Life with ME/CFS is all about limits. Physical. Mental. Emotional. It’s like living in a glass box that remains far too small, no matter how much you practice acceptance or positive thinking. And the torture of it is that since the walls are glass, you can see everything you used to be able to do/handle/tolerate.
Physical limits are the easiest to see and delineate. How many steps I can take, at once and in a day. How long I can stand. How long I can sit upright. How many times a week I can cook. How many times I can leave the house. How many doctor appointments I can handle. How much I can carry. How high my heart rate should go. How much sleep I need.
Mental limits are harder to see, but I can still describe the edges. How much noise I can tolerate. How many conversations I can follow. How long I can use the computer. How much I can read. How much I can write. How long I can think critically or strategically. How long I can listen to music or watch tv. How long I can talk on the phone. How often I can blog.
Then there are the intangible emotional limits. Like how much pain I can tolerate. How much Facebook advocacy drama I can tolerate. How much bad news I can take.
What is striking about these limits is that there is an overall fixed capacity. If I’m more physically active, I can’t read or write as much. If I’m under a lot of stress, my physical capacity disappears. And every. single. thing. adds up.
Take Twitter. I love Twitter for entertainment and news. I’ve met wonderful people through Twitter. Twitter is better than Facebook (at least for me). I’ve always been limited in the number of people I can follow, or how often I can check it in a day. But now I’m running up against a new Twitter limit: how much I can handle emotionally.
Every time I check Twitter, I am hit with bad news. Gaza. Michael Brown. Robin Williams. And then there is the fact that people seem meaner these days. Prejudice. Criticism. Waves of people Tweeting about racism or misogyny that they’ve experienced. I already don’t watch tv news because it made me mad. Even The Daily Show was upsetting me. If 9/11 happened now, I doubt I could handle the news coverage.
Maybe it’s because I’ve had so much personal bad news in the last two years. Or maybe it’s because my advocacy efforts (and accompanying stress and frustration) have increased. Whatever the reason, I’ve got almost no capacity left for emotional load. Most nights, I space out to a baseball game, awaiting my next scheduled pain med, and there is NOTHING left over – no capacity of any kind. And that’s not good. It means I’m less available to my friends and family. It means I’m out of balance.
I can tell when I’ve exceeded my emotional capacity. I lose my patience. Small frustrations make me very angry. My initial reaction to news, questions or problems tends to be knee-jerk anger or resentment. I curse more (and more creatively), to be honest.
But if I have learned anything during my years with ME/CFS, it is that the boundaries of my limits are out of my control. There is a maximum capacity, and if I exceed it then I pay the price in pain and even less capacity. The only thing I have some control over is what fits in the glass box. That box is only so big, and I can only cram so much in. It comes down to choices – what goes in, and what gets left behind.
You’ve probably already read this, but it’s worth repeating: The Spoon Theory by Christine Miserandino.
Update August 14, 2014: Tracey Tempel Smith wrote this beautiful piece after reading my blog post. She has graciously given me permission to reprint it here. I hope you find it as powerful as I did.
Glass Box: A Life Confined by M.E.
This is inspired by Jennifer Spotila’s post that describes trying to balance life/health while dealing with the restrictions/confinement caused by Myalgic Encephalomyelitis. She sees it as living in a glass box, a life limited. I agree, and this is what it feels to me right now:
I am having a chance to slowly stretch my box. It is like a process knowing if you put too much inside, cracks start to form. But if you are allowed to lessen the amount in hopes that tiny bits of excess energy builds over months; the warmth starts to soften the glass, to stretch a little. Like a glass blower.
When excess energy runs out, the heat dissipates, glass may cool too quickly, hardens, and cracks form. Then you have to stop, if not the PENE shatters your box and it reforms smaller… Never knowing how small that box will shrink. It is a very subtle process because we can’t always hear the beginning cracks forming, and stop in time before destruction happens.
Sometimes the cracks start slow; sometimes it’s a sudden explosion where you can loose pieces of glass forever. But the glass will always be there in varying degrees of thickness and size. And during this time, in this glass box, there are times where objects outside are thrown at it, and you can’t move the box out of the way. A sitting target, stuck in the shattered pieces, hoping that healing will happen.
To those outside, glass will seem invisible from some perspectives, but just change a viewpoint and the edges of the box appear. Get close and reach out, and touch it, then understand by imagining how it feels to the one surrounded by it.
Some remain so close, the glass is invisible but if they don’t attempt to reach out they won’t feel the glass. They remain in complete disbelief the glass even exists.
Spot on, as they say. Thanks for articulating what I have been unable to.
