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The Difficulty of Days Off

Typically, when the winter approaches and the holiday season begins to loom large, many people like me will often write about the difficulties that people with Multiple Sclerosis can encounter during the festive time of the year. The thing is, while it’s easy to single out the Thanksgiving, Christmas, New Year period as one that is challenging, many of us experience difficulty any time there is something non-routine. Any day that involves a majority of people being off or altering their normal activities can present some unique challenges to those with chronic illness. While I desperately try not to sound like a party pooper, let me talk about some of these potential pitfalls.

Disruption of routine

One of the stranger things that has affected me over my years is my absolute need to have routine. While I hate to say it, long gone are the days of me spontaneously picking up and doing something unexpected. Keeping a routine, doing the same things the same way, even frequenting the same places, gives me comfort. It also helps me deal with nagging memory and cognitive issues, allowing my body to run on a sort of autopilot. When this can’t happen, I start to struggle, mentally and physically. I actually struggle a bit on weekends because of this, when my roommate is often off and doing things at times I’m not accustomed to.

Crowds and loud noises

Let’s face it, many people like to gather on holidays. For many people with MS, the crowds and loud noises that come with these gatherings can be extremely disruptive. Sensory overload is a common issue for many with the disease, whether they realize it or not. Even if you are in a room with friends and family, our bodies can become overwhelmed. Crowds can bring on anxiety and stress, which then makes some of symptoms suddenly rise to the top. I’ve left many a gathering simply because my body went from OK to unwell in just seconds.

Challenging activities

When folks are off, they tend to want to do something that, honestly, can be difficult for someone like me. Summer holidays like Memorial Day, the 4th of July, Labor Day, etc. can create some challenging scenarios for someone MS. Going to the beach or laying out by a pool (where temperatures can be a nightmare and even dangerous to someone with MS), attending fireworks (see above on sensory overload), and even going to a water park (where mobility issues can suddenly become a problem) are some examples of potentially difficult situations for someone with MS. People love to do various activities when they are off, which is great and understandable, but can also leave many people with MS stuck on the sideline.

Loneliness

All of these issues then lead to a greater problem, loneliness. While the winter holidays can seem overwhelming to me, the summer days off feel especially alienating. Weather alone is often enough to keep me stuck inside or at the very least covered in cooling equipment. That means I’m less likely to get out of the house and therefore have decreased social time. That has a massive effect on my state of mind and is no doubt a big reason why depression is such a common issue for those with MS. I know a lot of people with our disease that simply think of the summer as a time to hibernate, a time when we simply accept that we will be on our own. I do this to an extent as well, but that doesn’t mean it’s easy. People often associate the winter holidays as a time when feelings of depression and sadness are high, I have a feeling that, for those with MS, the summer provides the exact same issue.

Thanks so much for reading and always feel free to share!

Devin

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