In contrast, I have had relationships with women who became upset at the first sign of anything inconvenient - one girlfriend who threatened to break up with me because she thought my beard trimmings were clogging the bathroom sink, and another who blamed our problems on my insomnia. It may be far from the bedroom romps we each had experienced before getting sick, but knowing that nothing about my bedridden life makes Shannon uncomfortable endears her to me. But I have since come to realize that it’s all part of sharing our lives. I was embarrassed at first to ask Shannon to avert her eyes and try not to think of me urinating inches from where we had been kissing just seconds earlier. These are not sexy things but are part of life - my life and ours together. I, on the other hand, have to do everything in bed - brush my teeth, bathe and use the “bathroom” - a plastic bag for bowel movements and, for urinating, a dubious-looking plastic container attached to a tube feeding into a bucket on the floor. Shannon can briefly get up to use the toilet, bathe and, on a good day, make herself a meal. It’s like a monthlong sleepover and feels surreal, being stuck in a situation so miserable that it could make your skin crawl, but finding comfort knowing that your soul mate is next to you going through something similar.īut our experiences differ. We both have low blood volume, which makes it difficult for her to walk without fainting and impossible for me to sit up in bed without intense pain and weakness. She is often malnourished and her weight drops below 100 pounds - too thin for someone 5 foot 5 inches tall. Instead, she struggles with unrelenting nausea and has trouble digesting food. She has been sick longer, since adolescence, but thankfully has never lost her ability to speak. We are two people very much in love but also very sick. We met online, which is common, but otherwise our relationship has no precedent or guide. She lives in Ottawa, about 2,000 miles from my house in California. I had to delay love and many other things while I waited for my health to stabilize. I used to be a bodybuilder who worked out for hours every day, and I was blindsided by the rapid deterioration of my health. I’m now 29 and have been sick for eight years, the last three of which I have spent bedridden, mostly speechless and unable to eat solid food. Lyme disease had exacerbated my existing case of myalgic encephalomyelitis, an inflammatory multisystem disease that can leave patients unable to speak or eat for years at a time.

What is love means to you