from The Oatmeal
I have reached a new low in life with ME. I call it: The Wall of Nope.
The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things.
Here’s an example: I’m talking to a friend on the phone, and another call beeps in. I check the voicemail after finishing my call and even though I physically have the energy to return the call, I suddenly hit the Wall of Nope and don’t do it.
On another day, I don’t use my computer, which usually means I can make a simple dinner. But when I walk into the kitchen, I feel an intense desire to never cook again as long as I live.
Reply to an email? Order groceries? Read the news? Check Twitter? Put away clean laundry? Pay a bill? Do something big? Do something small? Nope. Nope. NOPE.
The physical limitations of ME can certainly contribute to hitting the Wall of Nope. But the Wall of Nope is really more of an emotional experience. Or a motivational experience, as in: I have none left.
That is what is new about this. I hit plenty of walls with ME, repeatedly and regularly. But the Wall of Nope is the point where I have lost all capacity for motivation. I’ve never experienced this before. I have always, throughout my life, been able to summon the will and motivation to keep going, to try again, to try differently. If someone needed me, I could dig deep and at least lend an ear. I wanted to be the kind of person who does that. I wanted to be the kind of person who has a tidy house, fulfills social obligations, and stays on top of paperwork.
Nope. Not anymore. Maybe it’s because I have so much to deal with now that I have reached the point where I can’t. And before anyone asks, I know it’s not depression because I have plenty of motivation to do things like practice cello or knit. I will gladly listen to the Elgar Cello Concerto for the eleventybillionth time. Or sit and drink a cup of coffee with enthusiasm until the cows come home.
But for everything else, there is just a point at which I can. not. deal. The errand that needs running? The food that needs cooking? The ringing phone? The advocacy project that needs analysis? Anything beyond the Wall of Nope is just too bad because I can no longer force myself to do the necessary or responsible thing.
Nope.
Nope.
I know that wall so well…. sorry you know it too.
Oh yes oh yes oh yes. I love the term ‘wall of nope’. I’ve been calling my nope times ‘duvet days’ because I don’t get dressed, but I think ‘wall of nope’ days is better. I think perhaps it’s part of the listening to your body pacing thing. We need to listen to our ‘nope wall’ too and give ourselves permission to obey it and not feel guilty for the things left undone. Be kind to yourself, enjoy the Elgar.
Duvet Day sounds pillowy and gentle, and actually kind of appealing. I like Wall of Nope for myself because it’s hard sounding. And it smacks me out of nowhere sometimes. It’s different from a crash day, where I wake up and know nothing will be happening besides making cups of tea. This is more cognitive/emotional than physical. I think there might be a lot to think about here. Duvet Day gives me the image of gentleness and healing. Crash and Wall of Nope is more violent; and perhaps I need to take a more gentle approach with myself.
Everything is such a struggle sometimes. I understand, because I’m going through the same thing.
It has helped to get an assistant (if you can afford one), but I have this lump in my stomach every time she comes, even though she is lovely and helpful: Now I have to DO things I don’t WANT to do. And it is exhausting, too, to come up with stuff for her to do each time, but I’m slowly getting at some of those dejunking and organizing and cleaning things that have been weighing on my shoulders for years.
But I don’t wanna, and I dread her coming.
All I want to do is write, and life interferes every frigging day.
Is there anything I can do to be more supportive? Email me if you need to vent.
You are very supportive, Alicia! I dream of being able to hire a personal assistant. How did you find yours? Apart from the cost, I have always assumed it would be hard to find someone who didn’t need a lot of supervision and training.
I have had an asst for a year now. She came into our lives because she worked for neighbors. My husband had had a heart attack so the neighbors asked if we wanted to meet her. Word of mouth did it for us. We began with a six week trial, although I knew we’d hire her for as long as could after the first half hour. Her qualifications are that she’d rather be busy than not busy. She’s had a wide variety of jobs while raising children, from bookkeeping to landscaping. She quickly sees things that need to be done. Works great independently. Down to earth. I write these because I don’t know if I would have realized before hiring her that in many ways she’s who I used to be before getting sick.
I’m picturing a bounding llama. I think NOPE is a perfectly rational and healthy response at times. Don’t let yourself feel guilty about it.
Ha! I link to the bounding llama just above. The first “Nope.” link goes there. Warning to everyone else: those two Nopes link to vidios with some NSFW language.
So true ! So many things i must and want to do but the wall of nope is so high
High. Oh so high. And very hard.
