by Carolyn Thomas ♥ @HeartSisters ♥ March 10, 2019
People living with chronic illness often discover that they must adapt to changes in what occupational therapists like to call our activities of daily living (ADLs). The basic ADLs typically include eating, bathing, dressing, grooming, toileting, and moving around independently (e.g. getting up off that couch). Even smaller changes occur: for example, I now wear a medical I.D. on my wrist all day. I never leave home without my nitro spray for chronic angina. I count out all my cardiac meds for the week in labeled pill organizers. These represent a few of the many adaptations I’ve learned to make since my cardiac diagnosis. .
Today, in this Dear Carolyn episode (our eighth in the occasional series featuring Heart Sisters readers sharing the experiences of becoming a heart patient), we’ll attempt to address a related reader question about adapting.
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Marie wrote to me recently about a change she’s been thinking about:
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“Yesterday while showering, I started feeling pain in my lower jaw, then it quickly spread to my upper jaw. Uh oh. Then it went to my chest. It was more intense than any other angina I have experienced. Dang! I asked my husband to bring me my fitness watch so I could check my pulse (still mid-shower). My heart rate was 125..“Well, I have had high heart rates in the shower before with no angina – ever. Still, the cardiologists said my maximum heart rate during exercise should be 120-130. This was neither a spectacularly hot nor lengthy shower. I was breathing more heavily during this episode, but was it shortness of breath or just due to pain? Not sure..“Anyway, this led me to thinking about adaptations and adaptive equipment..“I always thought that, when my mother-in-law refused to use a walker during her debilitating final weeks of metastatic malignant melanoma, she was being rather unreasonable. She clearly needed one. Holding onto the wall or furniture did not allow her stability or mobility..“My mom was all in with having a walker, but she refused to get a hearing aid despite clearly suffering from hearing loss.
.“I do not need a cane, nor a walker, nor a hearing aid..“But if this shower angina returns, then am I getting to the point where I need to start thinking about having a shower chair in case I become unsteady due to pain?.“Should I get an alert pendant like my mom wore that had an accelerometer to detect falls–at least while showering?.“I am not inclined to do any of this, but I do not want to avoid facing reality..“My self-image is that despite being 66 years old, I am pretty nimble-footed and not frail. After all, I did a rather wild impersonation of Elvis as a surprise during our school Christmas celebration. I wriggled around on the floor, and I shook my pelvis like ‘The King’ himself. Ah, but I digress..“The point is that I sit on the floor with my students. I dance around. I am not an athlete at all, but I am not infirm (yet!) I like to think that I’m not afraid of growing old nor of showing my age. I do not dye my hair (in fact, my gray hair peeking out from my Elvis wig was the clue my students needed to realize it was their teacher disguised as Elvis!) I do not use anti-wrinkle creams. I openly tell people my age..“But getting a shower chair?.“Hmm. Is there a reservoir of vanity within my spirit that rebels against such a sign of aging? The practical side of me says, ‘Don’t be a fool. Would you rather fall in a bathtub and really become infirm?’ But maybe there is a wee bit of resistance lurking within. So even contemplating getting a shower chair or a fall detection device for the shower seems so strange. But I do not want to end up falling..“I wondered if you have ever thought of asking your readers to share adaptations that they have made to deal with their heart issues, e.g:.
- ♥ are there any adaptive devices or strategies that you have found helpful?
- ♥ technology that is reliable?
- ♥ heart rate watches?
- ♥ what is overkill?
- ♥ what is reasonable to monitor, depending upon one’s condition?
“Everyone’s situation is different, undoubtedly..“But maybe your readers have some wisdom to share with us newcomers to this land of heart disease. That is what I love about your blog. There is an acceptance, a sense of welcome, a generosity of spirit..“I think the wise me will win out and I will accept what is needed.”.
All the best,.Marie/Elvis
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♥
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UPDATE on ADAPTIVE ASSISTANCE: It turns out that a number of researchers have studied the scenario that Marie is now experiencing: how to adapt one’s environment (and/or attitude) to make this “new normal” a bit easier – and safer. There’s even an identified model of strategies that patients use when they’re learning to adjust to the day-to-day impact of a new diagnosis on their usual activities.
