The Gulf Stream, by Winslow Homer
Am I the only person who feels like she is in a leaky boat, surrounded by sharks?
Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look at the things that need doing in my life, I begin to wonder how bad it would be to fall overboard.
So in these uncharted waters, I offer you the things that are helping me #Resist, as well as what is helping me #Persist.
We The Resilient, Ernesto Yerena for The Amplifier Foundation
First of all, I basically can’t handle the news. It’s upsetting, and I quickly get sucked into background reading and fact checking. So I am trying to stay informed without getting overwhelmed, and What The Fuck Just Happened Today? helps me do that. It’s a list of what happens each day with links for more information. The only trouble is that it does skew heavily towards the left, and so I know that I am not necessarily getting dispassionate info. There’s always NPR.
I am also trying to broaden my perspective by listening to new (to me) voices. One gem is the See Something, Say Something podcast. It’s an honest examination of being Muslim in America, complete with legal information and Muslim memes. I love it.
I am also drawing courage from other people’s struggles. Crippled Scholar wrote this fabulous piece about why she is not worried about alienating allies. I recently read How to Survive a Plague, the detailed book accompanying the film of the same name. It is inspirational, moving, frustrating and motivating. I highly recommend both the book and the film.
On the ME front, there is this great post about successful “bird dogging,” which is timely in the United States as Senators and Representatives hold town hall meetings in their districts. Johanna Kaiser made these outstanding remarks during the NIH telebriefing on February 1st. Seriously, if you want to get fired up, read/listen to her. Finally, if you need a dose of inspiration, watch Jen Brea’s TED Talk (again).
It is very important to persist, but also to avoid burnout. I see this in my Twitter feed a lot – how to participate in current events while making sure you still take time for self-care. This is especially critical for sick people! Here’s what’s working for me right now:
I periodically check in with myself: have I eaten? do I need pain meds? do I need to lie down? do I need a quieter environment? do I need to turn my phone off?
I make sure I play the cello every day I am physically capable. I am knitting a cashmere shawl for myself. My husband and I are working our way through a series of funny movies.
I’m also much more aware of the importance of art in my daily life, in a variety of forms. I don’t normally use my spoons for museums, but I made an exception this month and was rewarded by The Starry Night over the Rhone at Arles and Water Lilies (Nymphéas). I also just discovered the work of Michael Robinson. In my more natural environment of words and stories, I am loving the Lore podcast. And although my to-read list may soon eclipse my life expectancy, I am eagerly awaiting my copies of The Stars Are Legion by Kameron Hurley, Thunderbird by Chuck Wendig, and Through the Shadowlands by Julie Rehmeyer.
Most of all, I am trying to bring mindfulness and compassion to my day. If I am making coffee, I only make the coffee. I don’t try to take out recycling at the same time. If I am on the phone with a friend, then I focus on that and not on the other things that might distract me. And if I am not able to get something done, even if it desperately needs doing, I am trying not to beat myself up for it.
This is a long haul, and I want to persist.
I find myself needing digital detox and centering on a regular basis these days. Looking forward to checking these out. #Persist2Resist
Yes! Digital detox!
I too can only take current events in little bites. I check in with the headlines about twice a week. I try to be as present as possible, meditate twice daily and I listen/watch Eckhart Tolle YouTube videos to get centered and rooted back in my being. ME is so perpetually overwhelming and frustrating, I have to withdraw and find peace within.
Love this post
Thanks for all the links.
All I want to do, though, is write. It has been a hard winter, and I need to get back, reliably, to my novels, which are MY contribution to the world.
The key is to do SOMETHING FOR THE WORLD along with something for yourself, family, and friends – that hasn’t changed, but only been made more urgent.
This is so true. Doing something for the world is a driving force for me, and I struggle to prioritize some longer horizon projects over the immediate.
Thank you Jennie. A post I needed to read today. 🙂
Thank you for this! I’ve also been struggling. I’m pretty far down and I’ve concluded my energy envelope for thinking about news is 5 minutes/day. And another 5 minutes on Facebook looking only for news of my family and friends. WTF Just Happened Today is a bit much for me, so I subscribed to the NY Times headlines by email. Yesterday I spent 5 extra minutes each on the news and Facebook and I can feel it today. It is indeed one thing to figure out what your limits are and another to learn to keep them. And I have to let go of the powerful Should, to be standing out there somewhere with a sign… Thank you, and commenters, for validation.
Saw this from you Adrienne after i posted a comment too. Mary
The Should Monster is very persistent. I wrestle with it daily.
This is so nice Jenny. Thank you. It also made me smile – wryly – but a smile. Mary uk
Jennie, this is brilliant! Thanks for both the thoughts / encouragement and all the links I now will check out!
Ditto! Thanks, Jennie!
It’s good to do all of this, be mindful of one’s health and needs as well as being committed to advocacy for ME/CFS, etc.
I am at heart a political activist who can’t be active — unless it’s through the Internet, reading, blogging, signing petitions. I tried to go to the Jan. 21 Women’s March in NYC, but I was up all night and go no sleep. I was prepared with a sign on health care, had my clothes and snacks ready, but no luck. The morning rolled around and I had not slept at all.
I was so disappointed. What kept me going was watching some of it on TV and hearing what friends experienced. And then reading the international news on protests in other countries. So inspiring.
