By Joan Friedlander
A lot of people live and work in environments that aren’t healthy for them, and they will put up with a lot in exchange for something they believe to be more important, or just not worth fussing about. Many don’t even think about it until something wakes them up enough to notice that something is amiss.
Illness is one of those “circumstances” that make it much harder to tolerate what you might normally put up with in order to get along. If you’re anything like me, symptom flares increase your sensitivity to just about everything: temperature, noise, light, smell and even taste. Some of these things can’t be easily managed but many of them can. I want to talk about what can be managed.
My experience says that if you can adjust the outside environment to one that helps create ease in an agitated body, the ability to relax in between surges of pain supports the healing process. When I came up with the title, Business from Bed, it was in direct response to my own adaptation to the extreme discomfort I felt when Crohn’s symptoms ruled my activities. Sitting upright in a chair hurt, being close to the bathroom without worrying about others was critical, and air conditioned environments, talk about agitation! Let me work at home, tuck me under the covers, put enough pillows behind me to support my back, and I can breathe just a little easier. All I needed were the tools for my trade: a laptop, a lap desk, pen and paper, and a phone with a headset.
This is ideal, I know, and it took me 8 years after the first full-on flare to get to this place, to understand the agitations and to start a business that made it possible to create a comfortable work environment. I am the Princess and the Pea, no doubt, but I’m also quite practical. With a son to support, not working wasn’t an option. It took these 8 years of trial and error, but I finally found a comfortable position.
Let’s take this party to a hospital, these places we go for healing when things get really bad, one of the most agitating environments to hang out in. Sick people, constant interruptions, roommates you can’t choose, smells that make you feel even worse, no fresh air, etc. Three months after my initial 4-day hospital admission, I was back in, about 10 pounds lighter with a torn up colon, and was in there for 10 days. Not a long stay compared others I met, but long enough! Fortunately, they had divided the rooms in this hospital so we all had our own little spaces. This was a good start. But, it was a hospital and the smells were not pleasant.
I don’t remember what possessed me to do this, but I asked my then-husband to bring a few things from home so I’d have them in my room. They included a lightweight blanket with Joan smells on it, (I put this over my pillow and draped it over my shoulders, too), a writing journal, colored pencils (doodling came in handy, like amateur art therapy, for me and my son), and my tarot cards. (I was using them at the time to help ease my mind when fear and agitation took over. You might choose something else that helps you tap into universal truths for comfort.) These few Joan things helped me get through that stay a little more easily.
Doing simple things like this can go a long way towards making you feel just a little more comfortable. What’s more, at a time when you feel out of control of so many aspects of your life, having a few items that represent YOU can remind you that you do have a say in what happens to you, and around you. It matters!
At this point, I’m not embarrassed about (almost) anything I need do to create and move around in environments that are as comfortable as possible, even in wellness. I’ll take a sweater or jacket to an air conditioned environment. I don’t care if everyone else is hot! When I was still dealing with flares, but well enough to attend a weekend seminar, I brought that trusty Joan-blanket and sat in the back of the room. As a result, I was relaxed and unconcerned; I was able to attend the entire weekend with no urgent need to get up and to that bathroom. It was so cool.
To be able to stand for yourself and your needs requires, first of all, a dose of awareness, and secondly, the courage to speak up and ask – or just do. This, my warrior friends, is the gift of this ridiculous challenge we’ve been presented with as rare disease and chronic illness patients.
What have you done to create comfort in your environment? How has it helped? Have you gotten any push back? How have you dealt with that? Feel free to share in comments.