Cancelled plans

Most days I wake up able to find some bit of humor in the things happening in my life. I can laugh about my weak legs, muscle spasms, inability to remember things, lack of coordination, and bathroom mishaps. Granted, some are those things can be embarrassing and bring me to tears, but I choose to laugh anyway. Laughter has this wonderful ability of helping to lessen the pain.

I can handle the limitations MS throws my way, but what I have a difficult time with is people’s lack of understanding when it comes to how hard things actually are for me. I think people see those of us with MS as the same person we were prior to a diagnosis because, after all, we appear to have nothing wrong with us from the outside. If there were some way to turn our bodies inside out so people could see the amount of destruction we are living with, it might change their view about our struggle.

Some of the hardest things for me are facing an unlimited lack of energy, realizing my inability to do all the thing I used to do, and canceling plans. Most people just don’t seem to get it either. It’s not like I spend my entire day trying to come up with an excuse to skip out on dinner plans or working out a way to choose my PJs over dressing up for an afternoon out. I hate missing all the fun happening in the world around me.

Last minute changes to plans are not something I enjoy doing, but they happen…often! The people who value me understand, all the others…well, I consider them my fair-weather friends.

My circle of friends have become really small, but at least I know who my real friends are. They are the few that are still standing with me even when I’m at my worst and weakest. They are the ones that choose to look past my limitations, unexpected symptom changes and intense fatigue. They love me regardless and always…whether I’m the life of the party or the party pooper.

And you know, through it all, I do my best to keep a smile. It is the only thing that gets me through those unbearable moments and unexpected changes.

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.

50 replies
  1. Debbie Dossi Haley says:

    Why do people expect a person to look sick just to believe that they are sick. My mom had Lupus and she looked beautiful! But the disease took her life just 2 weeks after her 41st birthday. She tried not to get too down with all the symptoms, but some days were harder than others. Thank you for this very well communicated article!

  2. Erin Haley says:

    This brought tears to my eyes because it’s so true. “It’s not like I spend my entire day trying to come up with an excuse to skip out on dinner plans or working out a way to choose my PJs over dressing up for an afternoon out. I hate missing all the fun happening in the world around me.”

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

    That’s nice you have dinner dates to cancel. I haven’t been invited to any in the last decade so I haven’t needed to go through that. I have a few friends that treat me ok, but there is a lot of uneducated people out there who don’t want to know what we have to deal with.

  4. Bonnie Burkley says:

    I have thought of that many times when people are insistent on me doing something, “to take my mind off IT!” ie “you need to get out more,” “it will last only 2hrs., you must go!”….. You get it….especially this time of year. Blurry eyes, bad balance, spasms,etc. That’s when I want to turn inside out and show 36yrs. of MS!!

  5. Val Hanna says:

    The reason for the cross face is cos even though I’m stuck in bed as legs etc are striking everyone says sure you’re looking so well. I send you a big ((((( hug )))))) from my oh so well bed

  6. Sharon Cullers McChrystal
    Sharon Cullers McChrystal says:

    The gift of MS was getting rid of all my “vampire” friends. The true caring ones stayed available and understand that IF I was feeling up to it would be there as planned. As usual you are an incredible mind reader!😊Helps one stay sane and not feel so alone in all this.

  7. Toni Mishler says:

    Very well said. It is also a struggle to make people understand everyone’s battle is different. Being compared to others no matter what they deal with does not help. It may be a mystery to others but a battle we fight

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