Ho-Ho-No

Jamie Hughes avatar

by Jamie Hughes |

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Even when a major holiday isn’t scheduled in a calendar month, I’m a pretty busy lady. I work a full-time job that requires me to be present and “on” most of every day. I also have to deal with Atlanta traffic, which is physically and mentally exhausting. I’m a wife and mother to two boys, which is a job that comes with all the requisite calendar keeping, appointment scheduling, homework checking, laundry washing, meal prepping, and chauffeuring you’d expect. Add church activities, volunteering, freelance writing, and a few other activities to the list, and every hour of a week is pretty well spoken for before Sunday night rolls over and goes to sleep. I do all of this with multiple sclerosis, and with careful planning and a good bit of help, it works out.

And then comes Christmas. All the work above keeps on keeping on, but banquets, small group parties, gift buying and wrapping, decorating, and kids activities get piled on top of it. For the last three years, since my husband and I brought our kids into our home via foster care and adoption, I’ve been saying no to a lot of requests. After all, I became a mother overnight and have been operating on a pretty steep learning curve. Until recently, I felt justified in saying no to things because I had a “good” reason.

It’s the air quotes around that word that I want to talk about. What constitutes a “good” reason? And why do we feel obligated to justify saying no to things? This year, I’ve said “yes” to more than I have previously, and it’s starting to show. My time is precious (and mostly already accounted for), and anything added to the to-do list is coming out of a private stash usually reserved for rest or sleep.

I say, “Oh, it’s the holidays, just for a season. I don’t mind. I’m fine. I like helping. It’s important to make memories!” Each phrase is an excuse that women have made since the beginning of time to justify running ourselves ragged so our families and communities don’t feel too badly about it.

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I’ll just say it: MS is hard on March 14 and Aug. 1 and Oct. 25 and every other black-letter day on the calendar. And the ones from Thanksgiving to Christmas feel almost impossible. I don’t know about you, but I’m not interested in burning my proverbial Advent candle at both ends this year, so I’ve stopped saying “yes.” Anything already volunteered for will be completed, and I’ll do what I can to make sure the holiday is pleasant for my family. However, if the last few years (the ones where I felt permitted to say no) have taught me anything, it’s that the world won’t stop if my kids aren’t in the nativity play. If the cookies are store-bought rather than homemade. If I opt for a gift card for their teachers instead of thoughtful, wrapped presents. If the party isn’t attended. The world keeps on spinning no matter what. It doesn’t mean my head needs to be awhirl, too.

Multiple sclerosis is something many folks will never have to deal with and can never understand, so I don’t blame people when they judge my “no” harshly. I also don’t worry whether or not I’m “doing enough” because I know my limits and have to respect them. That’s the best gift I can give myself and the people I love. The same is true for you. So this December, say yes only when you want so that you can well and fully enjoy this blessed and holy season.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Rashmi Jose avatar

Rashmi Jose

....so true.

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Jamie Hughes avatar

Jamie Hughes

Word :)

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Tina avatar

Tina

Bless your strength of your control faith and your unselfish living heart. It takes a strong beautiful woman to put so much of your time and consideration for all you do, with also dealing with MS. I must be the weakest link to MS. It takes the life out of me just to be asked to go to the store with my husband. That's what makes me feel unworthy and waste of time hear on Earth and wounderfull husband of 30 years of marriage in a matter of months from now. I have been sick and tired of being sick and tired, just in these past 12 yrs. Just to have given up these past 4yrs. Today I was generously told after a major 3wks. of muscle contraction seizure type of orders, brain ? hurts that I caved into my my better half and told my Dr. ONLY for my husband that he was becoming more and more concerned. They did an MRI and call me the very next day and let me know I have Progressive MS. Don't know if I liked knowing what was finally had an actual diagnosis or if I was happiest not having what I was laughed at, belittled, passed from Neorologest to be laughed off to the next. I'm having trouble getting to my point (recognizing people don't want to take the time to care anymore what I want to say) but I just love your energy, strength and courage to go out and face this big cruel world. Stay strong for those who count on you for better or worse, that calls you hunny or mom, or simply just a reminder of being called a friend. I proud of you.

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Jamie Hughes avatar

Jamie Hughes

Tina, I have relapsing/remitting non-progressive MS, and it was caught at my first exacerbation. In many ways, I think both of those things have decided the course of my life. Yes, there are days when I literally have nothing left (happened this week, in fact), but there are other times when I feel as close to normal as could be imagined. And prayer---lots of prayer has made a difference.

I'm sorry your doctors brushed you off or passed you along. That's what this disease does. It hides, it tricks. It takes a good doctor who is patient and who cares about his/her patients. If you don't have one of those yet, go find one! If you're anywhere near the Atlanta area, we have two MS centers. One is the Multiple Sclerosis Center of Atlanta, and the other is part of the Shepherd Center. Both have excellent doctors who care deeply for their patients' welfare. Keep fighting--in body, spirit, and mind--for those who love you. They're worth it...and so are you!

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Tomas Nilsson avatar

Tomas Nilsson

We men have our special MS problems:
I used to be my familys (three adult boys) main breadwinner, but not anymore. I am happy to live in Sweden but my (recently retired) wife is getting shorttempered and I am afraid

I AM UNABLE TO RESPOND
Tomas Nilsson

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Jamie Hughes avatar

Jamie Hughes

Tomas, it can certainly be challenging when MS puts stress on us and our loved ones. Have you two been to counseling? I know that helped several of my friends and their spouses when chronic illness came into the picture. Also, finding ways to lighten the load helps. For instance, I have groceries delivered and have someone come clean our house. Those two things don't rest on me or my husband now, and it's been a huge help. Blessings on you and your family, my friend. It is challenging, but I pray some relief finds its way into your life.

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Erin avatar

Erin

It seems as though we all should know this already, but I need to see it in print and read (and reread) this many times.
I so enjoy Christmas, and my husband is like a kid and always wants to go all out every year. But the process has always hinged on me doing the bulk of things every year. Since the diagnosis, it's been a process of letting go - more like actually prying my fingers off of tasks. Now my step-daughter and my husband do the bulk of decorating. That hurt me at first, but now I see it for the blessing it is. They get some father-daughter time and get rest and a beautifully decorated home. Because I have such a fabulous husband, I have the blessing and luxury of choosing most of the tasks related to the holidays, knowing he'll fill in when it's necessary for most things.
Thank you for the gentle reminders. Have a blessed and warm Christmas.

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Jamie Hughes avatar

Jamie Hughes

Erin, that's EXACTLY what I meant. Letting the tasks go blesses us (and has the potential to bless others). What a great reminder. Thanks for sharing it! Hug that man of yours; he's a treasure. I have one too, and I don't know what I'd do without him. :) Merry Christmas to you both.

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Johan avatar

Johan

Happy Holidays Jamie. May you and yours be blessed and may you continue to shine strong.

JE

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Jamie Hughes avatar

Jamie Hughes

Thanks much, Johan. Happy holidays to you and yours as well.

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