Canceled Plans… Again

canceled-plansBy Penelope Conway

Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling. In the summer we would plan hiking trips through the mountains and in the winter we would go skiing. When MS became a part of the picture, those nights out and trips dwindled. Eventually I wasn’t even being invited out anymore, they would just go without me. I wanted to scream at the top of my lungs, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once MS becomes a part of your life. People will either stand by you and help hold you up when you are at your weakest or they will walk away. If they choose to walk away, let them. You don’t need anyone in your life pulling you down. MS is already doing a pretty good job of that already.

I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything become so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.

One thing I have learned over time is that MS is not a disease you can keep to yourself. We try though… don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.

Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving, parties don’t cooperate with our MS limitations, and depression has this sneaky little way of creeping into our lives.

It’s amazing the things we have to consider when receiving an invitation. Is the location accessible? Will the wheels on my walker or wheelchair leave wintry slush tracks on someone’s nice carpet? Will my body play nice? Will I be able to manage the crowds and traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will fatigue hit hard keeping me from being a part of the fun? Will people understand my decision to go home early or that I had to cancel plans last minute? Will they even invite me in the first place?

Real friends get it, though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?

I know it’s not always easy to do, but be determined to fill the days ahead with the warmth of a few close friends. It really does brighten the gloomy winter days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even Skype with someone you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.

From one friend to another: do your best to find joy in the wintry cold mix and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. 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.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Leah says:

    So true Penelope. I will have to cancel my Xmas eve plans with my in-laws this year as they’re expecting more guests for their dinner buffet this time. I believe there will be about 50 guests in total; needless to say, I can’t afford to wait in line to use either of their bathrooms…when I need to go, it’s crucial! Likewise, this amount of people really does my head in…way too much stimulation with chatter and noise levels. So, it will be a quiet Eve this year. My husband is fine with my decision, but that doesn’t mean to say I feel any better that he’s going to miss out on the festivities. In fact, I feel horrible about the whole situation. I told him he should go regardless of my plan to stay at home but he said that he’d be just as happy to stay in with me. I think I’ll take you up on your idea to order a pizza and watch a good movie with popcorn. Happy & Healthy Holidays!

    • Penelope says:

      I understand Leah. You have a wonderful husband to do that with you. Tell him I said so. 🙂 He’s a keeper. Enjoy your time together and eat some pizza for me. xoxo

  • Priscilla says:

    -P-
    Great post and so true! Many of us can relate, but what I’ve realized is it’s not the quantity of friends anymore, it’s the quality of friends I now have in my life 🙂! Miss our talks! Thanks for comforting and encouraging all of us who sometimes think we’re alone in this MS journey 🙂.

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