The above title is meant to be sung to the tune of “Head, Shoulders, Knees and Toes, Knees, and Toes. “It’s the chronic illness version of the song. When you get sick, no one tells you the amount of gear that comes with being sick. It’s not fun, cute, athletic gear that all the Olympic athletes were rocking a couple weeks ago. Trust me, I would welcome that gear. I am actively trying to figure out how to compete at the 2028 Olympics so that I can get some of the cute gear they get.  So far, I have settled on curling being about the only sport I could do and that’s debatable because I can’t stand for long periods of time. Anyways, I digress…  The gear ones gets to rock as a result of chronic illness is boring, obtrusive, and a near constant reminder of the ways in which my body is different now. 

At age 37 I have compression socks for my legs, a compression garment to wear at night, a wrist brace, a compression sleeve, a shoulder brace (that one just was added to the mix recently, a lymphatic pump system, and most days at least one body part taped with KT tape. I am literally a walking ad for a medical device company and none of It is cute and none of it goes with my outfits. Yes, I realize that’s a first world problem and not really the point of any of these things, but if I must wear them, I’d like them to be cute! 

For those of you who have the gift of design there is a seriously untapped market in designing mobility aids, braces, compression garments, etc. for people that want something with some fashion. The choices right now are beige, black, and for some reason every company has an American flag design. Apparently, someone told them a significant number of people want to look like the American flag has thrown up all over them and/or like they could jump into a patriotic parade at any moment. 

I’m supposed to wear my compression socks, garments, and braces every day. In the beginning I was good about it, but as time has gone on, I have gone more days without wearing them for a myriad of reasons. One, right now in Nebraska we are in the season known as “Satan’s preferred level of humidity” and wearing a compression sock, compression sleeve, and braces on my wrist and shoulder just adds to the feeling that I am literally sweating my way through hell fire temperatures every day. Two, there are days I don’t want to look down at my leg, wrist, arm, etc. and have a tangible reminder of the ways in which my body is different and doesn’t work like it used to. Third, there are days I don’t want to deal with people’s comments. Many times, that I wear them, I get the questions of “What happened?” “What are those for?”, etc. and there are days where I can’t politely just smile and give an answer. There are days when my response to those questions would be not the nicest and far more colorful than most people would be comfortable with. On those days, I don’t wear them. If you are one of the people in my life who have asked the above-mentioned questions, it’s ok and it’s a totally normal human response to ask. There are just days I am more able to deal with those kinds of questions than others. 

Recently, I added a lymphatic pump to my collection of chronic illness gear. The lymphatic pump is a large machine with a vest that I wear over my chest and a garment I wear over my head. Each component has a long hose that attaches to a machine and the goal of the 2x a day treatment is to stimulate my lymphatic system in the hopes of decreasing the inflammation and pain I have on my left side. I have included a picture below because you honestly must see it to believe it. I literally look like a human octopus when I’m wearing this machine. I am incredibly lucky that this incredibly expensive machine was completely paid for by Medicaid and have already noticed positive effects from it, but it is yet another piece of “gear” that reminds me my body doesn’t work like it used to. 

There are many things that have taken me by surprise since getting sick, but I had no idea that a section of my closet would turn into a Walgreens with a plethora of support items my body now needs. Anytime we face something unexpected in life, the surprises seem to come in waves. There’s the initial shock that feels like a tsunami and then there’s the daily aftershocks. The daily quakes that shake your world enough just to remind you that things are different, your life is different, who you are is different, etc. Sometimes these aftershocks are measurable and other times they pass by without us even noticing. Right now, for me there are many daily aftershocks but lately they have come in the form of braces, compression garments, and lymph pumps. If you see me out and about and I am not wearing a brace or compression garment, know that it’s not because I don’t need to its because maybe I didn’t want to feel the aftershock that day or… I have on a particularly cute outfit that I don’t want to ruin.