Jennie, I think we all hear you. You are certainly entitled to feel this way. Please give yourself a big hug from me. Then go listen to music for the rest of the week!
And if it makes you feel better, I am very grateful for all your work on behalf of all ME/CFS patients and their loved ones.
In compassion and gratitude,
Diane
Thank you, Diane.
And that’s ok! You re already coping with more than the well person can handle ! ❤️
I calĺ them Zombie Days because inside, I’m just not there. I stay in my pajamas and read and have a cup of tea – nothing else. I think they’re harder on me than physical crash days because the guilt tries to creep in. You’re definitely not alone! Be gentle with yourself, and take care.
Oh the guilt…even after 4 years the guilt can attack you with out warning.
I think its due to the fact I juggled so many things in my pre ME days. Not all of them where achieved but the fact I was even thinking about doing them meant I had to plan and try to achieve them . Now even thinking of more than one thing at a time can be too much !
I’m right there with you, sitting at the base of the Wall of Nope! Perhaps we should allow ourselves a few days of saying nope without guilt. For me, arrival at the wall coincides with a physical lessening, not a crash per se, but a diminishment that can precede a crash. Thank you for describing so well what many of us feel. Take care of yourself, and just say nope. It’s ok.
Actually you described it very well!! Not a crash but a diminishment. I love that.
Oh yes, I totally relate to the wall of Nope and I do find it distressing to lose motivation…feels a bit like I’ve given up. My overriding feeling on Nope days is that I only want to do exactly what I want and what I enjoy, not what I have to do. Maybe like others have said, it would be good for us to go with it for a while.
Maybe it’s a bit of escapism that we all deserve. x
YES. I only want to do what I want to do!!! And for the first time in my life, what I want to do no linger includes what I need to do. Obligations are no longer on my want to do list.
So appreciate you sharing this! The wall of nope for me, many times comes with a numbness and a sark reality of what this life has come to.
So many dreams trapped on the other side of the wall of nope.
Selling off items that were the tools to the dreams due to the mold and the emotional stipping is just deflating.
Wondering if I am lightening up the load of personal items to make it easier on my husband and that I will be going to a place much easier and without effort. Or maybe just in the ground to be bug food.
Does any one else watch the energy window continue to get smaller and wonder if my body will just not have the fuel to keep things going?
Yes! Watching the energy window shrinking, wondering if my body will just not have the fuel to keep things going. Absolutely yes…
And reality of what life has come to, selling off items that were tools to the dream. Well said Bazia!
I can relate too to Jennie’s Wall of Nope as it feels like I’ve turned a corner lately and she described it.
Well, you nailed this one for sure. I’d have to say I’m experiencing this to some degree as well and it is definitely a result of overload, emotional and physical. As you know, our lives have had some unfortunate parallels lately, and the responsibilities that came with all those stressors have certainly led me to the “Wall of Nope”. It’s an unusual and unsettling feeling for me too, as I’ve always been a doer, the one who stays optimistic in the face of challenge, and who is first to find a solution to a problem and gets right to work. Now I find myself letting things go, including my own hygiene, which has at times disgusted me. There has always been juggling with ME/CFS, choosing certain things that had to be done and forfeiting others, but with all the added responsibilities now I have reached a point where I must choose what activities I’ll do, and that forces more things to be moved to the “list of the sacrificed”.
I have to believe that this is a phase that came to me with all the 2015-2017 junk that’s been dumped on me, and that whenever I emerge from the other side of this I’ll return to my former motivated self. But if not, the world won’t end if my laundry stays folded in a laundry basket until I wear it. Right?
Thanks for sharing this very personal experience Jennie!
Claudia, we have indeed walked similar paths since 2015. Sometimes it feels like we have pulled ourselves along that path with claw-like hands.
I share your belief and hope that this is a phase for us, caused by the extraordinary life stresses we are dealing with right now. For me, it’s been an object lesson in recognizing the role obligation has played in my choices up until now. Hopefully, I’ll emerge with a healthier approach to obligations and a renewed desire/ability to fill some of them.
I thought I was the only one who felt like this! I have nope days, too. Nope, not returning the call. Nope, not doing the laundry. Nope, not making dinner. Nope, I just don’t care or have the energy. If I have any energy, I want to spend it on fun things…not the have to things. Thank you so much for sharing and for being an advocate for all of us!
I thought I was the only one!!!! I’m glad I am not alone, but sorry you are in the Nope club. Toni Bernhard suggested on Facebook that we turn Nope into a verb, as in: Today is a noping day. I love that.
