My intention with this article is to inspire you to be able to find ways to do things you once loved or enjoyed. My counselor recently told me that I need to make a list of new expectations for my new reality. That’s just it. All of us with chronic illness have a new reality that we certainly didn’t ask for.
My husband loves a challenge. When I really want to do something we brainstorm together and find workarounds. I loved when we would go to the Oregon coast and walk the beach looking for glass floats. If you aren’t familiar, local artists in Lincoln City make blown glass orbs in all different colors and designs, then the city has local volunteers hide them along the beach. Each one is engraved with a number and can be looked up to find which artist made it and on what day. They hide approximately 3,000 each year. We never found one and I was really bummed that we probably couldn’t go back and do it again. My husband reminded me that in fact, we could, we just needed to find a hotel with accessible beach access (not 65 stairs straight down) and we can rent a wheelchair with tracks, making the sand available to me again. Brilliant.
I’ve always liked traveling. Gone are the days of working all day, then leaving work in a rush to drive through the night to enjoy a quick weekend getaway, only to rush home in time for a quick nap before heading back to work. My body can’t even get through a workday anymore, much less cram in a quick getaway on the fly. It doesn’t mean that we can’t still do little trips to escape, but we have to make adjustments. We have to have an extra day after we arrive for me to spend all day resting in the hotel bed. Is it more expensive? Yes. Is it a bit more inconvenient? Yep. But we can make it work and still enjoy little trips as long as we plan ample rest before and especially after the journey there.
Driving really long distances straight through is out, but we can find a fun little town half-way and grab a hotel there to break the drive into two days, instead of one. Sometimes it’s fun to stay in a teeny tiny town on the way to the tourist destination anyway. The other option is that instead of driving nine hours in a day, as we used to, we could instead fly over to be much closer to our final destination. Then we would only need to rent a car and drive a couple of hours to get to our final stop. Again, just another option that can be considered, even though it’s not what we used to do.
My sister-in-law always wanted us to go to Scotland with her. Once this became my new reality I was bummed to realize I couldn’t make that flight over the ocean at such high altitudes. My husband found some different options to get there by boat though. Yes, it is more expensive than flying. Yes, it takes longer meaning my husband would need to use more vacation time. But I can’t tell you how nice it is just to know that it is possible, even though we certainly aren’t planning it anytime soon. Just knowing that it could be done and we don’t have to completely eliminate the possibility of ever doing it means so much to me.
Now, maybe you aren’t at a place yet to even consider travel. Here are some of my best workarounds for around the house and day-to-day life. In our bedroom we have a remote to turn on the fan and the overhead light, eliminating the need to get up and walk to the switch. If I want to be well enough to do a certain activity, I have to pre-plan my rest. I write my rest days on my calendar to make sure I don’t accidentally schedule an appointment. I load up on electrolytes and avoid foods that tend to make my belly angry for days before the event to make sure I’m at my healthiest. On a regular day, I still plan rest times between each activity, such as a shower, doing my hair, makeup, etc. Speaking of showering, I keep a wireless doorbell in my shower and only shower when someone else is home. I can hit my doorbell and get help right away if I feel faint or fall.
Another workaround is to take my pills when I wake up early to go to the bathroom, then when I get up for the day a few hours later my pills are already in effect. I take double water to my bedroom- one insulated and one not. I drink the non-insulated one first then the other is still cold when I get to that. Doing that cuts my trips to the kitchen in half. I keep a candle on my nightstand to help when odors upset me. I also have my pulse oximeter and blood pressure cuff on my nightstand so I can keep records for my doctors. It’s important to have entertainment items near all of my rest places- some examples are my cross stitch, a book, coloring book, Ipad, etc. That way I never feel trapped without something fun to steal my focus. On better days I pre-cook freezer meals to throw in the oven on bad days. I can’t lift up the dog water bowl multiple time a day to refill it, so I keep it in the floor in front of the sink and pull the sprayer out to fill the bowl throughout the day.
I know I’m not the only one who is frustrated by not being able to do things that I used to be able to do. We just need to spin the perspective a bit. It’s not so much that we can’t do things we used to do, it’s just that we maybe can’t do it in the same way we previously did. But there is almost always a workaround to be found.
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