Tomorrow will mark the end of my first month of shoulder rehab. When I visited the doc yesterday, I hoped he would allow me to perform shoulder exercises at home, without the need to visit the rehab center again. He told me the best recovery I could expect is about eighty-five percent usage of my shoulder, but not without the help of a professional physical therapist.
I figure I knew that on my own. It’s just the rehab with my MCS is a rough ride. The morning neti pot and the antihistamines I gobble down do get me though the hour of exercises, but when I get home and change to shower—only after the coughing diminishes–my clothes and my skin are coated with the fabric softeners that have been absorbed by the exercise cushions.
But it was only once that I did not make it through a session. About a week ago, some scent affected me within seconds after I entered the facility. It cut deep into me as I signed in. I cleared my throat, took a sip of water and entered the exercise area with the intent of not giving in. I downed yet another antihistamine. But my attempt to follow my routine failed within minutes. My throat-clearing turned into coughing and then upgraded to gagging when my throat flooded with mucus. As I headed for the door, light-headed, a visiting gentleman who didn’t know what was happening tried to help me. I waved him off and got out of there. (I’ll explain later in this email how meeting this gentleman a few days afterwards may have helped his wife recognize her possible MCS.)
As I mentioned when I first told you about my hospital stay because of falling headfirst down my basement stairs, my MCS did not show itself while I was in the ICU. It affected me only after I was in the hospital’s general population. The uncontrollable coughing because of fragrances was hurting my seven fractured ribs, so the docs, who wanted to keep me hospitalized a bit longer, met with me and agreed to release me because all that could be done was to hold pillows against my ribs. And it did help my cause when I explained that my wife was still a licensed RN.
I left the hospital determined to follow all doctor instructions and nursing orders. I faithfully took my meds and used the incentive spirometer—slow deep breaths ten times an hour. My MCS affected my recovery at home in a passive way at first. With seven fractured ribs an inclined position was best for me. But we had no recliner. Nor did we have a “husband pillow.” As you know, purchasing either was not an option because of the inevitable off-gassing of chemicals in new furniture frames, cushions, etc.
But it was easy to apply “improvise, adapt and overcome” to the situation, and I got along fine spending nights propped up with my pillows on the sofa. We were extra careful to minimize my exposure to fragrances. It was normal for me not to have visitors because since getting worse some three years ago, I’ve been unable to visit relatives anyway. And when something could not be avoided (plumber, stove and washer repairmen, for example), exhaust fans were turned on and I was relegated to sitting in the bedroom.
For anyone with fractured ribs there are nursing orders. Included are, “Please maintain sinus precautions at home, wipe away nasal secretions carefully. No nose blowing for four to six weeks.” I know you understand why these rules stand out to an MCS sufferer.
The pillow system worked well, but even with my wife helping me to sit upright and stand, my pain was a number ten for weeks. I was injured on March 1st. By the end of the month I was able to get to my feet alone, the pain factor having slipped to five or six. Although it would be some time before I could do any heavy lifting, the first morning I experienced the lower pain level in my ribs (the shoulder pain was its own problem but manageable) I believed I was now on my way.
But there was a change that afternoon. My wife came home from food shopping and had to lug the plastic supermarket bags through the house and into the attached garage by herself. I usually carry the bags to the garage and unpack their contents onto a table and use a fan to air out the groceries before they’re brought into the house for storing. Everything from recycled cardboard packaging to the clear plastic sealer on meat products off-gases forever. The bags themselves carry the detergent-aisle fragrances to the ends of the earth, and for me the reusable bags are unusable because they pick up the scents from the products . . . the endless cycle.
Working alone, my wife left the packages near the door until all was unpacked from the car, then did the garage routine herself. Somewhere through the process, a renegade bag ended up out of sight under the kitchen counter, off-gassing.
So I had no idea why I so suddenly began coughing so hard that I had to get to my feet, my body hunching forward as it always does when I get an attack. My wife had already changed her clothes, as each of us do after shopping, so there was no figuring it out. But the coughing hurt. (There is another nursing order for fractured ribs, “Do not blow up balloons.”) This is so you don’t force your lungs out into your ribs with same force as coughing.
By the time we found the source of the attack, got rid of it, and turned on an exhaust fan it was too late. My coughing ended eventually but not the pain in my ribs, a number ten pain even at the slightest touch, and of course when sitting, standing, etc. There was more to come: I had several follow-up doctor visits, and with each clinic visit I was exposed to those things that attack me. In between, my wife had to have her regular post-cancer checkups, which always carry fragrances, though briefly, into the house, into the living room where I had to remain until I could sleep flat in bed.
As a consequence, my ribs are still displaced, always in the process of healing but not yet healed, as shown by new x-rays, all because of the daily coughing caused by my MCS. And the shoulder’s recovery is suffering because of my inability to perform certain exercises. I am making progress with it, have more range of motion now, but would be doing much better at this point except that “The ribs are holding you back,” as both the doc and the physical therapist told me. (I had a heck of a time just yesterday after leaving the scents in the doc’s examining room and going to the rehab facility.) So now I plan to rest the ribs and “baby” them even more, and stop trying to do “just a few little things.”
Okay, the gentleman I mentioned earlier drives his son to physical therapy. When he saw me yesterday, the first time we met since I waved him off, he asked how I was. I told him and briefly explained about my sensitivity to chemicals. His eyes widened and excitedly he told me that his wife had recently had a coughing spell, that a terrible rash had broken out on her back and neck. Then he told me that last week she was tested with a patch by an allergist and was told she was “allergic” to either a chemical or chemicals. I missed that part because of his accent and my hearing. He said they will try the vinegar and cold water to decontaminate their machines and her clothes and stop the fabric softener. I will see him again soon and learn what happened. Of course I will pass it along.