G author
    2 months ago

    Yeah, I just try to not take Ritalin (or similar meds) for as long as I can so I don’t build a tolerance. I tried Kratom (several strains) and it worked great the first time and then after that, it did nothing. Oh well,

  • ShelbyComito moderator
    2 months ago

    Thank you for sharing, @nonnie28. I’m so glad to hear that you’ve found something that works for you! Best, Shelby, MultipleSclerosis.net Team Member

  • Donna Steigleder moderator
    2 months ago

    Thanks, Matt, for sharing your story. My husband who has SPMS talks about waking from his dreams still running or swimming and being confusing at first when he realizes he can’t even turn over. Thanks for telling us about your dreams and I hope there will be medication soon to help you move better. Donna Steigleder multiplesclerosis.net moderator

  • Matt Allen G author
    2 months ago

    Thank you, I hope the very same for your husband, hopefully soon they will really give progressive forms of MS just as much attention as RRMS.

  • Hershey21
    2 months ago

    This made me think of the time I happily watched the movie AVITAR but when it came to the scene when he had legs again and moved his toes in the sand then spontainiously began to run, I was blindsided w/ overwhelming emotion. I completely lost it! Never have I so identified w/ the idea of actually running again. That is why for years and even now I find it too painful to allow myself to dream of a cure. I find it best to spend what little brainpower and energy I have to focus on literally putting one foot in front of the other and trying to navigate each day w/ some level of dignity and positivity!

  • Matt Allen G author
    2 months ago

    I totally understand what you are saying but me personally? The hope of it being POSSIBLE one day sometimes gets me motivated. But again, I totally get it.

  • ShelbyComito moderator
    2 months ago

    I remember that scene so vividly, @hershey21! That is such a powerful moment and perfect comparison. Thanks for sharing. We’re here for you and thinking of you. Best, Shelby, MultipleSclerosis.net Team Member

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