Day 4 Reflections of my Multiple Sclerosis memories. One of the many things I struggled with was heat, stress, exhaustion, and fatigue. To this day I still struggle with these things. My home is always 68-70° year round, in any season. I am not able to tolerate temperature changes, I become very heat or cold sensitive and my body reacts badly and my stress accelerates.

When I was able to go back to work after my first exacerbation I learned very quickly people were not as forgiving or understanding of the disease, even though I was assured that I would have mega amounts of support. My fatigue and huge stress levels for the first couple of years was very hard. Stress at work was a huge killer, I went home many times in tears from being yelled at or the work environment was not really healthy.

I wanted to always hide, sleep and just be in an environment that was blissfully quiet, but I never told anyone. I got scared that people would judge, criticize, lose my job, and other things like feeling drunk, nerve pain in my feet, legs and sometimes my hands. When I interviewed for a job, I never told anyone I had MS. It freaks people out and often becomes a criticism or judgement type of environment. Some of how I felt about work actually happened to me I think in 3 different jobs. It was not very pleasant situation and it left me doubting myself for years.

When family and friends came to visit, I tolerated the comments and sometimes opinions that were like, you’re kidding me right. One of my biggest peeves were, you look fine, are you sure you have Multiple Sclerosis? Another one was oh my god! You gained a lot of weight, what happened to you? Comparing to now, wheelchair bound the looks from people, very different. Kind of wish I could go back in time, that way you couldn’t see I was sick or not able to walk.