Example:
I am in a massive flare of everything and really do not feel well. When able, I rest. When I have to be somewhere, or do something, I go into performance mode and somehow manage to appear as if I am normal, nothing obviously wrong. I had to give a presentation. The setting was such that t-shirt, yoga pants, and tennis shoes (what I wear probably 99% of the time) were not ideal. Also, I do have a few outward indicators right now--with being off all anti-inflammatory medications and all antihistamines. My face is red and blotchy from reacting to something unknown. I have the bruises from failed attempts and the finally successful IV from a week or so ago on my arms, plus my arms have hints of rash as well. I have a low grade fever. I limp. Most people have the luxury of just deciding what to wear that will look nice. I start there....but also keep in mind what will be comfortable, what will hide the more visible issues, etc. I ended up with a long sleeve soft knit shirt (long sleeve to cover bruises and rash on my arms), soft knit maxi skirt (cover all of legs which have hint of rash, and also turn purple if I stand in one place too long), scarf, I actually wore make-up (rare and sometimes react to it as well), and I wore comfy flat shoes (but still supportive). But, what no one knew was the make-up was to help mask the blotchy red face and I chose a blue scarf to bring out my eye color rather than my more typical bright pink scarf, which would have drawn more attention to red, blotchy face. (I use red or pink to add color on days that I am so tired that I am pale. Today I was running a low grade fever as well as reacting to something, so had no need to add color, but more to tone it down or distract from it.) I also had compression shorts on underneath the skirt as low back, hips, all surrounding muscles are flared up and painful. I was also maxed out on all medications I can take and timing of the stronger pain medication had been such as to make sure at peak effect for the duration of the presentation.
I was told the presentation went well. The biggest distractions were the technology issues that presented themselves. Technology issues no longer fluster me the way they used to do, possibly because I am fighting bigger battles? My mouth was terribly dry from muscle relaxant side effect, but I had brought my water bottle with me and just sipped water as needed.
Once home, I took the above photo to document that I can still dress up and be presentable even when in pain and miserable, but then changed into t-shirt and shorts--pulled regular shorts over the compression shorts. Also, back in tennis shoes prior to PT appointment later. I survived another day of pretending to appear normal.
This post was actually written late in the semester--during "dead week." Things are still not going well, I am still barely hanging on. I can still mostly hide things, but it is largely from isolating--no one actually sees me to know how bad it is. Earlier in May one of my doctors saw through it and asked if I was doing OK--sort of, not really, but will eventually. Asked if I had resources? Yes, and I will be OK with time even though things are very challenging. Some days I do OK, but more often it is nearly impossible to sit, stand, or walk and I spend most of the day lying down.