Jennie, this is perfectly understandable considering the sneaky elements of this disease. You characterize this perfectly. But I would add that while there may be stretches of this aspect of our illness, this too shall likely pass. Your hope, your will, your desire is in there. But it is perfectly okay to recognized that we can’t always summon it. This is a systemic condition, so that means that at times, our brains need a rest, and a good long one, at that. I think Nope is our brain saying, time to rest for as long as I need because I don’t know how else to tell you that I need to recharge. Love and hugs to you. Thank you for your usual wonderful articulation of what we are all feeling.
I have those days, too. It’s hard to allow oneself to have Nope days when the underlying problem you’ve put so much effort into solving continues and there’s always more that can be done to stop it.
When Nope days come, they seem akin to waking up in the morning with your soul telling you that it’s imperative you find self-preserving peace of mind — while ignoring the elephant sitting on your head.
Some days (weeks) you have to do it or you will not be good for anyone — including yourself.
Jennie–a terrific blog–and so typical of you–confronted by that wall, what do you do? Retire to bed and mope? Nope, you write a great blog that nails down perfectly one major aspect of our lives. “Executive function,” I think they call it. You still have some, whether you want to admit it or not.
And just as a suggestion, in place of the next audition of the Elgar, give the Finzi cello concerto a try–just as a change, not a replacement. Sometimes a small change can help? Anyway, take a more than deserved rest–or “rest and recreation”–no-one deserves that better than you!
“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
Rainer Maria Rilke, 1903
in Letters to a Young Poet
Love Nope!! I often find myself in this state because my brain and/or mind is tired. I had a friend years ago who had a sign that said “Kitchen is now closed.” Each evening after dinner was over and the kitchen cleaned, the sign would appear. When I can’t think anymore, I often remember this sign, only mine reads, “Your brain is now resting.” And that’s what I let it do.
If the medical community were dispensing seriously appropriate advice to ME/CFS patients, we wouldn’t be experiencing such confusing emotions over saying “nope.” Instead, nope would be the very foundation of our treatment plans and goals. Nope would be the combined big-picture plan we and our physicians would discuss to map out as positive an outcome as possible. A prolonged nope now, should be part and parcel of a hope for a more nope-free future……
But the world government is still clinging to their criminal mindset of letting the public think that ME/CFS/LYME/GWS/ETC. patients who claim the ravages of this disease have made a “lifestyle choice” – notwithstanding Naviaux’s and the Australians’ and the Japanese’s findings. Because of this, the fundamental aspect of mentally and emotionally coming to terms with the fact that we are so sick that we need to treat our minds and bodies as if we are as delicate as post-op patients is very difficult for us. I’ve found it helps to just let go of most everything – just done done done with things that have the capacity to throw my body into another dimension of disability (like even turning the phone ringer on so I’m not vulnerable to all the things being tied to a telephone entails).
So sorry! I totally understand. Thinking of you!
So timely, so helpful! This week is the first time I’ve really experienced The Wall of Nope, though I’m just today learning from you what it is. I needed this “permission:” to understand, and to be understood.
It is scary. In “just” a crash, I’d “want to do.” At least the bare minimum. This is loss of momentum on a deeper level. There’s the wondering: will it return, and if not what then?
Thank you, all, for this depth of understanding.
Oh. my. gosh…and then you have the motivation to write such a special blog!
I find the past year with the election has propelled me to a complete stop. I have no will, no motivation, and along with it a blank brain. I can’t even feel easily! Now, of course the holidays are here, and despite all warnings to the contrary, we think we have to DO something about them. I have chosen to let my kids do that something…except for throwing a ham into the oven. Everything else can be done by them and at one of their houses. I can’t bring myself to even hang the wreath on the door.
Nope to sorting out my office. Nope to dusting. Nope to laundry today. Nope to hearing the phone ring, and hope to not have to take the call because it’s another family matter that must be dealt with immediately.
I will probably get an adrenaline rush and end up doing too much all at once, to make sure I’m not buried in Nopes. Then, the crash. After 28 years, I never learn. That’s another Nope.
Thank you for all your work, Jennie; it is never something I say “Nope” to! Hugs galore, and calm, happy holidays to you and your loved ones.
Sorry you’ve hit the Wall of Nope. Thanks for describing it so well. I hope it’s temporary and you can take a few weeks to rest up and feel more able to function. This has been an awful year for many reasons, and this is always a dreary time of year here in Ohio where we don’t see much sun from November until March. I put a decorative bright light in my living room every night from the day we go off daylight saving time until we go back on again. That helps me.
