I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is intimately acquainted with the frustration we feel.
Anything to do with this illness is fraught with frustration. A few examples:
Getting a diagnosis often takes years during which time patients and their caregivers are frustrated at every turn.
Getting to see a specialist is also a lengthy and frustrating process for most patients, often involving lots of travel and other expenses in addition to medical expenses.
Processing insurance (if one is lucky enough to have it) is frustrating, time consuming, and hugely cognitively taxing (even for healthy people).
Then there is the frustration of trying one treatment modality after another to try to regain some function.
The unpredictability of the illness is a constant frustration as one tries to learn what is a symptom of the illness and what needs to be addressed by another medical professional (if we can find one who believes in us).
Trying to avoid the exertion that brings on a crash is an exercise (pun intended) in frustration as crashes can be brought on by exertion beyond our limits, by additional illness (example, a cold on top of everything else), and sometimes for no apparent reason because we can be as diligent as possible about staying within the boundaries dictated by ME, and yet sometimes a crash comes on us nonetheless.
The frustration and desolation of losing connections/contact with others as our lives become more and more circumscribed by limitations imposed by illness.
There is frustration as we try to adjust to the decreases in activity levels ME imposes on us.
The frustrations of dealing with the daily stigma/disbelief we encounter from those who don’t understand – whether it be implying we don’t try hard enough, or “I must have that, I’m tired also”, and on and on.
As limiting as baseline is for most of us, when patients are below baseline, the level of frustration increases with heaping doses of fear piled on top as well and it is a very unwelcome combination.
There is the (often unspoken) fear that this crashed level may become the new baseline and the fear of all the the ensuing adjustments that would need to be made and the fear of the additional losses, increased isolation, additional disbelief, etc…..
Additional frustration gets added to the mix because there is so little we can do to alleviate a crash. It makes us feel even more powerless in our dealings with this beastly illness. For me it is particularly frustrating not to be able to help loved ones/friends get back to baseline.
Frustration and feeling powerless often stops us in our tracks. How do we get going again? How do we deal with the frustration and powerlessness?
I have noticed that when I am feeling particularly frustrated/powerless I often listen to intense music. The music seems to encourage me to validate the pent-up feelings of loss, grief, frustration and powerlessness and I can then turn back to advocacy/caregiving with a bit more determination. While for many, listening to intense music – especially during a crash – would not work, it seems to help me.
What have you tried?
What has worked for you?
Before I got sick, I dealt with frustration through physical movement. I would take a long walk, or clean my apartment with the music blaring. I still feel pulled to do that now – baking something, organizing something. But while I’ve been recovering from this difficult crash, I have tried very hard not to do this. And it’s been painful. The desire to move, to escape the frustration, is very powerful. I’ve turned to watching movies, although I couldn’t tell you most of the names or what they were about. But when I’m frustrated, I need distraction. If I can’t physically distract myself, I have to at least turn off my brain.
I do something, accomplish something. My personality is to be task oriented. I must say for me, losing things is a weekly sometimes daily frustration, and expense in replacing things. I’ve learned to just consider it a cost of living and adjust instead of keep looking. So, once every two months, I buy a cell phone. Looks like twice a year I buy mew car keys. I keep two notebooks, when I lose one, I have the other. Losing my pen when I just had it and just got situated has got to be the worse. So I just look for a few minutes. But to stop the frustration, I just replace what I lost.
back to accomplishing something. I do writing work mostly from home. So, usually, within a couple of days, I can do something. Also, a hobby os good, to just accomplish something. mine was making jewelry, stringing beads, before I got loaded with work.
Denise, nice blog! I am in a bit of a crash myself right now–have contracted superficial cellulitis (not as harmless as it may sound–nothing to do with cellulite!), and that provokes anxiety..it has not responded to antibiotics so far…). I find lying on bed with a really interesting long book helps quiet things down and makes me calmer. And avoids thinking about that ghastly P2P process–still can’t really believe it, and don’t know if it is worth writing any more–who would read it anyway? The world is in sad shape, and we are in one of the sad spots, though by no means the worst…
Cellulitis is no joke, Chris! I hope you recover from that soon. Take those antibiotics!!!
