A Holiday Reminder For Our Friends And Family

A Holiday Reminder For Our Friends And Family

We are now in the thick of what most consider the holiday season. This time of year can be especially rough for people suffering from a chronic illness like MS. You will no doubt see a number of holiday survival guides come out focused on this topic, offering tips on how to deal with the problems that arise from traveling, being in crowds, suffering from sensory overload, fighting fatigue, dealing with depression, stress, etc. Most of us with an illness already know how tough this time of year can be, but I am hoping to reach others with this piece: friends and family that may be affected by our absence or early departure from holiday celebrations. I want to remind our friends and family that this can be a difficult time for everyone, but those with an illness in particular. I want to explain why this is in hopes of increasing understanding and lessening hurt feelings this time of year.

My body simply isn’t dependable

During American Thanksgiving (I know I’ve got readers in other countries who don’t celebrate that, just wanted to acknowledge that!) I stayed home and had people over with my roommate. A sort of “friendsgiving”, if you will. I’d love to be with my family, but the travel is too much for me. Even on my home turf, which makes a big difference, I ended up bailing out right after dinner. My body had too much excitement I guess, my legs were racked with burning pain and weakness. I was barely able to stand, so my roommate helped me to bed and continued to entertain our guests without me. I didn’t even have a chance to explain to everyone what happened, and I felt so bad about that. These things happen to me with no warning. I will be fine one minute and bad the next. My body simply isn’t dependable, that’s the nature of this disease.

The MS basics: why are we so unpredictable?

I again want to give the best example that I can think of of what happens with MS: your phone charging cord. MS causes our own immune system to eat away the insulation around our nerves (this insulation is known as myelin). Our immune system thinks our nervous system is a foreign invader that it must stop. As this insulation is eaten away, signals from our brain traveling along our damaged nerves don’t always get where they are going or don’t get there fast enough. My brain says, “lift my foot”, but the signal doesn’t get there or doesn’t get there fast enough and I fall. This can happen throughout the brain. It can mess with everything from moving parts of our body to even causing mood swings, or pain. Our brain and nervous system are the parts that are damaged; that’s a pretty big deal, it can lead to issues just about anywhere. Our body’s ability to communicate with itself is compromised. Think of these nerves in our body as frayed phone charging cords, the kind where you have to set the phone and cord just right to keep it charging. The slightest bump to the cord or phone might make it stop charging. The same is true in MS, the slightest bump, or trigger, might cause our body to stop working correctly. Generally, the longer we’ve had the disease, the more of these “frayed cords” we have in our body. These bumps or triggers can be anything from stress, to changes in temperature, being exposed to another illness, even overdoing it and being too active. Any kind of stimulus to your body can be a trigger and cause things to go out of whack (think of all the stimuli that come with the holidays).

It sucks for everyone

I assure you we feel bad about all of this. Not only physically, but emotionally. Having to cancel on or leave our friends and family early takes a heavy toll on us. We don’t want these things to happen. We’d much rather be surrounded by our friends and family; it simply isn’t possible all of the time. We recognize it’s not easy for you either. You love us, you plan around us, you want us to be there. It’s understandable that you get upset when we have to bail. I hope though,that you can focus that anger or sadness at the disease and not us. We aren’t being “flaky”, we aren’t uninterested, we don’t dislike you, our bodies just fail us at the wrong moments. When we can’t be there, it feels like insult to injury, but it doesn’t feel good for you either, and we know that. Everybody hurts. When a friend or family member gets MS, in a way, the whole group of friends or family gets it. Multiple Sclerosis affects exponentially more people than the number of diagnosed, that’s something we all need to remember. Particularly this time of year.

Keep your friends and family in your heart

A lot of this is stuff you know, but this time of year, when emotions and stress are very high, it’s important to bring it up. I hope folks will read this and it will at least lessen, as much as is possible, some of the hurt feelings that will no doubt occur this holiday season. I urge you to think of that phone charging cable and remember how precarious charging with it can be. I also want to encourage people to explore non-traditional methods of communication. We live in a world of Skype, Facetime, Facebook Live, and various methods of being somewhere without actually being there. It’s not the same, but it can be extremely helpful. Lastly, I want to remind you to keep your friends and family in your heart and to remember that even if we aren’t together physically, it doesn’t mean we aren’t there.

Thanks for reading and I hope your holidays are swell!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • tfs
    1 year ago

    Happy New Year, Devin. Lots of ups and downs – and a supermoon to send the year on its way. I love reading your posts. I thought I did really well – and that’s the vote that is going to have to count. I have a candle lit and a book.

  • Toledo34287
    1 year ago

    You are always spot on Devin. Thanks

  • x7acfg
    1 year ago

    Just reading something I could relate to. Not being able to make plans or leaving early from events. It is frustrating! Fatigued all the time. I want to scream sometimes. But for the most part, I suck it up. Ms Tommye

  • LuvMyDog
    1 year ago

    Glad the “holiday” is over for another year, I find it to be so miserable and depressing. Not because I’m sitting around with a lot of people or screaming kids, because I’m not about to do that, but the “holidays” merely remind me of the past, my beloved pets who have passed and old friends as well. I spent Christmas day shoveling and snow blowing my long driveway and sidewalk and the driveway and sidewalk of my 95 year old neighbor. I do these things because I have no help and neither does he. I guess there are (???) neighborhoods where people help their neighbors, or at least they did many years back but apparently, not anymore. It was exhausting work to say the least for an old lady with MS and I don’t know how much longer I’ll be able to do such hard work. But, nobody cares, it’s every selfish jerk for themselves, just makes me hate people more and more.

  • New to me
    1 year ago

    Your article is sadly spot on! Stress is high during the holidays which causes nerves to be on high alert, rarely have I not had a relapse afterwards, grandkids are gifts but hours of screaming and ruckus is pure pain for my nerves.., I am an expert at making excuses for my early departures… I find even my wife of many years doesn’t understand the extent of my sudden weakness and gives me the “eye”… hang in there people

  • LuvMyDog
    1 year ago

    Sorry, but your wife sounds like a selfish and uncompassionate person.

  • Poll