I identified with every word of this, Jennie. It all seems overwhelming right now. There is comfort in knowing mine is not a unique experience. Thank you for this honest and insightful post.
Good post, Jennie! Thank you! — Dave
Thank you so much for saying this as you have done. I relate to every word of your post. And now I’m thinking about what you’ve said.
After 28 years with this disease, I still can’t figure out my limits. I did some computer work for two days, and everything takes me so long to do. Then I sent out a few emails today, walked 3 blocks to the post office and back. Have to go back out to the drugstore a few blocks away, but I’m wiped out already. No get-up and go left.
And what upsets me a lot is that I’m a reader, especially of mysteries. I have read a certain number of books a year, but in June I read one book, and so, too, in July, where usually I’ve read six. That is because I have watched TV more at night, but do not have energy to read. My eye muscles get tireder more quickly. I read 10 pages and I feel tired, whereas I could read 50-100 pages a night.
And, yes, the news in Gaza, Iraq, Michael Brown, Robin Williams, etc., tires me out. I stopped reading the NY Times articles on war as I couldn’t take it in any more. I find myself protecting myself from the worst news and going to lighter websites to discuss books.
And while I was on a roll to take care of medical and dental issues I’d neglected, I lost the energy to keep it up — and I have to. There are appointments I must make and go to. I keep cancelling my mammogram because I don’t have the energy to go nor to hold up my arms, nor to change clothes and wait for 20 minutes at either end of the test. And it’s several blocks away; often I take a cab but the thought of the steps involved in all of this make it seem daunting. (This is nuts; close relatives had breast cancer, but it seems overwhelming to do the work.)
So, I am still figuring out what to do. I’ve been phoning in part of my life. At times, I still resent that I can’t participate in things that are meaningful to me, including activism. I want to be at events, but instead I see them on TV or online. I have to keep telling myself it’s OK to watch, but that is maddening again.
And some friends still don’t get it. One person got angry because I couldn’t call her back to say I couldn’t do something; I had to email. Just didn’t have the energy to talk, especially to someone stressed and yelling.
I can’t help a neighbor with pets while she’s on vacation, which I’ve always done.
So, a lot is changing once again. More adjustments. More acceptance of myself is needed, trying not to be angry at myself or at others.
And patience! Where has mine gone? It’s vanished into the air. I rarely have it. So I avoid stressful people or situations because I have little resilience to deal.
I’m going to print out your message, circle key points and look at it when needed.
I wish someone had the answers on how to cope, as even after all this time, I’m still
learning and adjusting.
I don’t think there are any easy answers to coping. At least, I haven’t found any. Toni Bernhard’s books have been a balm for me, but even she would say that it requires constant practice. I’ve tried to ask myself, at least more recently, what would reduce suffering? Is there something I can give up or not do that would ease my suffering? Is there something I can do to ease someone else’s? If I have an obligation to do something (like two doctor appointments next week – gasp!), then what will make it easier, or at least easier to bear?
And I know it’s so hard to go to an appointment when it’s a struggle to just get dressed. But please GET YOUR MAMMOGRAM! It makes a difference. I say that from personal experience.
So fluidly, accurately expressed. I too identified with nearly all of it. I wish I had read it before it took me hours (hours!) to write an email to a friend (who knows I’m sick but who I haven’t been in touch with for a while, and who doesn’t know what my daily reality is really like) who asked the benign question “how are you?”
Best post yet. And oh, so true.
Ya–I find that question — ‘How are you?’ — to be such a loaded question. To those that know me/I know well–I might say exactly that–‘That’s a loaded question’ with a little chuckle. Typically now, I say ‘I am.’
I really DISlike that question–it is VERY awkward to answer! People don’t want to hear our AUTHENTIC answer–because it makes them uncomfortable–they don’t know how to deal with it.
How are you? — This is also very much a social question–and not necessarily a question that healthy people are prepared to hear the answer to as far as ONgoing disease. For the most part, people really just would like to hear–ohh, fine–ohhh, great–OK (what the heck does OK mean–that is relative to this disease and means CRAPPY–that is constant and doesn’t change–except worse with PEM/PENE!!)
People are ill-prepared / ill-equipped to hear the truth; they cannot relate to a never-ending horrid illness that does NOT go away–and for which there are NO BIO treatments–a disease that has been slandered for decades as to the BIO truth and facts. AND at some point–from their own experiences with illness–others are EXPECTING an answer like–‘ohhh–feeling better.’
Welllllll–we would like nothing better than to be answering with ‘feeling better.’ NOT possible, however, with NOTHING in the way of BIO treatment to correct! So the status quo remains for the millions of us struck down with ME/CFS–our lives stolen from us.
