How to Survive the End of the Year When You Have MS

Jessie Ace avatar

by Jessie Ace |

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The end of the year is incredibly difficult. We already have to put up with more than others because of our MS

In addition to that, the weather changes, the clocks turn back, and there is less sunlight, meaning vitamin D is in short supply unless we opt for supplements. All of these changes can exacerbate symptoms such as pain, fatigue, and cognitive problems. 

This time of year also sticks us into more encounters with people who don’t understand our illness. Despite the pandemic, there are far more social interactions than usual, including Zoom-hosted or physically distanced parties, special meals to celebrate the holidays, and gatherings with family we may not have seen in years. This can cause some serious sensory overload and have a severe impact on our mental health and MS symptoms. 

It is exhausting to be around people who are unfamiliar with MS, explain it to them, and relive our diagnosis over and over. Because we see so many people, we often hear that classic line: “I’m tired, too.”

I have considered creating and handing out a special pamphlet called “Things I Am Tired of Explaining” instead. 

In addition, the spread of cold and flu germs is widespread, and those of us with MS and compromised immune systems inevitably catch something. I think I’ve caught at least a cold every winter except one.

Apart from explaining a million times over why my tired is different from your tired, the most challenging part is that I look healthy, and people forget I’m ill. Family and friends are often surprised when I don’t want another alcoholic drink or when I start falling asleep at 9:30 p.m. Many people try to guilt us into things at this time of year, too. They say, “Oh, come on, just one more. It’s Christmas!” or “Stop being a party pooper and join in. It’s Thanksgiving!”

Explaining to a small child why Auntie Jess has to stop playing princesses and lie down for a moment never goes well. I don’t have children yet, so I haven’t had to figure out how to explain MS to kids. Knowing myself, I would probably write and illustrate a children’s book showcasing a unique character that acts differently as a way to explain MS to children. (If any publishers are reading this and think that’s a good idea, please get in touch!)

For now, I tell my niece I’m too tired because it’s easier. Sometimes my niece understands and respects this far more than adults do. How do you explain your MS to children?

Is there a way to make this whole thing easier? It’s important to be as transparent as possible and remember that people don’t know any better most of the time. It’s easy to get annoyed at them for not understanding, but unless we keep telling them, how will they ever understand? Don’t get me wrong, it’s super frustrating and we shouldn’t have to put up with it, but we do. 

How do you manage expectations from family and friends at the end of the year? Let me know in the comments below!

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

David Wynsen avatar

David Wynsen

I am an M.S. survivor! I am 70 yrs old and was stricken with M.S. when I was 29 yrs. old. My legs are weak and I need a walker to get around. Bummer. But that's enough complaining. I am married to an amazing woman (she has kept me around for 50 yrs) and has given me two AMAZING children -- daughters. The girls and their families are here in our home several times/wk! (Free food!)

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Jessie Ace avatar

Jessie Ace

You are a survivor! Keep going strong David, nothing can stop you #StayENabled - Jessie

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David A. Wynsen avatar

David A. Wynsen

M.S. is more of a life-changer than most non-MSers realize. It affects mood, thinking, personality, sexuality, friendships, marriage, and the list goes on and on. And please note that I am NOT complaining; complaining does NO good -- it merely annoys others and can give them reason to avoid you! My advice (if anyone cares to hear it) is to accept your limitations and move forward as best you can. The vast majority of people are understanding and WANT to help -- but they may not know how to help! If they are curious and want to help then tell them how they might help. Be honest. The vast, vast majority of people are sincere in their desire to be helpful.

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Jessie Ace avatar

Jessie Ace

It really is more of a life-changer than people realize and it's very difficult especially at this time of year to handle that. Your advice is exactly what I would say. Have a great day David #StayENabled - Jessie

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Gail Sacalas avatar

Gail Sacalas

This article made me cry. Why would leave such a down message?

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Jessie Ace avatar

Jessie Ace

Hi Gail, so sorry to hear this article made you cry, please know that was never my intention. I try to keep my column upbeat and positive where possible and this is sometimes difficult to do, especially through this year. At the time of writing this article, I was experiencing a difficult time which I can now see expressed through my writing. Going forward my articles will be back to my usual standard of positivity. I hope you are ok and didn't cause too much distress. #StayENabled - Jessie

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