Thank you for the WTF Happened Today website. It’s great. And thanks for the reminder on the book How to Survive a Plague. I have heard of it, but not read it. Now I’m looking at the library catalogue to find it and reserve. Lots of valuable lessons out of that movement — and it was successful.
You have so much good information in this post. I’m going to highlight all of the sources.
I watch TV a lot, but much of it is news, and I read the New York Times, but not all of it, what I prioritize. And I watch political comedy, very important to me to be able to laugh despite the anguish going on which pains me — about immigrants, Muslims, the attacks on the Affordable Care Act and more.
And I watch movies from either Netflix or the library. I read good blogs, including this one. But I also read mysteries and follow blogs by writers or readers. That is my diversion from the news. A good book is uplifting.
I also play with neighbors’ dogs, go out and get snacks and pet dogs on the block. This is a stress reliever, too.
And when I feel like I’m not doing enough, I try to put all in perspective. As Katrina Berne said on her blog years ago, only compare your days to days while you were ill, not before that. And she also said to be kind to yourself about productivity: Some days you can do more, others days feel you were productive if you made lunch. Amen!
I’m not good at applying that lesson. Having had a bad day today, I got a burst of energy for a short time and cleaned my floors (lightly). Had eaten chocolate which always gives me energy spurts and got one thing done today. It’s OK.
We all have to be kind to ourselves. That is so important.
Thank you Jennie for this informative post and for being so honest about how you’re coping not just with ME but with the new administration in Washington. It was extremely helpful. I read the headlines at Google News to stay informed (I get the headline and the first paragraph of the story…and that’s usually enough). I have to set it to “Classic Style” to get it in that format. Now I have to discipline myself not to check it quite so often. My husband said to me last night: “You live where your attention is.” That’s been food for thought for me ever since and I’m taking it to heart regarding the current political climate.
Jenny I am new to your blog and am still trying to figure out how to live a life defined by the constraints of my illnesses: ME/CFS and Dercum’s Disease. I found your blog in December by googling “CPET and heart rate monitor” after I learned through a CPET test that I should keep my heartrate under 100 bpm–WTF? I feel like I’ve been put into an even tighter straightjacket than my illnesses have me in already. The detailed account of your experiences with this have been so helpful.
This post is amazing. I am following up with every link! You are such an inspiration to me. I am currently taking the introductory class at http://www.cfidsselfhelp.org to learn about life management strategies. Toni Bernard’s book, “How to Be Sick” was life-changing–the bitterness at being chronically ill is now (mostly) gratitude for the things that I have and can do. After decades working at high-tech companies in the Silicon Valley as a technical editor, I am now on disability (as of Friday!) and am often bedridden. But I still forget that I can’t do the things I want to do. I rallied some friends to go to the Women’s March in San Jose, then realized that there was no way I could actually march in my condition. Instead, I put together two of my friends who didn’t know each other and had no one to go with, and I offered to make posters and give them rides to public transportation as my contribution. My 25-year old daughter went to both the Oakland and the San Francisco marches, and she gave me her pussy hat afterwards. 🙂
I took a “mindfulness-based stress reduction” class years a few years back and learned the practices of meditation and mindfulness. I still struggle with it. I became so ADD after years as a waay too busy working parent struggling to juggle it all. I thought multitasking was what I was supposed to be doing. In didn’t know it was ruining my brain. I agree that the news bombardment is especially draining. The New York Times and NPR are my staples. I was a communications major in college, before the internet changed everything, and I’m constantly astounded by how much communication shapes our world now. The fact that one powerful lunatic’s middle-of-the-night tweet rants can cause our stock markets to soar or dive, influencing the fate of entire industries, is terrifying.
Stopping now! Thank you again Jenny for all these great links, your inspiring and educational blog, and for all the hard work you are doing as a advocate!
Linda
Welcome, Linda! Although I definitely wish you were not part of the ME club.
I completely understand what you mean about keeping your heart rate under 100bpm. My heart rate monitor alarm was set to 95bpm for a long time. I’ve collected all my posts about exercise testing and using a heart rate monitor here:
http://occupyme.net/exercise-testing-and-results/
I am so glad you are taking the CFIDS Self Help course. It is excellent, as is Toni’s book. Here is a piece I wrote on her most recent book, and it has links to my other posts about Toni’s work.
http://occupyme.net/2015/12/04/saying-no/
Keep on keeping on!
Welcome, Linda, to a club in which we all didn’t wish we were members, but it does help to be on blogs and in other communication with people with ME/CFS.
I think what you did for the Women’s March was a very good contribution. Providing rides to two people to attend and making posters is a lot more than I did. And your daughter went, too, so you were well-represented.
I was heart-broken that I could not go. I’ve supported women’s activities for decades. I brought a sign home supporting health care for all and had my clothes and everything ready, and planned to meet friends near the gathering site in NYC.
But then I was up all night, had no sleep, and the morning rolled around and I could barely get to the bathroom.
So I knew I couldn’t stand up for hours. It turns out friends were stuck in one place for hours and couldn’t even move. I couldn’t have done it.
This disease presents so many limitations that we constantly have to deal with and no matter how long we’ve had it, disappointments still happen. We all want to be active participants in our lives and have to constantly readjust as to how we can still keep a hand in. I ended up sending donations to national women’s organizations, including N.O.W.
Hello, I found your blog from a link on Minnesota Public Radio. So glad to find that I am not alone.