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 just trying to sleep. 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 that I could have another 10 hours to try and 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 far away distant planet.

I discovered that Multiple Sclerosis messes with people’s thinking. That it doesn’t fit so neatly in their box of understanding. They reject my reality because they can’t physically see the disease that I’m living with and the destruction taking place inside my body.

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 happen, but each day is a chance to open people’s eyes.

You know, even though times gets 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 going to make it and in the process, you will help expand people’s understanding of life with a chronic disease. You will be a part of bringing awareness to the world.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

71 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    This is why I stopped going to the MS Society; there’s a lot of sick people there. I’ like most here nee a positive response from others to help move on through life. I think if I didn’t have the people around that help then I might need them. but not before. I’m still the same inside as I was 15 years ago and that hasn’t stopped me trying to be the best I can do. With my memories fully restored I feel better than before. I can now say I did something and give a time for it whereas before I just knew I had done something but not know when etc.So now I realize I have been livng in a ‘Fogged Brain’ time and didn’t know it. This is what I mean when I say I have woken up to nightmare.

  2. Kelli Meduna says:

    Some how your post always come to me at the right time. Sometimes I smile through the tears but still smiling. Some days It’s the only thing I can do to get through the day . Thank you for sharing. It helps knowing that I’m not alone.

  3. Lali Sorrentino says:

    I LOVE YOU Tess Brenneise Sorrentino..YOU ARE A STRONG PERSON …YOUR SPIRIT HELPS YOUR BODY…YOU WILL BE OK… BE HAPPY ALWAYS…THE PAIN SOONER OR LATER WILL GO AWAY EVEN IF YOU NEED TO TAKE MEDICINE..ITS OK…I LOVE YOU HIJITA.

  4. Lisa
    Lisa says:

    I’m just too tired to smile. But I wear one anyway because I refuse to lose, and if I don’t smile, I lose and MS has won.

    Your blog posts encourage me so much. I go back and re-read them often, every day. I’m so glad I found your website. You help me to remember to smile, even when I have no strength left to.

  5. Sandy
    Sandy says:

    Please seek alternative methods of treatment; there are many. Get out of the conventional bubble and think out of the box.
    I had cancer; know exactly what I am talking about. I would be dead at this moment–living with the consequences of crappy treatment. There is always a solution…..ALWAYS!! Have faith in yourself. God bless you! I am literally sending all of you a virtual hug!

  6. Bree Lornie says:

    I loose my smile at times due to fatigue and pain. Pain is a huge thing for me just to stand some days is a chore i hope people start to understand the struggles we go through each day and not keep asking the whats wrong question.

  7. Lara Hayes
    Lara Hayes says:

    You’ve done it again Penelope – this is all so true. I’m normally in bed by 7pm and am so fatigued by then I struggle to get both legs on the bed. Then come the spasms and the neuralgia, along with trips to the bathroom, then it’s morning and time to start all over again. But on goes the smile and I wrestle with my ‘coping’ clothes and face the new day. I’m still breathing, what can I achieve today?

  8. Stephen Harris says:

    true, and right on. but when i think of sharing things like this, i can hear the eye-rolling and disgusted signing right thru the interwebs. when people ask “how are you,” this us exactly what they don’t want to hear.

  9. Jo Kiser says:

    I hate it sometimes… I try to smile but sometimes it just takes too much energy and I am simply happy that I’m not hiding in bed in a dark room.

  10. Russell Baker says:

    Penelope, your posts are coming to me at just the right time. I can’t even blame it on MS (although I see an MS specialist lol).
    I won’t give up smiling; I just some times wish people would lighten up on me, and realize how hard I am working just to be this imperfect.

    • Stephanie Murdock says:

      I’ve learned the hard way not to depend on the people around you to see your struggle and your fight. Celebrate your accomplishments in your own way but never expect it to be enough for the people around you.

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