Multiple Sclerosis Storytime

A day in the life of a person with #SecondaryProgressiveMultipleSclerosis.

I got up at 7, went to church, and I even arrived on time this morning! I had a great morning and lunchtime at my favorite #Mexican restaurant. Yeah, ya know, the one I post about a lot!

I picked up my daughter from the late Sunday school class she goes to. We went home so I could change clothes before going to THE Sevier Co Walmart bc I have learned that the earlier I go, the fewer people will be there. That does not mean there are only a few people!!!

My daughter told me she wanted to go with me today. That was unusual, but I soon learned why. SHE wanted to go to some stores in the nearby #tangeroutlets in #Sevierville. I figured no big deal, we could go to the mall first.

On the way out of the first store, I told her that I had to find a Coke machine. I was hot outside & quickly getting sleepy! I drove her to the other store & stayed in the car while she went in. I drank my Coke, which will usually help me out. I started drifting off. She came out with her shopping bag before too long.

We decided it was best for us to go to my brother’s house bc he lives very close to the mall. We made it there safely where I slept on a chaise lounge for a few hours.

My neurologist, sleep doctor, and PCP have been changing my medication to determine WHY I get so sleepy & HOW to fix it.

I do what I can to stay as cool as I can, but I’m thinking I will soon have to bring out the big cooling stuff I usually only use for my daughter’s swim meets in the summer.I use the plastic fans at Walmart that spray water while the fan blades spin. I have a smaller bottle of water that I can spritz on myself. I learned a really cool trick a few years ago. I get sponges, soak them, put the wet sponge in a freezer bag, and put them in the freezer overnight or until they are frozen. Then when I’m in the heat I just rub the sponge on my face and neck to help me cool off.

One of my biggest changes this summer is the length of my hair. I’m not really sure when I got it cut last & it is the longest it has been in a long time. I am not cutting it for another month or two bc I can twist it back in a bun instead of the usual sloppy buns that I usually wear.

Can you tell anything about my hair from the pic?

Do you or anyone you know have MS or another autoimmune disease?

Have you ever been to the Tanger Outlets in Sevierville?

#autoimmunedisease #coolingtechniques #ms ##orangeforMS Sevierville @Tanger Outlets Sevierville

2024/7/1 Edited to

Living with Secondary Progressive Multiple Sclerosis (SPMS) can present unique challenges that influence daily life. Fatigue is one of the most common symptoms and can significantly impact how individuals experience their day-to-day activities. Many people with MS have learned to manage their energy levels through careful planning and adjustments, such as taking breaks, pacing themselves, and finding effective cooling techniques. During hot weather, it’s crucial for those with MS to stay cool. Heat sensitivity can exacerbate symptoms, making it vital to use fans, cooling vests, and even homemade cooling solutions like soaked sponges. Simple but effective methods can help alleviate discomfort, ensuring a better quality of life for individuals. Engagement with family and friends is essential for emotional well-being. Sharing experiences, whether it’s a visit to favorite restaurants or shopping at local outlets, brings joy and supports mental health. Moreover, connecting with others who have MS can provide valuable insights and shared understanding that are crucial in dealing with this condition. If you, or someone you know, is living with MS, it's beneficial to explore local resources and communities that specialize in autoimmune diseases. By fostering connections and tapping into support networks, individuals can find encouragement and a wealth of shared knowledge from those navigating similar journeys.