Sunday, July 05, 2020

Weekly Inspiration: Roll with the Punches

Stress and anxiety are sky-high at our house lately. My 95-year-old father-in-law has been struggling during the pandemic, and we've seen a decline in him both physically and mentally because of the isolation (he's still in independent living, so my husband visits, but he can't leave his building and spends every day just sitting in his apartment). We were finally able to get the whole family together with him on Father's Day for an outdoor socially-distanced visit, and he loved it! We brought his favorite McDonald's meal (his favorite meal, period - ha ha), gifts, and got him telling old stories. In the days following our visit, he seemed more engaged and mentally "with it." So, we tried another outdoor visit that following week, just four days later, but he was confused the whole time and couldn't even remember old stories he's told thousands of times.

Since then, he's fallen off a cliff, cognitively. He hasn't had a single lucid moment in weeks now and just gets worse and worse. My husband is running over there (about 20 min from our house) at least twice a day because he's completely forgotten how to care for himself. Meanwhile, I spent my week first calling services that offer in-home care (much too expensive on top of his rent) and now, assisted living facilities. We were determined not to move him into assisted living during the pandemic because we won't be able to see him, but we no longer have a choice. We are working with his doctor to test for UTI and other possible causes of this sudden decline, but he was already going downhill, and this may just be his new normal.

The stress for my husband and I has been huge. I spent all day Thursday crying, after a very upsetting phone conversation with my FIL where he barely knew who I was. I just couldn't stop sobbing! It was all the accumulated stress boiling over. Then, I got back to my phone calls. We've both just been feeling completely wrung-out, and of course, that emotional stress resulted in a physical downturn for me, too--I was useless on Friday, and my husband had to get our weekly groceries in addition to his visits to his dad. Luckily, he had the day off work, at least. I am feeling so fragile that I have been avoiding the news and even mainstream social media (my connections in the chronic illness world feel like my only "safe places" right now!) because they just add to the stress and anxiety.

All of this is a long way of telling you that I've been thinking about how we handle stress and was going to write about it today ... then realized I already wrote about this topic in my book! Here is a reprint of the chapter titled Roll with the Punches, which is all about what to do when a crisis hits. You might also be interested in a couple of my recent posts, each of which has lots of tips and ideas: Dealing with STRESS and Coping in a Crisis. I sincerely hope your life is crisis-free right now, but I think we could all use some help with stress!

(Note that this chapter was first published as an article on the ProHealth website on August 26, 2018; it was edited for my book, and this is the edited version.)

Roll with the Punches

We recently had a tough year with a lot of unexpected crises that created emotional stress, financial problems, and the need for fast action. Most significantly, one son was assaulted in Europe and had to return early from a study-abroad program due to a serious concussion. During that trying time, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that so many years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself and having two sons with the same disease, one of whom also battles tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute, couldn’t go to my book club, or had to call off a family trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. For example, when my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we got that unexpected phone call from our younger son in Europe, of course my husband and I were very upset. However, with so much experience with crises under our belts, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to comfort him and to assess his progress (or lack thereof). When it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. He’s never been so grateful! We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to. He told us, though, that his first week there had been amazing; he’d seen and done so many wonderful things and learned a lot.

Within a month, he was almost fully recovered from the concussion. He could think clearly, had returned to normal activities, and his headaches were almost gone. His professor worked with him on an individual project to get credit for the course. Our travel insurance (we never travel without it) came through with reimbursement to us for the outrageously expensive last-minute plane fare soon after.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis.
Here are some tips for when the unexpected happens to you.

Take Time to Grieve
It’s important to acknowledge and feel the raw emotions that come up when something bad happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary.

Start Moving Forward
Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face One Day at a Time
Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today—or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek Support
A few days into the crisis around our son’s concussion while abroad, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured. I knew they would get it, though. And they did. I vented all of my concerns and anxiety to our private group; as always, they responded with compassion and understanding. It was just what I needed. Try to find the right source of support for your situation, whether that’s a friend, support group, or therapist.

Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on—it’s going to be a bumpy ride!

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