Interesting to me because since I got sick I stopped listening to music in my car altogether, and listen more to calming music at home when I do. Now that I’ve am 1 1/2 years into herbal/homeopathic treatment for chronic Lyme, and am noticing several improvements, I noticed that I have started tolerating music in my car again, and music with a little more volume on good days. This is a sign of improved symptomology I never anticipated, but once I noticed it I can used it as a marker for a “good” day. 🙂
I found that my interest in/ability to listen to music returned in the last several years. For more than a decade, I could barely tolerate it.
Essential Oil of Lavender (organic if possible)–I love lavender–it is very calming to breath in–put some at the temples and on wrists (behind ears too) and then breath in the fragrance from the wrists. At night before bed I always do this as well as listening to calming music. One word of caution–lavender is contraindicated for LOW blood pressure. Sometimes thru the day I will also use the lavender. To ‘wake up’ the senses–day-time–essential oils of anything citrus — lemon, grapefruit, orange–or bergamont, etc. are good–but these, unlike lavender, do NOT put directly on the skin—put on a cotton pad and sniff away — or use an infuser.
I also love music–and at first with ME/CFS–I would (continue to) play some lively loud music—then learned / realized ‘in my new life’ that was too wearing on the brain to take in — plus it would beg my body to get me dancing–the ‘old’ fast way–and a few minutes would wear me out completely (having not quite ‘learned that’ at the time). Soooo, I now have a new collection of music that is ‘softer’ 🙂
Also, to give my brain a rest or a different focus–I’ve been cutting out the crosswords from the paper and will do a bit of that–and then move onto another one or ‘stop’ when it’s ‘enough’ of that 🙂
Great blog Denise! Frustration is one of my biggest struggles with this illness, for so many reasons. I go through stages where I am more content than others and a big part of that is learning be patient and calm. Just when I think I’m getting good at it something flares (one of the many you list) and bam, I’m wondering where all that hard won patience went!
Escaping is a big coping strategy for me. I have a hard time not feeling guilty when I’m just doing “mindless” things that don’t accomplish anything, but sometimes that is just what I need. On those days I’m careful to focus on the things I CAN do, no matter how small. I allow myself to feel awesome for being brave enough to brush my teeth or fix a simple meal (or post on a blog.)
Hobbies have been huge for me through the years. (I don’t consider them mindless things.) I have my sewing machine in my bedroom so I can stitch a while and rest immediately. In the spring I always get excited about my gardening and start seeds (that is typically my good time of year.) I have finally been able to let it go that I’m never well enough to harvest the vegetables in the summer (not my good time of year.) I obsess way too much about my flowers. Bleh, I’m getting so much like a grandma! I have also discovered the art of re-reading. Pre ME I always wanted to be on to the next adventure in novels, but now I find that it’s helpful to already have a basic idea of what’s going on so I don’t have to read a page two or three times, and if there is any suspense it doesn’t keep me awake and on high alert for days.
Music – Nope, not yet. A big frustration. I have invested in an industrial white noise maker though, and am very pleased with it. I am the queen of the volume remote at our house.
Once in a great while it helps me to remember (or see pictures/watch video of) my previous life. When I can truly be grateful that I had such an active and productive run into adulthood. Well,….. we all loose so much to this. And caregivers are a special sort of hero. You rock Denise! Thanks as always to Jennie for this awesome and award-winning blog 🙂 !
What do you sew, Darlene? I quilt but find knitting to be easier to handle physically.
I’m a quilter. You should see my stash! I spend way too much time organizing and admiring it. I have many tops finished that are waiting to be quilted because that’s more labor intensive than piecing. I guess I should hire someone to quilt them, but that’s hard to do when I have my own machine and ideas. I tried knitting before I got sick, but never had the patience for getting the tension right. Perhaps I’ll give it another go when I get room to store a yarn stash. Gah!
We will have to compare stashes! I vastly prefer piecing to quilting and started using a service awhile ago. Quilting by machine is so labor intensive with a full size quilt.
Music is very important to me as well.
I try to let some U2 lyrics guide my activism, though it can be hard:
“You’ve got to cry without weeping;
Talk without speaking;
Scream without raising your voice.”
from Running to Stand Still, The Joshua Tree
No, not easy when all I want to do is lash out…
Best. Album. Ever.
