My body is weak

People don’t seem to understand how weak and exhausted my body is at every moment of every day. I must wear this smile on my face really well. It definitely covers up the daily struggle of living with a chronic illness. Sometimes I think my smile is the only thing that’s keeping me together; that if it should fall off, I’d fall apart too. Somehow I get through my day with my smile in place…exhausted, weary and worn out, but still smiling.

For me, I’m in bed by 7 PM each night and I have to say, by that time I’m so weak that it’s a struggle to transfer from my wheelchair to the bed. You’d think getting to bed early would be a good thing, right?! But no matter how early I go to bed, I never get true productive sleep due to pain, muscle spasms, breathing difficulties and an overactive nighttime brain.

I seem to drift off for a few hours at a time and by morning, I’m exhausted. I think I get a workout in the middle of the night. I’m not fighting MS only while I’m awake, but while I’m sleeping too. Who wouldn’t be exhausted fighting non-stop without a break? I can’t remember a time I woke up in the morning feeling refreshed and ready to conquer the day. Those days are long gone.

Morning comes and I wish there was a way to stop time so I could have another 10 hours to actually rest. But time never stops, the day keeps going and I have to keep going with it.

It used to irritate me when healthy people would talk about feeling rested and how I just need to follow their magic routine and I’d wake up rested too. I’d try to explain that my body doesn’t work that way but few actually understood that concept. Many would look at me as if I was an alien from some distant planet in a galaxy far, far away. After all, it works for them. I must be doing something wrong.

I discovered that multiple sclerosis messes with people’s thinking. That it doesn’t fit so neatly into their limited box of understanding. They reject my reality because they can’t physically see the disease that I’m living with and the destruction that’s taking place inside my body. Trust me, if I could turn my body inside out and you could see this monster in action, you’d understand.

I’m thankful for those who get it. If my talking about a life with MS increases the awareness of this disease in just one person’s life, then I’ve accomplished something great. My dream is for the awareness of multiple sclerosis to become as wide spread as cancer awareness is. I don’t know how long it will take for that to actually happen, but each day is a chance to open people’s eyes.

You know, even though times get tough, you will always see me smiling. It’s important to find something in this messy world we are living in that makes your heart happy, that makes you smile. At this very moment in your life, no matter how hard things may be or how much you may be hurting, pause and find that one thing that makes you smile.

Hold onto that thought, person, thing, or belief, then wipe your tears, take a deep breath, and smile your way through. Yes, your body is weak, but you are so much stronger than you think yourself to be. 

You are an MS warrior and us MS warriors are stronger than any body builder, olympic athlete or prize fighter ever could be even on our weakest days. You aren’t weak. You are MS strong!

11 replies
  1. Veronica Loomis
    Veronica Loomis says:

    How do i find you on facebook. I was diagnosed with MS in 2001. I’ve move to Florida to get away from the winter weather. I’ve been doing pretty good but the day before yesterday my legs felt rubbery then today I can hardly walk . I am scared and woder if your exercise program may help me. Thank you for being there for all of us.

  2. Roland R Clarke
    Roland R Clarke says:

    You always remind me that we are not alone, Penelope – warriors in a fight to educate others. Thank you for saying what I feel.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope I can relate to you as I have had that problem a while and got sick of it. I got my doctor to obtained Normison for sleeping and it worked. But i developed an annoying spasm so I got baclofen and that also worked. So at nights I take 5 x Baclofen and 2 Normison and that gives me about 8 hours sleep. This may work for some but I know we are all similarly different so get it checked out and see if it all right for you. I am also aware the names may be different from country to country.

  4. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    I hope the spot on my shoulder that I have for you is comfortable. You are in my thoughts always. I steal a moment of rest when I can. The MS world we have been forced to live in is filled with many challenges. Knowing I will find you and your thoughts on my computer screen is like having a sincere hug and a great piece of chocolate. Oh, then there is coffee. All good things now and always. Wishing you peaceful ZZZZZZZZZZZZZZZZZ’s.

  5. Marlene
    Marlene says:

    Thank you for your thoughts on ms fatiigue. During my rrms, I wasn’t bothered so much by it, but now, with spms, it is relentless, and I resent non-ms people who say that they get tired, too. It’s also very discouraging to know that no treatments exist for spms, and the difficulty involved in getting medication to treat my fatigue doesn’t help. I wish you all the best in finding a solution to your problems with fatigue. For me, exercise can help as long as I don’t overdo it. Anyone who would like to try it can join my Multiple Sclerosis group on Facebook. 👧🙂

  6. Jan
    Jan says:

    No matter how many times I tell people that with MS I need to rest in the afternoons, they don’t get why? Even after explaining what MS really is, and what it does to one’s body, they still don’t get it or don’t want to understand or maybe don’t really care. I now just tell them to google MS and read about it. Then I go rest with my tea & chocolate!! I ❤️ all your posts!!! 😘

  7. KT
    KT says:

    You made a difference in my life and I thank you for that. Many times I am going through something and, I swear, it’s like you know to talk about that very thing. You have been a very uplifting and encouraging influence. I am grateful for you.

  8. Meeya
    Meeya says:

    Be assured, dear Penelope, that you have indeed achieved a lot… Not just by making us smile & carry on our fights.
    I have shared so many of your posts with friends who had difficulties understanding my MS struggles, and quite often, it really helped!😊
    You are my hero… 😍


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