I wake up swinging

The hardest and most difficult question for me to answer isn’t “If you’re rowing your canoe up a telephone pole, and all four wheels fall off, how many pancakes does it take to shingle a doghouse?” Although that seems to be a senseless and impossible question to answer, it’s still nowhere near as difficult of a question to respond to as being asked “Are you feeling better?”

I don’t know if people realize how difficult being asked such a question is for someone living with a chronic progressive illness. Am I feeling better than what? How I was feeling yesterday? Last year? Five minutes ago?

It’s not like I have the flu or a broken arm which mend over a short period of time. Multiple Sclerosis is a chronic disease. That means it doesn’t go away just because I went to bed early, had a ten minute break at work, took two aspirin this morning, or deny that it exists.

MS is something I will have for the rest of my life. It causes physical limitations, weakness, debilitating fatigue, numbness, paralysis, constant emotional strain, cognitive problems and a whole host of other difficulties.

I am sick with a disease that, to this day, has no known cure and will only get worse as time passes. You see, my immune system is literally on a revenge attack against my own body causing chaos in my Central Nervous System. It is attacking the nerves throughout my brain and spine and eating them like they are hot wings at a tailgate party. It affects every part of who I am.

As of today, this disease is forever a part of my life no matter what you read from Dr. Google, hear from a friend or learn from a brochure at a doctor’s office. My hope is that one day things will change for the better and MS will become a thing of the past. And each day scientist grow closer to finding ways to ease the pain we all face. But today wasn’t that day.

I have moments when both the physical and emotional pain in my life are overwhelming. But I also have times when I can manage everything quite well as I hide my struggle behind a smile. I have been known to cry, scream and even question my own existence especially when I find myself being judged, stared at in public, and losing friendships all because of how MS is affecting me, my emotional makeup and my everyday functionality.

But regardless of everything I am going through…no matter what happens or how down I may feel…I keep fighting. Today I woke up in a war that seems to have no end. Imagine a life lived under continual sniper fire, surrounded by hidden landmines ready to explode with each step you take and hand grenades being thrown at you for no apparent reason.

Sometimes I am weak and can’t even find the strength or ability to think past simply knowing my name. Times when MS wins as it sucker punches me in the gut. But even on my worst days when I feel so utterly useless and weak, I refuse to quit.

I may never “feel better” like so many people want me to, but this battle isn’t over no matter what the day brings and neither is my life. I am simply living it differently than most people. It’s a new day and I have a new chance to make a difference in this world. Each one of us do. Use today to show the world what real strength is and what true warriors look like. You are my hero. You are an MS Warrior!

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.

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

    I could say 15 but it doesn’t matter now lol. What a great question for being totally weird.
    ‘Are you better?’ seems to be a cliche of the world like ‘hoe are you?’ and I think a suitable reply would be ‘all right and walk off in the best possible way.
    These ‘up and down’ days appear to be common for us so I guess it’s our new normality. No one can know what we are going through until they’ve been through the same thing constantly over a lifetime.
    Like I wrote before with the change in my memories I feel as though I have been in a dream for the last 15yrs and just woken up to a nightmare so I have got some things to sort out.

  2. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Got my big girl panties and pad on and ready to fight another day. Be well.

  3. Suzanne Williams
    Suzanne Williams says:

    Thank you for perfectly articulating what I feel. I can’t find the words, or feel that anyone would want to hear what I go through. I don’t want to be a spectacle, or give ammunition to those who would want to look at me as “less than”. Usually, I just smile, and be quiet, but it’s a lot to bear alone.

  4. Mary
    Mary says:

    It’s eerie how similar our thoughts are. You just express them so much better than I do. So many times I forward your post to family and friends so they will know how I feel. thank you for helping me to communicate my feelings.

    Your comparison to sniper fire and landmines couldn’t be anymore perfect .

  5. Kimberly
    Kimberly says:

    Awesome post! I love how you word your feelings and use such wonderful humorous anologys. You are my daily inspiration!👍 Thanks for being a blessing in my life. Hope today is a “good” day for you.

  6. Ginger Grobe-Herbert says:

    You are such a fighter and an inspiration! Thank you! I only have RRMS and I feel like I shouldn’t gripe at all when I hear the stories of you people with PPMS! You are a trooper!

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