I become a turtle! When anything gets me so frustrated than I can handle, I turtle into my shell. I don’t want to talk, read, listen, research, do, write, be or go until I have been restored. Solitude is mine, isolation and imparement are the gifts from the expectations of those who do not care about my disease enough to understand my situation. It will be a long & quiet 30 year future. Being powerless is frustrating.
I’m with you, Molly. I desperately want to be a turtle when I get frustrated or overwhelmed, and I rarely allow myself to do that.
@Claudia
claudia:
can you please share more abt your herbal homeopathic treatment which is helping you. i am very very ill and searching for new things to try and alleviate my fatigue and pain.
thanks, lisa
lisagrasso@comcast.net
I write in my journal or talk to someone, assuming I’m not too weak to do so.
I also write in a journal–be it handwritten on paper–then those writings get ripped up and thrown out . . . in being ‘done’ with that OR keyboarding thoughts/questions on the computer . . . Write and write and write and say anything you like and then being ‘done’–delete. Prioritizing and asking self — ‘Does it matter?’ Many things can just be tossed — as not really ‘mattering’ in the grand scheme of things 🙂
I was a music major…loved it. I can’t do music unless it is something I learned pre illness, like 60’s – early 80’s + classical. There is a Beethoven..of course I cannot remember the name, one of his last pieces and a movie was made about a woman who wrote the music down. When I hear that piece, everything stops. I am on top of the world. Nothing else matters. It is consuming and I don’t know why. I am inside that symphony, so it causes all kinds of physical movements & unexpected feelings. Weird.
Lastly, after all these years, I know that frustration comes with 2 things, when my hands will not do what my brain wants and it happens all day long. Bull in a china closet…but I cannot fix it. I just have to plan ahead step by step and talk out loud as I do the thing. Secondly when I get angry, I get frustrated with my reaction. I don’t shut down, I pour out, rehash, do scenarios in my head. I have to talk it through with someone and finally I simmer, then the fire goes out and usually I laugh about it. I am not angry at myself, mostly mean spirited, judgmental people and institutional stupidity. I have tried to divert my attention, but it never works.
Denise Lopez-Majano understands. She wrote, “There is the (often unspoken) fear that this crashed level may become the new baseline…”
And when that DOES happen–when there IS a new, lower baseline–is it fair to call it merely “malaise” or a “crash?” Wouldn’t it be more accurate to call it “disease progression?”
Several people, above, describe a loss of function–not malaise.
I am truly disturbed by the term “PEM” and its inclusion in case definitions. I long for a stronger, more accurate term.
We need to remove PEM from our vocabularies. “Malaise” is worse than “fatigue.” It means a feeling of unwellness, a vague feeling of not being healthy (check it out on Google). PENE – post-exertional neuroimmune exhaustion – is an odd word – how is it pronounced – pennEE or penn? Denise came up with post-exertional collapse, which is much more accurate. We cannot expect the experts and the govt. people to start using PEC or to even give up PEM, however. But WE can stop using the term. A good feature of PENE is that it describes the extreme depletion of energy, different from simple fatigue, that is the hallmark of ME.
I also recommend that all patients and advocates stop using the words “chronic fatigue syndrome.” STOP. Period. Stop saying that in any form, such as CFS. I have found that if you mention or talk to people in order to describe this disease and say it is “Myalgic encephalomyelitis” they will (1) not know what you are talking about, (2) not know how to say or spell it, (3) need an explanation of what this is. What they won’t do is dismiss it!! They won’t say, “oh, I’m tired a lot, too.” I spent a half an hour last week teaching a third-year medical student something about ME, complete with writing the name and a link to the ICC definition. I never uttered the words “chronic fatigue syndrome.” I also never say CFS to anyone anymore.
If we each start doing this, we will begin a movement away from “chronic fatigue syndrome” and its decades-old problems. “Chronic fatigue syndrome” is not real. It is a false construct. It is a name that prevents a proper diagnosis of the real disease. ME is a neurologic and immune disease with distinct and measurable abnormalities. ME is NOT a subset of this oddity “chronic fatigue syndrome.”
