When You Can’t But You Do Anyway
It was Thursday about lunchtime. I’d decided I could no longer ignore the flare. My main RA treatment had quit working and even though I’d started on the replacement drug, it had not yet taken effect. It seemed like every day I had less energy and more pain and swelling.
I had spent the morning working on a project and running a conference call. Those tasks checked off my list, I had decided there was no reason why I couldn’t just take some Tylenol and rest during the afternoon.
Life continued as my flare got worse
My husband's health emergency
My husband stopped by the house as he often does at lunch. But today was different. He had developed a sudden and potentially serious health emergency. We immediately went to the emergency room where we stayed for seven hours while the medical team got him stabilized and was able to admit him to the hospital. Visitor chairs in emergency treatment rooms are not built for long-term occupancy. They’re pretty terrible when you’re there just getting stitches or an X-ray. When you’re trapped there for hours, they become a torture device.
Managing work duties, home life, and my husband's recovery
For the next three days, I was up at the crack of dawn getting project work done and keeping the house running before going to the hospital to be there early enough that I didn’t miss the doctors’ rounds. I sat in my husband’s hospital room making sure he had what he needed and monitoring his progress well into the evening. Every day my flare was worse.
Being a caregiver living with RA
There wasn’t a choice. Regardless of the fact that I was having my own health issues, I needed to manage my husband’s more serious situation.
Currently, there is a television commercial that advertises cold medication with a punch line about Dads not being able to call in sick. That’s also true about RA and, more often than we’d like, people with RA have to keep on going even though the thing we want most is a pain pill, a cup of tea, and a comfortable bed.
Caregivers with RA are often conflicted
While employees with sick leave benefits have some flexibility to take the day off (as long as it’s not too often), others have to make a choice of going to work or not getting paid. RA sufferers who are also caregivers – moms and dads and those taking care of aging or ill family members – are probably the most conflicted. Like the commercial says, sometimes you just can’t call in sick.
What to do?
How do we manage?
It’s one thing if the situation is temporary like the one my husband and I were in. Somehow you do the best you can do and muddle through, taking the best care of yourself and the situation as you can.
Having to make difficult decisions
Other situations can be life-changing. Some people, like me, find at some point that working full time isn’t a real option. Others find that managing RA is a full-time job and take retirement or disability. I suppose I worry most about those people who are single parents and the sole breadwinner for the family. They don’t get to work part-time or retire. Their choices are seldom easy.
Making the best choice we can
We have to make the best choices we can with the options we’re given. We have to choose to take care of ourselves so we can take care of others. We have to find the best balance we can between devoting time to managing the disease and managing the rest of our life – relationships, work, faith, and other commitments. Sometimes we have to quit being the caregiver and become the one receiving the care.
There is an old adage about planning on living forever but living your life as if today was your last. I think RA is like that. You have to understand that you very probably will have RA for the rest of your life, so you have to think long-range. But life isn’t long-range, it’s day-to-day and you have to be prepared to respond accordingly – whether it’s a scramble to address a family emergency or the blessing of a real feel-good day when anything is possible. And some days you just have to even though you don’t feel like you can.
Has having RA put a hold on your ambitions?