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.
The impact of our illness on friends and family
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 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 nerves are like frayed cords
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).
The heavy emotional toll of cancelling plans
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.
MS impacts the whole family
When we can’t be there, it feels like an 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.
Non-traditional ways we can be together
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!
Do you ever experience MS bloat?