At least three studies have shown that this is the case. Why have patients been diagnosed with CFS and not ME? Simply because that while their symptoms met the criteria for ME, ME was not being used as a label in the U.S. until the mid-2000’s. Their symptoms had not yet been listed and explained properly until the CCC came along. For 25 or so years this disease has been called chronic fatigue syndrome. Very likely the majority of patients who have been diagnosed with CFS as far back as the 1990’s meet the ICC definition of ME. The CCC definition refers to ME as “sometimes called” chronic fatigue syndrome and adopts the combination name, ME/CFS.
However, what has evolved somehow is the thinking in some quarters that ME is a subset of CFS. No. Some patients have been diagnosed with CFS who do not have ME because of the overly broad CFS definitions still in use (Fukuda, Reeves). But what they really have is UNKNOWN because they do not meet the criteria for ME, and “CFS” doesn’t define anything accurately. When we utter those words, we validate a false idea and extend the harm that the name does. Try it. Watch your listeners’ eyes widen at the seriousness that “Myalgic encephalomyelitis” suggests. Then explain how bad it is; how many bodily symptoms it affects; how the bodily dysfunction levels are up there with terminal AIDS, cancer and heart patients. Re-educate people.
Billie
As a quick interuption in flow – but in regard to coping, I wanted to add a favorite Joseph Campbell quote: “Find a place inside where there’s joy, and the joy will burn out the pain.”
I love that quote, Ren!
Hi all,
So glad I found this website. I’m having trouble typing as my muscles hurt. I just hibernated for several weeks as I’ve had additional virus symptoms in addition to ME/CFS and broke my arm. So, just stayed home watching TV and reading mysteries.
My touchstone and diversion is the Internet, the blogs of mystery readers and commenters. I can come and go as I please.
And, of course, the ME/CFS community. Some days I can read blogs; other days, I can’t.
I have found that I’ve had to also withdraw from some friends who are too hyper and high pressure about every medical and dental problem I have and what I must do! I can only do one thing at a time, which I stress, and even hearing pressure in a voice exhausts me. I told a friend on the phone that her pressure was tiring me out, and I had to get off.
People have to low-key it or I have to do things as I can, which may not be great, but what else can I do? I live in fear of falling again and breaking another bone here. When I fell, I went outside already exhausted with packages to take to the p.o. I hit uneven pavement, ankle wobbled and down I went. But I instinctively knew I should not go out and — unusual for me — I didn’t listen to my instincts and went out anyway. Mistake! Listen to your inner voices about what you can and can’t do. That’s my lesson after years of having this disease.
@kathy d.
Sooo sorry to hear of your setback with breaking your arm 🙁 And, you are soooo right about listening to your/our instincts and innner voice–a careful reminder to us all. Take care and heal well 🙂
Nice blog, Denise – and hang in there Jennie! Our thoughts are with you as you try to get through your “crash from hell.”
P.S. I use white noise when I’m over-stimulated and low-key music from my teenage years when I’d like to reduce stress and frustration.
I can relate to how fragile even the smallest of good streaks can be. I’m also one to push my luck and it usually takes a reminder of going too far and crashing, or crashing from something random that I couldn’t have controlled anyway, to remind me that the good streak was temporary. Frustration defined!
I have different levels of coping. If I’m not totally house bound I find that leaving my house for even the smallest amount of time to a nearby cafe to be the most therapeutic. Just getting out of the house to a familiar cafe takes my mind off my big picture predicament: for that short time I feel like I’m just a normal (faux) grad student or housewife or artiste having a contemplative tea or coffee in the middle of the day (and not a mostly housebound sick person).
If I’m sofa/bed bound I try to escape into books or audiobooks, radio, podcasts, or guided meditations during the day. The sophistication of the material consumed is inversely proportional to how sick I’m feeling. And if I’m in a “crash from hell,” I go into turtle mode since I know it’s the best way out, hopefully.
As for frustrations that I feel like I can’t talk to anyone about because it’s too personal or requires too many levels of unexplainable issues, I write or dictate my thoughts into words. I find articulating the frustrated feelings and the reasons for them helps get rid of the feelings themselves.
Congratulations Jennie, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. This is just a bit of fun and recognition for Bloggers – no obligation to participate either immediately or ever, if you’d prefer not.
Please visit http://sallyjustme.blogspot.co.uk/2014/02/another-5-me-cfs-fms-blog-awards.html to collect your Award.
Thank you very much!!!