How am I–really ?? I am crappy–and this is EVERY day–body always feels very UNwell/sick–like being poisoned, etc.–locked into this horrid disease ad nauseum. This disease is very limiting and life-restricting. AND, this just doesn’t ‘jive’ with normal daily living and living life fully with limitless choices that others can relate to in living daily life and generally life at large.
I quickly developed the habit of answering “Fine!” because I knew people didn’t really want to hear how I was feeling. But people who know me well can decode my tone of voice. I have a particular sing-song “Fine!” which actually means “Terrible!” but you have to know what to listen for.
One of my most used come-backs when I get the “How are you?” question is to reply that I’m breathing air. Every day I just breath air. The problem with living in a glass box is that the air can get so very stale!
I think that one of the things that drives advocates is trying to get people to SEE us crouched in these boxes loosing our lives as the days pass by. To get them to realize that the glass is THERE and try to do something about it. Get us some ventilation at least; a few breathing holes or a little more wiggle room. We need to have some hope that our society and government or at least our physicians will SEE the box and understand that it’s a cage, and make some serious attempts to get us out or at least get us a bit of fresh air; some hope of rescue. The scary thing is that we are so limited in the energy we can expend tapping on the glass trying to get attention. The box is always waiting to clamp down harder at the signs of vigorous escape. It’s a razor edge, knowing the correct balance of being gentle with ourselves, living in the moment, practicing gratitude etc., and trying with all our limited might to try to make things better for ourselves and everyone else who is locked away loosing huge amounts of their life trapped in glass boxes.
Thanks for being a fighter Jennie, don’t wear yourself out- so many are inspired by your skill and tenacity.
Yes, the air gets stale!!!! Brilliant!
People think and hope for us that there will be a ‘change for the better’ . . .
We just can’t deliver on that–not even after all these years–HHS has stuck us into ME/CFS — with NO BIO treatments.
We are fighting 30 years later for justice for the millions of us and for BIO treatments so that we can be more functional and LIVE our lives–and we know that IOM and P2P are NOT the answers to help us–IOM & P2P are the antithesis of aid to ME/CFS patients.
We don’t want the next generation LEFT and kicked to the curb either!!
My complete gratitude to Jennie and everyone that left a comment. This should be required reading for all medical students.
Articulated with amazing accuracy of a life with ME.
Thank you for writing this! The timing in regards to my own life of cancellations, unmet basic chores, raising children on empty. Grateful to all! Thanks for the honesty!
Gina
Such a great analogy, Jennie. It’s also glass because we get watched, but the glass must be bubbled in places. Doctor writes “neatly dressed” and “using full sentences” in the chart, but sees only bits and pieces. And is evidently unaware of the effort that took.
I do understand the stress limiting. I shut off facebook, and sometimes Twitter, because of stressful things mentioned. But at the same time, I want to help if I can, same as you said. It’s difficult to balance everything.
Answering ‘how are you’ is difficult. I often say that I’m ‘here’. Some people understand, some think it’s weird, some ask. (When I was a bit better than now, I used to say, “on my feet”, which most people found socially acceptable, though they might do a double take; but someone who really wanted to know said: “This table is on its feet! Please tell me what you mean.”) If I don’t want to discuss it or if I think they don’t, or it’s not a good time because of the venue or something like that, or if I’m at my current baseline and not too uncomfortable, then I may say fine or ok.
Best wishes, Jennie. Take care of yourself.
Thanks, Jennie, true enough. Have to get a mammogram. This is one thing I have done yearly, but one still has to hold one’s arms up and I can’t do it now. I have breast cancer in my immediate family, so I get the necessity of doing this annually.
I have given up a lot as have the entire group of ME/CFS sufferers. It’s now what do I give up again. I live my life pacing myself. I used to get meals delivered often, especially during the winter when I was further disabled by a broken arm, but the take-out place I called has changed into a bar/restaurant. So, I have to continually go out and buy food. Often I can’t go to the store I want to go to as it’s across a bad main street, full of potholes, which I avoid when I’m wiped out — fear of falling, breaking a bone, not being alert.
So the constant food/water purchasing is wiping me out even more. I know this is a problem everyone wrestles with. And it’s hard for me to cook, so I buy food I can just grab with the least amount of work.
So, it’s readjustment. It’s still a daily thing, and I think as I age, my stamina has lessened.
That makes me feel better to read: Cancellations, leaving basic tasks undone, running on empty — all true. I’ll add that I phone in some of my life, or email it in.