I’ve been learning over the last 32 and a half years how many things you can leave undone. Next week, I’m going to get somebody to help me wrestle sheets off the waterbed and back on, which I haven’t done since March. That’s only one of a long list of things I’ve said Nope to.
I ran onto this motto years ago, and I’ve printed it out and stuck in inside one of my kitchen cabinet doors: “A Clean House Is A Sign of A Wasted Life.”
I read a novel that began with a description of an artist who was getting her one-person show after many years of work. She was hesitating outside the door to the gallery, not sure whether she was going to faint, vomit, or wet her pants, when a friend came and put an arm around her and said, “At least you’re not on fire.” That’s inside another cupboard door.
I hope the Wall of Nope will fall, or get lower, or move farther away. But you will go on living if you don’t do those impossible things. And your life will always be meaningful, regardless of what you do or don’t do. You ARE, whether you DO or not. I’m grateful that you ARE.
Thank you so much for sharing that, and thanks to all those who have responded. We’re all real people with real lives, and our lives are all worthwhile, regardless of what we do or don’t do. Love to all of you.
Thank you deeply, Linda.
I hear you. I feel like I’ve been on strike for the past year and a half. Many things have gone undone or got done late and the world did not end. Having a track record of being responsible before my “nope” period helped. And, I’m glad to report, I seem to be getting my motivation to be a responsible adult back. I think I simply needed this time off. It sounds like you do, too. Hang in there!
The wall of Nope is such a useful expression. I think it might be the brain constructiong a barrier, telling us that if we force ourselves over this wall, we will end up in the deep well of depression, which is where I am now.
I personally was diagnosed with depression several years back, prior to what I acknowledge as the onset of my ME/CFS. They never were able to fix it, it was intense and it lasted for years with no let up and randomly after my ME/CFS + other illnesses got worse recently, it just sort of evaporated for the most part.
During all that time I actually rarely, if ever had an issue with motivation. To everyone watching me I think I was a highly driven, intense, determined individual. While depression effects everyone differently, just because one looks like they have depression (I had it for almost my whole life and no one *knew* but people I let know so, that just figures.) doesn’t mean that’s what is going on.
All feelings don’t have to be pathological or disordered. Sometimes feelings, and “effort fatigue” in some cases, are things everyone feels. People who are chronically ill are no exception to that, regardless of what they have. And I don’t blame anyone for it. I think people have an over-tendency to “diagnose” normal emotions as mental illness in people in tough situations. Yes sometimes one is going on, but sometimes it isn’t.
I do understand the “wall of nope.” And “a whole other level of done-ness” (pre-crash feeling I see a crash coming within a few minutes/seconds.) as well.
It sometimes feel like being sick is a full-time job, even if you aren’t putting yourself out there, I think all ME/CFS patients who know they are balance the job of activist with the job of patient and the jobs of normal life: child, parent, fur-parent, actual jobs/careers, volunteering, friend, educator, etc.
Just my 2 cents. 🙂
I totally understand the Wall of Nope. I say this to myself as I eat easy comfort foods rather than preparing a healthy meal which takes work. I say this as I don’t do the laundry for another day and then another. I say this as I rinse out my clothes in the bathroom sink and hang them up to dry as the easiest method to clean them.
I say this as I do not dust or sponge mop the floors. I say this as I pay my bills late.
As I don’t return my library books on time if I can’t help it.
And it’s totally understandable. What scares me was what happened the other day when after working on rewriting and editing a friend’s essay which turned into three days of work I suddenly felt like I couldn’t organize food for myself. That I hit a brick wall. Then I just ate cereal and said it was OK.
A friend of mine told me years ago, an aging friend, before I was sick, that housework was the last priority of anyone with a lot to do. And I concur.
Usually I just watch TV and read when I get to this point. But I understand it and it’s justifiable. We expect too much of ourselves and compare ourselves to what we could do before we got sick. And we can’t do that to ourselves.
Sometimes just getting one meal organized is all we can do in a day — and that’s OK.
Be kind to yourself and congratulate yourself on what you do and can do. Do nice things for yourself and let other stuff go by the wayside and wait.
Yup. Got fibro. Lotsa nope.
Jennie,
Until this post, I had never heard Elgar’s Cello Concerto, or knew Jacqueline du Pre’s brilliant and brief career. Thank you.
You are so welcome! I just learned about her (and the Elgar) a month ago, and I was like “How have I never heard of her?” She was extraordinary.
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