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The Persson model, for example, describes six positive ways we can adapt, and five not-so-positive ways.(1) The positive strategies are:
- acceptance (includes both stoicism and re-evaluation)
- trust
- positive avoidance
- minimization
- independence
- control
And the negative strategies are:
* Onesie image from Blue Belt Baby
NOTE FROM CAROLYN: I may not be the best one to address Marie’s questions, because I’m a person who has installed an oversized shower with not only a built-in bench seat, but three, count ’em, THREE grab bars (a testament to my overall philosophy that you can never really have enough grab bars in your bathroom). I am all about making life easier and safer at all times. I don’t worry about using something that might make me seem old. I AM old…
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About Marie: “I’m a teacher, mother and wife. I live on the west coast of the U.S. My heritage is Native American. (In Canada, you are all more familiar with the term ‘Metis’); my background is Chippewa and French. My father’s side is part Seminole. I’m participating in women’s cardiac research called the WISE study at Cedars Sinai Hospital in Los Angeles; it specifically explores why patients with coronary microvascular disease tend to develop heart failure with preserved ejection fraction.”
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1. Persson L-O, Rydén A. “Themes of effective coping in physical disability”, Scandinavian Journal of Caring Science. 2006 Sep;20(3):355-63.
Q: What kind of adaptations in your own daily routine or around your home have helped you to adapt since your own diagnosis?
See also:
- The new country called Heart Disease (more about the many early changes I had to adapt to – an excerpt from my book, “A Woman’s Guide to Living With Heart Disease“, Johns Hopkins University Press, 2017)
- Dear Carolyn: “Did I have a ‘real’ heart attack?”
- Dear Carolyn: “I’m having the time of my life!”
- Dear Carolyn: “My husband’s heart attack was treated differently than mine”
- Dear Carolyn: “I had both acid reflux and a heart attack at the same time!”
- Dear Carolyn: “I was never one to complain. . .”
- Dear Carolyn: “People can change for the better”
- Dear Carolyn: “Breaking up is hard to do.”
Heart Sisters 
Be it pride or whatever I also have osteoarthritis in my right knee which sometimes slows me down. In place of a cane I use a walking pole when needed. It acts like a security blanket especially if I’ve overdone it in the walking department.
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Hello Brenda – I have a friend who is a retired physiotherapist. She too recommends walking poles for wonky knees!
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Hi Carolyn,
Acceptance is the greatest part of understanding the conditions we live with. My mom and I owned a large two story house that the city bought. My mom has crippling arthritis and I didn’t want another two story home. We bought a house that has wheel chair access halls and one full handicap bathroom with walk-in shower with built in seat and hand rails.
We turned the garage into living space and raised it to house level. The half bath we turned into a full bathroom and handicap accessible. My hubby was having health problems as well and I felt two handicaps showers were the best for all concerned. The new shower has hand rails and a seat at both sides.
I’m 63, little did I know that I would need it as well. I started falling in the shower the year before my AMI. I had to learn to hold on to the rails when showering and not to shower at night unless my hubby sat in the bathroom.
Take care,
Robin
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I’m with you, Robin. Always better to anticipate that we MIGHT be needing these adaptations down the road so that when we DO need them, they are already there for us. There’s simply no downside in installing a couple of sturdy grab bars if you are already doing a bathroom reno.
Aren’t you smart thinking of doing TWO accessible bathrooms! My mother was in her 50s when she and my Dad started planning to carve off an acre of land from our fruit farm so they could build what mom always called her “wheelchair” house: no stairs, wide hallways and bathroom doorways, grab bars on top of the grab bars (!) – and a level no-step entry just in case mobility limitations might be a reality some day.
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I have cardiovascular disease, Atrial Fibrillation, I have a few episodes a year where I can’t remember how to do things (TIA? Migraine?), crippling Fibro 24/7 and Gout several times a year (beginning to improve with diet).
