LeeAnne’s Experiences With MS and Weather Changes
Over my almost 24 long years of dealing with multiple sclerosis (MS), I have found that many different things effect my daily well-being. One of the largest, and sometimes overwhelming, things I deal with on a daily basis is something I have absolutely no control over: the weather.
Most people look forward to upcoming events, but for me they can be frightening. I never know what to expect, because even silly things like the weather can seriously effect how my body will react. For example, say it’s a beautiful sunny day. Sounds perfect, doesn’t it? But it’s not necessarily a good thing for me because my body has difficulty regulating temperature. A warm summer’s day can truly be a painful experience — even the slightest temperature change can cause me discomfort.
I have a very vivid memory of the day we moved into our first home. It was summer and it was warm, but not unbearable to the average person. Multiply that heat by at least 200 percent, if not more, and that’s what it felt like to me. To cope I sat in front of a floor fan with cold wet washcloths on my legs, which made it somewhat bearable. I probably looked ridiculous but I really didn’t care. I was just trying to survive the heat sensitivity, no matter what it took.
The type of MS I have causes me to have a burning sensation from the upper torso down 24/7, and adding heat to that it is not a good thing. When it’s 70 degrees outside, I feel like it’s 80 degrees or higher. The makeup my loving husband put on for me feels like it’s going to melt off my face. On top of that, certain medications I take make being in the sunshine unbearable and my skin can easily burn.
Where does all this leave me? Uncomfortable.
Spring is the most enjoyable season for me. The weather is usually nice — not too hot and not too cold. I love to get out and at least go for a ride. Seeing the new growth on the trees, flowers and new grass on the hills I find to be very refreshing. I love the sound of birds singing and breathing fresh, clean air.
The arrival of fall brings a mixture of emotions. Unfortunately my husband goes back to work with the start of the school year, so I ready myself for the upcoming feelings of dealing with another school year of isolation. I try to find joy in various things. I love seeing the leaves go through a color change — it makes it easy to find joy in the simple things.
But it’s not just warm and sunny weather that can be a challenge. If it’s cold out, I have a similar problem only in reverse. Moderately cold temperatures can seem freezing to me, and no matter how warmly I dress I’m easily chilled. My hands feel like ice. I try to wear gloves, but that presents a whole different problem — because of weakness in my hands it’s difficult to put them on.
During the winter months I also find myself being more and more isolated. Between the cold and the rain it becomes difficult, if not impossible, for me to get out and about. I either get drenched in the rain or freeze if it’s really cold. In hopes of avoiding getting ill I often stay away from crowds, even more so during the winter.
My husband is always on alert, frequently checking me for temperature changes in general awareness. He constantly asks me, “Are you okay?” followed by numerous other questions. He fires question after question at me without giving me a chance to respond.
Because of all of this I find it difficult to look forward to any upcoming event. Even getting dressed to go anywhere is a huge undertaking. Because I’m bedridden my husband has to put me into different positions to get me dressed, and he’s usually overheated by the time I’m dressed. He never complains, but I feel badly every time he has to go through it. I’ve learned to turn on the overhead ceiling fan to try to keep him cool during the long process. As soon as he’s finished, I turn it off, because I’m usually freezing by the time he’s done.
As always, I try to remain positive. It isn’t always easy but I’m determined to keep a smile on my face no matter what happens.