Doing Less

As the disease and medications took their toll on my body and sapped all my energy, I stopped volunteering, I stopped kayaking, after a horrible and to this day embarrassing gastric incident at the gym, I stopped going. I gave up most social activities and friends began complaining that they rarely saw me anymore or that I was constantly cancelling plans. When I did see them, I know they felt I talked about my disease too much, and I did. I desperately wanted them to understand my struggle. I’ve learned that, while they may try, they really can’t grasp the all-consuming nature of the disease. There is not a moment in my day when my stomach is not a factor in what I am or am not doing. Add the additional problems I began having…muscle, joint, back and hip pain as well as the side effects from medications, i.e., heart palpitations, blurred vision, anxiety, hair loss, moon face and more … getting together with friends became more effort than fun, so I stopped that too. I am pretty much a homebody. When I do make that extra effort to go out, it is close to home, and typically with family for a special occasion. Those family members who are closest to me, have lived this disease along with me, are my rock and shield. They know that if they go anywhere with me, there is a good chance they will get stuck for an hour or more waiting outside a public restroom, only to head back home. They know that to get a few hours upstate to a funeral, I had to stop at every restroom along the way and even on the side of the road. And they know more…so much more.

As I stopped working out, volunteering and socializing, my symptoms continued to increase, and I downsized my life even more. I lessened my work hours to 30 per week. That helped, but as time passed, I found I still couldn’t keep up. I was literally putting all the energy I had into surviving those 30 work hours and my home life was in shambles. I did not have the energy to maintain the house anymore, so we decided to sell our 3/2 home with a pool (our home of 25 years) and moved into an easier to care for 1/1½ condo with a community pool. My conditions continued to worsen. My “stomach” was out of control, I was experiencing increasing back, hip and joint pain, fatigue was intense, and my immune system was so low that I had some type of “itis” every other week (sinusitis, tonsilitis, bronchitis). My co-workers were coming to me with helpful hints like, try lemon and honey, take multi-vitamins, change your toothbrush and “an apple a day…”. I even got the nasty remarks in the restroom such as “didn’t you have an upset stomach last week?” Looking back, I was on the edge of a complete and total breakdown. I was calling out of work sick more and more and I felt like a total failure. After a horrible gastric incident on my way into the office, which had me turning around to go home for clean-up, in pain and totally humiliated, I finally admitted that I could no longer work. The year was 2019. Then came 2020.