Article by Wendy McCance
I have had a lot of communication with readers who were very interested to read about managing day to day life with fibromyalgia. Every person who has this autoimmune disease seems to have different challenges. Some people manage fairly well and can deal with the aches, pain, and fatigue because it isn’t severe. Other people are basically out of commission because of the level of symptoms they experience. My symptoms tend to have high and low moments.
Each day I am stiff and sore when I wake up. Sometimes I feel like I am cemented to my bed and the effort of rolling over and picking myself out of bed is difficult and painful. I am unable to live a fast paced life because it would knock me off my feet. As long as I have some down time each day and don’t over schedule myself with too many activities, I manage fairly decently. I can’t sit for hours on end (too painful as everything stiffens up and aches). The same is true for standing on my feet for too long. Shopping trips work well when they are under two hours.
My biggest challenge recently has been the heat. The longer I have had fibromyalgia the worse my sensitivity to heat has become. This is one area I am still trying to figure out how best to manage. I have had days where if I’m in the water, I do pretty well as long as I don’t spend too many hours outside. Other times if it is really hot out, just sitting on my porch for a small amount of time makes me feel extremely achy and sore.
I went to the beach over the weekend with my family. I hadn’t been to the beach in a few years and felt we were all over do for some fun in the sun. We took our paddle boards, a frisbee and a huge amount of food and met up with some friends who had brought their kayaks for the day.
It was a nice day in the upper 80’s but there was not much shade in sight. Even the area we would be grilling some food had very limited shade. The water was the warmest I can remember ever experiencing. I knew to get some sunscreen on right away and start drinking liquids. We spent most of our time in the water having fun on the paddle boards and throwing a frisbee around. I made sure to have a water bottle in my hands at all times and ended up drinking 3 bottles in a 2 hour period.
Right around the time the guys started getting the food ready to put on the grill, I became extremely dizzy and nauseous. I sat down on a blanket, drank some more water and had some fruit. I only felt worse and knew my time in the sun had come to an end. Everyone was great about the situation which I was so relieved about. I felt so bad that I was cutting everyone’s fun short. We hadn’t even been at the beach for 3 hours. Thankfully my husband’s parents live around the corner and we were able to extend the good time over there.
My in-laws have a pool and a grill. The kids were thrilled to continue swimming and the guys were happy to cook up some food. I got into the pool to cool down when we got over there. The pool water was nice and cool and helped shake off some of the heat I was experiencing. After I dunked myself in the pool, I spent the rest of the time in the shade. The kids had plans in the evening so we were only at the in-laws for about an hour and a half.
That night I got really sick. I felt like I had a bad case of the flu. The bathroom became my best friend and I camped out there for most of the night. The next morning I was running a fever and spent the day in bed. I did a lot of sleeping and drank buckets of water.
Now it’s two days later and I am still recuperating. I love summer and being active in the great outdoors. As I’m finding out though, long periods of time in the sun are not for me. I have had past experiences with the heat and my bodies reaction to it, but this was by far the worst experience yet. My body just can’t tolerate the heat the way it used to.
For anyone who has any illness that limits their time enjoying the sunshine, I feel for you. I have always enjoyed family bonding time in the summer months. Biking, swimming, picnics, hikes, camping, canoeing, fishing and the list goes on have been great moments I have shared with my family. I know I don’t have to give a lot of it up, but I definitely have to find ways to make it work. Have you had any experience like this which was related to an illness? Do you have any advice on how you managed to deal with it?
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