Living in the beautiful state of Maine, I’ve experienced the beautiful four seasons for most of my life. Summers in Maine are short, so enjoyment of all that is outdoors must be packed in at every opportunity. Fall is beautiful with the foliage that takes your breath away. Winter snow is gorgeous when it first falls and it allows one to experience even more of the great outdoors that Maine has to offer, be it ice fishing, snowmobiling, skiing, snowboarding or my personal favorite, snowshoeing. When the layers of dirty snow just start to bother us Mainers, it suddenly starts to melt and things bloom again. Spring is my favorite as it reminds me each and every year that despite the end of an icy and cold winter, the earth is reborn and beautiful again. However, struggling with multiple autoimmune diseases gives me a whole different perspective on the seasons.
My summers with LEMS are manageable in Maine, as long as I am able to take breaks from the heat in air conditioning or swimming in a cold Maine lake. LEMS, like other neurological conditions, gets worse when heat is not relieved because heat slows down the processing of information from the nerves, even more than the disease has already caused. Trying to ease my electrical bill, I took out my air conditioners at what appeared to be the end of summer this past September, Labor Day Weekend, only to be rewarded with a full-blown LEMS flare when we had a couple of weeks of high temps and high humidity despite it being September. My numbness was intense, and one side of my face was drooping due to the nerves and muscles not communicating properly. An emergency room visit per orders of my neurologist and two MRIs later, it was determined that none of my symptoms were from multiple sclerosis, but were simply from LEMS, which mimics MS in so many ways, including the response to heat. Needless to say, the air conditioners will never be taken out before mid-November again!
Now that we are in the midst of fall, my LEMS symptoms have eased to a manageable level. However, with the dropping barometric pressure that accompanies the incoming colder weather, my ankylosing spondylitis and psoriatic arthritis have flared. I’m back taking my prescription NSAIDs, which I try to avoid as much as I can due to the harm they can cause to my liver and kidneys. The numbness that accompanies LEMS has now been replaced by the pain of multiple types of inflammatory arthritis. With pain comes pain management in the amount of rest I take, how much exercise I’m able to do and trying as many natural pain remedies as possible to not add too many more meds to my large cocktail of meds.
With the wind chills of November, I get reminded that winter is around the corner. Winter completely exaggerates my pain levels, especially in my back where I have a Harrington rod fused between my T4 and L3 vertebra. At 13 years old, I had a 54-degree angle curve in my spine that was caused by scoliosis. The amount of twisting and pulling the curvature caused to my heart and lungs required an intensive surgery followed by six months in a body cast. I was happy to be out of the pain the curvature had caused, but 35 years later, arthritis, ankylosing spondylitis and scar tissue from the surgery cause intense pain in the deep of winter. On some days I call it “breath-stopping” pain. I stay narcotic free to treat the pain as I want to live my life as fully as I possibly can, even if that means some days I don’t leave my recliner and heating pad. My back is the best predictor of incoming snowstorms!
Thankfully, winter doesn’t stay forever. With the melting of the snow and warmer temperatures of spring, I start to feel like a normal person again. I’m able to get outdoors and enjoy the fresh air. Walking out the kinks of winter is soul-renewing. Symptom-wise, I do pretty well, as long as I’m able to avoid the flu that tends to spread rapidly this time of year. Anyone who has any autoimmune disorders knows the flu can cause your autoimmune disease to flare. It’s not pretty when that happens to me and I can end up homebound for weeks. Now that I am no longer working full-time, I am able to avoid the flu if I’m careful. I do not get the flu shot as for me, it makes me instantly sick. I prevent it by staying clear of large gatherings of people. That’s no problem because, at this time of year, I’d rather be outside enjoying all that Maine has to offer.
I used to only think of the seasons with the exterior changes in the world around me. However, as an autoimmune warrior, I now know my interior changes will accompany what is going on outside. There is no perfect climate for all autoimmune diseases. The benefit of one climate to one of my autoimmune diseases will cause flares for other autoimmune diseases. For me, this means enjoying what I can during each season in Maine. The perfect climate for me would be about 74 degrees with no barometric changes, ever. Until that perfect climate is found, experiencing all four seasons in Maine give me breaks from either the pain of my inflammatory arthritis or the numbness of LEMS, during which I do what I can to enjoy all that Maine has to offer.
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This story was first published by Dawn on The Mighty.