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Shh! Be Wewy, wewy qwiet…

ejourneys's picture

My partner has a saying: "When in doubt, overdo it." Over the past few years, she has slowly been backing away from that habit. As someone with MS, it's hard on her. As her caregiver, it's hard on me. As her caregiver and a cancer patient, it's become that much harder on me.

The good news is that my partner has become somewhat more accepting of her limitations and has learned to listen to her body more. That has cut down a bit on the overdoing part. During my own treatment, especially chemo, I was very up-front about my own limitations, which helped my partner be more forthcoming about (and cognizant of) her own. Basically, I warned her that if she got into trouble, I would be less able to manage the consequences because I was dealing with my own challenges.

Her limitations have to do in great part with her "spoons." I learned about Christine Miserandino's "Spoon Theory" at my partner's MS support group. It's a wonderful analogy, not only for MS but also for things like chemo fatigue.

Last year my partner ran out of energy about a quarter of the way through her planned walk. She blamed it on Vitamin A deficiency and insisted on being tested, but her Vitamin A level is fine. She develops various theories about why she can't do something and insists on them regardless of what I or health care providers observe. I can make suggestions but I can't force the issue; for one thing, the stress of arguing is hard on both of us.

The interrupted walk scenario plays out in variants. Last month she insisted that I park in the lot of the strip mall across the county road from our pharmacy. She wanted to walk to the pharmacy and then meet me at the hardware store, which she did -- two hours later, barely able to walk. She then waited on a bench outside the hardware store while I fetched the car (parked at the end of the lot closer to the pharmacy) and drove it to a spot near the bench. She did not want me to pick her up earlier than that, so I spent most of the two hours communing with my e-reader and setting a mental "to hell with it; go get her" alarm.

We went to the larger mall this past Tuesday. She insisted that I park far from the mall entrance, saying she needed the exercise. I knew what would happen. Even before we reached the mall entrance, she had crouched between two parked cars and dumped the contents of her fanny pack on the ground in search of an old film canister with salt that she carries with her. (Over her protestations I grabbed her cards and cash off the ground before they blew away.) She ingested a small amount of salt along with a swig from her water bottle, then downed an energy bar. We then continued on our way.

Following a stop at the food court, Kmart, and the bathroom, she was wiped out. I walked back to the car, drove it to the exit, and then weathered her scold that I shouldn't have pulled up in front of the curb cut to pick her up. She wanted me to park in a parking spot, despite the fact that I was in the car (able to move it if asked) and traffic was just about nonexistent. Rather than get into the car, she walked beyond it -- slowly, exhausted -- and stood defiantly by a parking space, waiting for me.

Bringing up past incidents doesn't work with her because "things are different now." (Uh huh.) That leaves gentle persuasion and a lot of negotiating, renegotiating, and re-renegotiating. As the Wicked Witch of the West so aptly put it (1:09), "These things must be done delicately, or you hurt the spell."

That's why I haven't yet told my partner about the new rollator/transport wheelchair hidden in the trunk of my car:

This is a Drive Medical Duet Transport Chair Rollator (2-minute promotional video from Drive Medical here). To fit the rollator into the trunk, I have removed the padded backrest (which is reversible, allowing the chair to be pushed), along with the pins for the brakes, which I have turned perpendicular to their in-use position.

The pharmacy with our prescriptions is closer to home. I bought the rollator at a pharmacy/medical supplies store located between home and where my breast cancer support group meets, after the meeting. I had made up my mind after Tuesday's incident at the mall, following on the heels of the other incidents. I also considered the time, after her foot surgery last year, when my partner had needed a wheelchair at the facility where she had gone for her mammogram. The only wheelchair not in use there had been broken, resulting in a jerky, unpleasant ride. Months later, she is still traumatized by the experience.

As moderator Janet Freeman-Daily posted during Thursday's #LCSM chat on "Cancersplaining," "It's important for patient's desire for privacy/independence to be considered." Privacy is why I don't write much about my partner here, except in those cases where I feel it impacts me significantly as a caregiver and as a cancer patient. Independence is tricky, as the episodes above attest. (#LCSM = Lung Cancer Social Media. Like Breast Cancer Social Media (#BCSM), #LCSM includes chats applicable to all cancers, and all are welcome.)

I'll know when the right time comes to tell my partner about the rollator/transport chair. Heck, I was in a wheelchair myself back in January, after the ER took one look at my blood clot and put me in the chair straightaway. (The next thing I knew, my partner was also in a wheelchair, holding the duffel bag for my extended hospital stay on her lap because she couldn't finish carrying it on her own from the car.) I was put in a wheelchair on my day of discharge despite my earlier, jaunty 20-minute walk around the ward. Correcting her colleague, a nurse had pointed to me (because my partner was still sitting in my room) and said, "No, that's the patient."

So, my purchase might come in handy for me, too.

Meanwhile, I have given myself a goal of producing one quick doodle per day by taking a photo with my tablet and then using ArtRage for Android to play with the image. (I add my initials and date using the desktop version, but that's it.) Pieces are posted in my Doodle Quickies album.

I did this one in snatches of a few minutes each at the mall on Tuesday, after taking a shot of my partner's pizza in the food court:


This one uses a detail from a lacquered bowl:


A selfie quickie, done in bed before I fell asleep:


I spent considerably more time on this non-quickie doodle:



Pixie Dust's picture

Hoping that all goes well with both of you. I always love your pictures.    Hugs,   Pixie

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