Some of these reflections make me laugh: Sometimes my clothes are a bit wrinkled when I have to go somewhere, although I try my best. Recognizing reality, I threw out my ironing board 15 years ago. I still have my iron, although I never use it. I smile when I see it in the cabinet unused.
so, with all this disappointment, sometimes humor pops up. And, darn it, if I want to eat chocolate frozen yogurt for dinner as it’s easiest, why not?
So accurately depicted! Thanks a lot!!
@Ess
When asked how are you, I skip the question and just say: and you?
@Cheshire
Thank you, Cheshire–that’s a good one!!! . . . ‘over to you.’ 🙂
Great analogy/metaphor, Jennie. So very true. I came to your website today needing encouragement from “my people,” and here it is. Understanding, empathy, compassion.
I had a doctor visit today, with a nurse practitioner who is not dismissive. He was great listener and is doing what he can within a system that doesn’t offer much. I should feel so good about that, and on some level I do, but I felt badly that I needed such a long appointment, knowing that keeping him so long effected many patients to follow me. I came home sad that the best of appointments in our circumstances still requires a week of prep of the scientific studies that relate to how ME/CFS is now presenting in me, and that the many great studies over decades have not translated into care that would make such appointments easy. Routine.
I don’t know if it’s true but it seems that people, doctors included, think that it should be okay with me by now that I have this disabling condition, like What’s all the fuss about, you know you’re sick? Is that just part of being a middle aged woman, too–marginalized? Yes, I have made peace with much of the loss, but if the picture just looks peaceful, who will help the situation to change? I am very thankful that my life has so much ease compared to others whose suffering and losses are greater, but does that mean my loss is insignificant?
The “how are you” question throws me too. My usual response is “I’m having a good day today,” because I must be having some kind of good day in order to encounter someone at all. It means that I’ve left my house, whether I feel up to doing so or not, even if just to walk to the mail box. The hardest question for me is, on those rare occasions that I’m in a group, like a wedding reception or birthday party, is: “So, what do you do?”
Ah yes, the dreaded “what do you do?” question. I have gotten to the point where I say, “I’m disabled,” and then explain very very briefly, finishing up with “so now I’m a writer and advocate for people with this disease.” I have stopped worrying about making other people uncomfortable with it.
I think that is a brilliant response, Jennie, to the question of “what do you do?” Being an advocate and writer for people with this disease is a very noble thing to do, and it should be recognized by those to whom you give this reply.
Boy can I relate. Brilliant analogies. TY for sharing. In healing and hope that our inner glass blower sends us ample warning signs and advanced notice. In a perfect world….
I went out on Saturday as I had to do some errands, took a cab 12 blocks, went into a department store (eeks), bought something and walked a block to Staples to buy printer ink. I had to sit down for 10 minutes, then I walked one block to Barnes & Noble. Stood for 10 minutes looking at books, which I love to do, but hardly ever do it, then went to cafeteria and had to ask server to put milk in my tea as I could hardly walk to do it myself. Sat for 10 minutes, then took escalator (eeks, was dizzy and afraid I’d fall) and walked around for 10 minutes, then took elevator to main floor. Out, took cab home, wiped out.
A typical day in the life of a ME/CFS sufferer trying to do errands no one else can do. No one
I know would believe this if I told them, well, maybe on or two. But this is why I have been cancelling appointments and can’t get anything done. The NY Times are piling up, tasks to do.
No energy to make dinner so had frozen yogurt. My usual take-out place no longer feasible, so no Plan B when I can’t prepare food.
Sorry to vent, but I know you all understand this situation. I was not even prepared to have to sit in doing a few errands.
A
Kathy, that list of activities would make me crash too! I always underestimate the impact of sensory overload when going into stores, etc.
Do you use a heart rate monitor? I wonder if that would help you pace, know how long to sit, etc. The other idea is a rollator – it’s a rolling walker with a seat. That way you can sit while looking at books, waiting in line, etc. I don’t have one because I use a wheelchair when out for big outings, but I know other patients that use them.
Thanks for the idea. I can’t use a walker, rolling or otherwise. My building has three
stairs in the lobby, which I couldn’t maneuver, and a stoop of one step, too. And
getting one in and out of a cab would be hard, too.
I do use a cane for other reasons and I lean on it when I have to and it helps me
with balance, especially in the streets, which around here are uneven and have potholes,
cracks in the sidewalk, etc. Even that can be a hassle.
Being tired after 1 1/2 hours in a bank near my house, then quick food shopping,
then as I felt myself crash, stopping at the library on my way home, when I then
tripped over my cane, it just all gets harder when one is wiped out. I was doing
errands within 5 blocks and sat the whole time in the bank, but once I hit
Whole Foods, I started to crash.
So, I’m homebound for awhile. Will fall back on having some food delivered, as
I can’t look at the same things in my fridge one more time!