Having Multiple Sclerosis in the Heat of a Pandemic
I have had MS for 17 years and my symptoms are stable, manageable and invisible to most. The COVID-19 pandemic has made me consider things differently.
The fatigue is overwhelming
First of all, I stayed home for over 2 months. After a trip to Philly that involved busses, restaurants, a concert and staying over at a relative’s house, I came home on Sunday, March 16. By Tuesday, things were starting to shut down. I can remember the details because it will be a long time before things will get back to where I can do a trip like that again. I made arrangements during the trip to allow for my fatigue. But add masks and social distancing to my plans and it is just too much.
One of my biggest MS problems is what I call feeling MSy. It happens when I am fatigued and hot. I get anxious and can’t think straight. All I can do when that happens is get to a cool place and sit down. Now that summer is coming that can be a problem. Just a walk in the park can be a problem. Last week, I took a walk in a local park. The benches were taped off. So we are supposed to wear masks, keep 6 feet from others and not stop and sit. As a person with MS this is a hindrance to my ability to use the park. I did find a picnic table to rest at and the park was not crowded. But, I can see others criticizing me if I needed to take advantage of a place to sit or have to take off my mask because I am getting overheated.
Managing fatigue and cognitive issues during the pandemic
The first place I went by myself since the shutdown was to Target. I had been ordering online and having friends pick up groceries for 2 months. I just wanted a little normalcy. So, I ordered a new toaster and baking sheets online to be picked up at the store. I just wanted to pick up a few things and then my order. I walked around the store once, and picked up a few things and started toward the customer service area to pay. Someone stopped me and tried to direct me to a register. All of a sudden, I got overheated and anxious and could not talk well to her. I just wanted to be done. I did not want to have to go to one register for this and another for that. It is the same in the grocery store. I wanted to pick up a few things but there are arrows on the floor telling us which direction to go up and down the aisles. This new normal does not make allowances for us with fatigue and cognitive issues.
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