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One morning last week, I turned on my phone, but it powered down almost right away. I turned it back on and checked the battery. It was at 0% after being plugged in all night. I just had the battery replaced the previous week, and now the phone wouldn&#8217;t charge or stay on for more than 10 seconds, even while plugged in.
Being without a phone is problematic. My husband, Todd, has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, and he pairs his phone with his computer to contact me if he needs help. My phone allows me to do chores around the yard or run quick errands in town. Also, I communicate with his night caregivers via text, such as when they need to cancel due to illness. It was time to get a new phone.
The rest of my day was filled with annoyances and logistical challenges — attempting to write down my contacts with a phone that wouldn&#8217;t stay powered on, arranging with my mother to borrow her phone while I ran to town, and letting <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">my teenage son</a> know I might be late picking him up from school.
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Todd talked me into getting another battery, just for the convenience of transferring all the data, and the technician kindly replaced it free of charge since it had lasted less than a week. Then I went to the phone store and selected a new phone, but the data transfer failed because the new phone had only half the memory of the old one.
I left the store without setting up my new phone and was late to pick up my son. “Let me tell you about my day,” I told him as he got in the car. I gave him the play-by-play description.
He looked amused. “There are wars going on in the world,” he remarked.
“I know, I know,&#8221; I replied. &#8220;It’s not a big problem. It’s not my biggest problem. Dad having ALS is a much bigger problem. But it’s still frustrating.”
“I get it,” he said. “I get frustrated when my computer isn&#8217;t working. Let’s go back to the store.”
We returned the new phone and purchased another one with adequate memory.
Later that evening, I related my phone saga to my daughter and my husband. It’s a story about nothing important. It was a manageable problem — not even a problem, just a tedious afternoon — but it felt good to vent about a situation I could control.
In life with ALS, I often feel defeated by situations beyond my control.
It was nice to deal with normal, everyday frustrations instead of trying to find last-minute <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers</a> so that I can sleep, <a href="https://alsnewstoday.com/columns/people-with-als-support-medicare-power-wheelchair/">fighting with medical supply companies</a> to get my husband the equipment he needs, running to the house to help Todd in the bathroom before I have a mess to clean up, or handling life-and-death scenarios in which <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">I race to clear his lungs</a> so that he can breathe.
I <a href="https://alsnewstoday.com/columns/power-distraction-when-dealing-with-negative-emotions/">write about my frustrations</a> in some of my columns, but I often hold back when talking with friends and family. No one wants to hear me rant about the same unsolvable issues that come with a progressive disability and incurable disease. Sometimes I journal about my frustration, and I cry, but it’s emotionally draining and exhausting to <a href="https://alsnewstoday.com/columns/long-term-grief-wolf-like/">grieve</a>.
A few days after the phone incident, I chatted with my friend Jana. “I don’t know why, but it feels good to vent about something little,” I said.
“I think it’s a way to deflect the grief we feel,” she replied. “Some things are too much for anyone to carry, but venting about the little things is like opening a release valve on a pressure cooker. It’s a way to let out a little steam.”
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Discovering surprising new ways to release the stress from ALS

I’ve lived in the shadow of my husband Todd&#8217;s <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">the past 13 years</a>. My days have been clouded by the bitter reality of knowing that life will only get harder until it&#8217;s over. The daily stresses of my caregiving are intense: clearing his airway when he chokes on food or his <a href="https://www.youtube.com/watch?v=ITcMaevMO04">lungs fill with mucus</a>, rushing to get his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a> going when he loses his tidal volume, and trying to find <a href="https://alsnewstoday.com/columns/challenges-hiring-nighttime-als-caregivers/">night caregivers</a> so both he and I can sleep.
Last weekend, one of Todd’s caregivers gave notice. She found a full-time job with benefits, and she hoped to stay on with us, but her schedule conflicts with the nights we need help. Anxiety flooded my body as I wondered if I’d be able to find someone to cover her shift.
When we lose a caregiver, I’m brought back to the <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">stressful days</a> in 2014, after Todd lost his ability to move enough to sleep independently. I was up and down all night while taking care of him. After two years of sleep deprivation, I realized that if I didn’t get sleep, our kids were going to lose two parents to ALS. We started fundraising to hire night care, and then we hired caregivers for Todd so that I could be off duty each night from 11 p.m. to 5 a.m.
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<h3>Coping with life with ALS</h3>
I posted on social media about Todd’s caregiving need. I sent text messages to friends and current and former caregivers, letting others know we&#8217;re looking for help and asking if they could spread the word and provide referrals. I emailed a home-care agency that used to help us, but with low expectations because they haven’t had any staff willing to take on a night shift for a few years.
When things fall apart, I feel furious that this is our life and that our healthcare system doesn’t provide adequate support. I’m already at my max. My fury gives way to defeat and resignation. And all I can do is wait and hope someone comes forward.
Distraction can be a helpful tool to address negative emotions, and I was able to relax a bit today when I got up on scaffolding to paint nail heads on the red gables of our newly constructed snow canopy. Being up high while touching up the paint took all of my concentration, and for a while I quit thinking about trying to find a caregiver.
Here are some other ways I distract myself from the stress of <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>.
<ol>
<li>Nature walks. I usually listen to podcasts while I walk, so I’m not ruminating on the challenges of life.</li>
<li>Television. Todd and I are now laughing our way through &#8220;Ted Lasso.&#8221;</li>
<li>Mountain biking. I focus on staying on the trail while avoiding rocks and roots. There&#8217;s no time to think about ALS when I’m trying to keep up with my 14-year-old son.</li>
<li>Outdoor work. I’m expanding my walking trails into the woods beyond the fields near our house. Using my tractor, I pull trees with the grappler on the front and chew up smaller brush with the brush hog on the back. It’s work, but it’s a different type of work than caregiving, and it rejuvenates my mind.</li>
</ol>
What distractions take your mind off ALS? Please share them in the comments below.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: stress

Discovering surprising new ways to release the stress from ALS

The power of distraction when dealing with negative emotions