Letter to Normals (Part 6)

“I mentioned my sensitivities earlier and I need to talk about them again.”  Most people with this condition have strong sensitivities to smell and sound, but I do not have much of a problem with these. Sound only affects me if I’m already having a ‘bad day’ or ‘flare.’ I also have a problem with heat and cold.” The cold is one of my main triggers and even air conditioning or being outside a short time can leave me feeling absolutely horrible. The heat, even for a short time, can leave me feeling similar to having sun poisoning, but without the actual sun burn. “It sounds like I’m never happy but that isn’t it. These things make me physically ill. [It stresses] me out [because it makes] my pain worse and I get exhausted.” Remember that sometimes when I feel this way I may be very quiet but “there’s nothing you can do to make me feel better, so it’s just better to let me be.”

“I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep.” Other times, I sleep for very long periods of time. I may even sleep for a very long time and still feel exhausted when I wake up. This occurs because my brain waves are affecting my sleep patterns. I know that may sound confusing. “There are times when tossing and turning and getting up and down to go to the bathroom” several times can be really disruptive.

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