Living in the in between
For me, the worst part of being the caregiver of someone with a chronic illness and also a patient myself is living in the “in between”- the grey area straddling the line of good and bad, healthy and sick. I am a bit of a control freak (I know, shocking) and get very agitated when I can’t anticipate what’s to come and can’t adequately plan for the future. Ask anyone who knows me- I am the captain of to do lists (and if they aren’t written neatly enough, I’ve been known to rewrite them) and timelines. Professionally, this makes me great at my job because I am always on top of my work and I can multitask incredibly well. But personally, it is a huge source of angst.
Sadly, that’s what living with a chronic illness means- living in between, waiting for your unpredictable disease to flare. It might be in a day, a week, a month, or a year, but at some point, it’ll happen. And while you will try to prepare for that moment to the best of your ability, it’ll hit you when you least expect it, leaving you scrambling.
For us, we’ve had several short periods living in the “in between” and, most recently, a longer stretch that is still ongoing. When Dan was first diagnosed with Crohn’s disease, he was very sick (although neither of us wanted to admit that). Going to the bathroom 20+ times a day, losing weight, malnourishment, and more was our reality. We had a few emergency room trips when he had blood in his urine (no cause was ever identified, but it was thought he had a kidney stone), but beyond that, we straddled a fine line for three years between his disease being “managed” (although in reality it was not managed at all) and him being devastatingly sick.
That period ended in 2010 when he had perforated during a colonoscopy and ended up in the hospital for five days. We found out following that scope that he had a severe stricture with significant scarring from years of untreated inflammation. Dan was started on Remicade with the hope that it would help with the inflammation. We were optimistic and all signs pointed to some improvement- he put on weight, started having more energy, and seemed to be feeling better. But seven months later, Dan had an intestinal blockage in the site of the stricture and, one month after that he had a bowel resection to remove the problematic portion of his intestines.
It has been four years since surgery and we have been back in the “in between” since then. Knock on wood and fingers crossed, the surgery combined with Remicade seems to have put him into remission. We are cautiously optimistic about that because that’s the ideal. However, he still has periods from time-to-time where he is symptomatic, and that triggers my nagging concern about when this period of good will end and my need to be able to prepare for when that happens.
There is no way to predict the future or be prepared for when the good transitions to bad. And believe me, it is not healthy to dwell on when the bad will begin. But there are things you can do to help alleviate some stress and better deal with the unknown. The American Psychological Association suggests that, when coping with a chronic illness, you should
“…try to manage the elements in your life that are within your control. You may not be able to control certain aspects of your disease, but you can choose to eat healthy meals, take medications as prescribed and spend less time with people who aren’t supportive…Minimize stress by letting go of unnecessary obligations. You may be able to take time off from volunteer commitments, for instance, or ask for more help from family and friends. Build a strong support network you can rely on, and communicate with them about how they can best help you manage your disease.”
How do you cope with living “in between?” Let us know in the comments section!
Entry filed under: Caregiving, General Disease, Mental Health, Treatment. Tags: Anxiety, Colitis, crohn's, crohn's disease, Crohn's Sucks, ibd, inflammatory bowel disease, stress, uc, ulcerative colitis.