We live in a messed up world

We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. Sure they have a way of ruining even a good day, but hidden in the chaos are little pockets of smiles. Hang onto those smiles because they are what help get you through the difficulties.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also wiping up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with multiple sclerosis. What makes people think they’re the experts at living with a chronic illness? If I choose to follow a certain diet, something different than you… am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as multiple sclerosis, because we aren’t. It’s just that each of us deals with the mess it causes differently.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. Be unique, be crazy, make a mess, try new things, make mistakes and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.

MS Gets on My NervesMS WarriorMS Superhero  

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.

21 replies
  1. Millicent Bundick
    Millicent Bundick says:

    If I had known so many neurologists…diagnosed..waiting for the experts to cure me…not one ?? Not my problem. Attitude is neutral..not nice for others to act like you just pop over to Wal-Mart to get your meds…

  2. Ahavah Stars
    Ahavah Stars says:

    Hi one of my co-worker’s son, 17YO got diagnosed this week with MS. Love to give her a few FB groups to join for her and her son. Thank you so much for sharing your true life, please feel free to IM too. Blessings of love and joy to you also your followers.

  3. Michelle Price
    Michelle Price says:

    I don’t take meds and since stopping 7 years ago I was fine. Now starting to go backwards, but these things happen. It was my choice and I’m happy I did it. Quality over quantity worked for years. Do what you do

  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Messy can be fun. I am a bit like you Penelope I like to clean up as I go and my son is a bit like your brother and can make a mess scrambling eggs but still making a good taste.
    It was quite interesting on our recent holiday, how different places had different ways of dealing with disabled people. Some were great while others lacked the means to contaminate with us. But it was great to be able to meet these and get over these struggles and carry on with the trip.

  5. Della Smalley
    Della Smalley says:

    Unless a person has MS then heck no they don’t know what we go through every single day.And each case n person is different.All we can do is fight n be MS Warriors

  6. Patty Solis
    Patty Solis says:

    I think this is true with all chronic diseases. Patients need and should be supported regarding their own personal advocacy. Dr.’s, friends, family, strangers, nurses etc. want to tell a person what is best. However, a person is the one who knows their own self best and are their own best advocate.

  7. Monica Schamberger
    Monica Schamberger says:

    Every one has to do what they think is best for them. I wish there was a “cure” for this disease, but there is not. I have a lot of bad side effects from “drugs,” so I choose not to medicate with them. With that in mind and the fact that the Drs. can not “guarantee” any good results from them. I can not make that decision for you, just for me.

    • Monica Schamberger
      Monica Schamberger says:

      My Neuro did mri s and had enough for the diagnosis, but still wanted a lumbar puncture. He pushed hard for one too. He tried to reassure me that He would do the procedure, but I still said no. It wasn’t needed, as he already has enough for the diagnosis. He kind of kept ‘whining’ about it. I’m not a human pin cushion, or a guinea pig. It’s My body, My decision. The medication suggested was $ 30,000 a year. Really??!!? Just No.

  8. Kevin McPherson
    Kevin McPherson says:

    Thank you Penelope for expressing what most of us feel because we know our MS isn’t your MS, or anyone else’s. As each person is unique, so is our version of MS. But meddlers don’t care, nor do they want to hear that they are clueless

  9. Stephen
    Stephen says:

    And every day, there’s a new mess! What gets to me is when I’ve been diligent in “cleaning as I go,” only to look behind me to see things undone again.

  10. Christie Sproba
    Christie Sproba says:

    Thank you for your continuous positive thoughts. I enjoy reading your blogs. It provides me with a “smile” I am do often needing.

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