I had a heart attack 8 years ago. Health has definitely deteriorated over the years. What I do differently:
*Wheelchairs in airports and museums, walking poles, plan every venture out step by step
*Disabled placards
*Medical wristbands
*No longer casual about food I eat
*Keep a Medical Emergency sheet in my purse, on my dash of car, at the front door, which is bullet list of all meds, procedures, emergency numbers….VERY BOLD VISIBLE PRINT
*Generally do very little that requires walking, so no traveling, walking dog, or even being outside…I do sit on stools when I venture out to pull weeds, and this year we are building an elevated vegetable garden
*I sit on stools to cook
*Husband and I are always in touch by phone or walkie talkie
*I never stay alone for long…like days, without someone with me
Whew!
I still keep thinking I can get better. I am working on weaning off some meds, and getting back to meditating, art. I recently lost my best friend in the world 3 months ago, my sister to cancer, so it is another battle as she was the one to come stay with me. I took care of her this last year and am trying to come back.
These new normals cycle around a lot.
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Hello Suzie – excellent list of big and small adaptations. My condolences to you on your sad loss three months ago; that grief will take a lot out of you, on top of everything else you are managing, health-wise.
When you wrote “I still keep thinking I can get better”, it reminded me how a chronic illness diagnosis is so, so different from an acute illness (which I like to describe like this:
You get sick.
You get an appointment to seek help.
You get a prescription.
You get better.
You thank your brilliant doctor.
But being chronically ill, especially with more than one diagnosis, means something very different, doesn’t it? We learn to cherish even the smallest improvements when they do surprise us (like your gout symptoms improving with diet) while simply trying to manage the overwhelming burden of symptoms.
Good luck with your return to meditating and art – those are both so healing to look forward to.
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Marie and her shower experience bring back a vivid memory of a time when I was sitting on the toilet before my shower with a heart rate of 170. I started having chest pain and nearly passed out……as a retired RN all I could think of was the paramedics finding my naked dead body on the floor, wedged between the tub and the toilet.
Luckily I did not pass out….and only had a couple weeks until my cardiac ablation procedure and stenting.
I work to choose adaptations that are not out of fear, but out of practicality and weighing what amount of risk I am actually comfortable with…..Since life is risky even without heart issues.
So far my adaptations have been minor:
1) I have a cell phone app by Kardia that can take an immediate 1-lead EKG from my finger tips
2) I never take on even mildly strenuous activities after eating or showering
3) I chose a condo in a 4 story building with elevators….and got a bonus of grab bars in the shower
4) I have an adjustable bed so I can sleep with my head slightly elevated or sit straight up and sleep in it like a recliner if I need to.
5) I keep very specific notes on chest pain episodes or SOB episodes date, time of day, length of episode, severity of episode. What made it worse or better…. this helps me and my doctor to evaluate our treatment plan…..Hmmm I think we need to develop an app for this!
6) Filling my 7 day pill keeper has become a SUNDAY Meditation…Blessing each little miracle of modern science as I drop it into its assigned section.
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I absolutely love your numbered list, Jill! Thanks for this!
And I can certainly relate to the completely understandable worry (as you’re beginning to faint!) of what the paramedics might think of your naked body wedged between toilet and tub!
Reminds me of two women I met during my Mayo Clinic training who each told similar stories of calling 911 for their significant heart attack symptoms (both cases were 2nd heart attacks, so these women wasted no time in calling 911 because they recognized exactly what was happening).
The first woman’s husband returned to the living room after getting her ‘go’ bag from the bedroom that she’d need to take to the hospital with them – to find his wife hauling out the vacuum (wouldn’t want the paramedics to see a messy floor, right?)
And the other woman countered with her own story, also while waiting for an ambulance to arrive. Her hubby left the room to call their grown kids, came rushing back to the living room, but no sign of his wife. He found her in the bathroom shaving her legs, one foot perched up on the toilet seat (wouldn’t want the ER staff to see how hairy she was, right?)
You have also reminded me of another adaptation I’ve had to learn, because cold temperatures worsen my refractory angina symptoms significantly – even walking through the frozen food aisle while grocery shopping! So I now consciously plot my specific stops along that aisle (frozen peas first, then waffles, etc) and then I RUN down that aisle as fast as I can to quickly snatch my list items.
It seems to work…
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