If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), a kind of ‘malaise’ has settled like dust into my bones and brain, bringing boredom and lassitude (mental weariness, listlessness or languor).
Let me explain.
On crash days, I fester in bed, trying to weather the head-to-toe pain, bleary eyes and brain buzz. I can’t read, talk on the phone, or even communicate much with my husband. The only distraction might be watching some mindless streaming true-crime video with my IPad perched on my pillow. This is far from malaise.
I’d say I am about 50% disabled. I experience various levels of debility and stamina, and I’ve not been able to always figure out what will cause me to crumble. Some days I can enjoy dinner out with friends and not experience the dreaded crash, but on others I can feel the painful drain, as if some vampire is sucking out my lifeblood (not really a hyperbole), during the salad course. Some days I can both do some laundry and make a decent dinner; on others, I’ll start out okay but have to abandon sautéing the onions and crawl back into bed.
So, of course, like all of us with ME/CFS, I try to avoid those days by pacing myself.
As a result of frequent uncertainly, however, I find myself vacillating over decisions. If I feel strong enough, should I risk going out to dinner? How important is this activity? Will I wind up in bed for a day, a week, a month? But will staying home just increase my sense of living outside the mainstream, isolated in the creases of life, and therefore add to an overwhelming depression? If I’m really blotto, there’s no choice. But on a better day, I can work myself into mini-madness being unable to decide.
Sometimes I just plunge ahead and go without major dithering. Last weekend I felt strong enough and so I deliberately chose to attend part of one day at the Tucson Book Festival. My husband guided my wheelchair through the various booths and events and I heard some wonderful talks by great authors. The next few days were awful but I knew the price and was willing to pay it. Without (much) regret. And clearly I felt a lift just from having been out in the world, doing something I enjoy.
I don’t always however, have this clarity. For the past 16 years of illness, on days when my symptoms have been mild to moderate, I have wavered back and forth: Should I venture forth or stay home and hibernate. I keep monitoring my body. How good/bad do I feel?
So what does this have to do with a developing malaise??
The blahs
I think it’s partially the result of forced idleness. When I feel reasonably capable but opt to stay home and rest out of fear of the too-familiar evil results, I can descend into an emotional and spiritual kind of lethargy and lack of enthusiasm. I get The Blahs. I’m not suffering a severe downturn which makes activity impossible; instead, I’m just hanging out, meandering, kind of purposeless. I won’t do anything even remotely strenuous—otherwise why did I stay home in the first place? Days, weeks, years of this can lead to the psyche of a slacker.
Indolence itself induces indolence.
I fight against this, of course. When I feel myself descending into sluggish mode, I defy the crash demons and whip myself into some kind of project – baking muffins or driving to the drug store or starting to knit an afghan or writing a blog like this, all with built-in rest times – and then face the consequences, either some restoration of psychological well-being or another lousy collapse. Or I might do the mindfulness thing – stop, assess, breathe in patience and compassion and acceptance. I’m not great at that but it still helps at these times.
This is some wacko illness.
I wonder if this is my own private experience of malaise, or if others share it.
Omg,I could have writen this ! It’s just how I’m !
This is such a good description of our lives. I, for one, keep hoping that the little things I try will help. I have the pain under control today but dread the prospect of having to go shopping tomorrow not knowing if, fearing, the lifeblood will be sucked out of me afterwards. Adding to the challenge will be trying to find all gluten-free foods which is the latest attempt at a partial fix. Being gluten free seems to be a help by-the-way. Carol and anyone else with this albatross is fortunate to have a husband and/or family to be supportive. I don’t, so it’s doubly hard when the people around me don’t really understand what we go through.
Kudos for the accurate description of our day-to-day and best wishes to all.
William- have you tried grocery delivery? Maybe you’re talking about other shopping. I have no idea where you live, but here in California I just started doing Safeway delivery. It’s great- they are on time in a one hour window, the order is accurate, the delivery doesn’t cost very much, and they stick a free treat in as well!
Thanks for reminder, Marilyn. I made a feeble attempt at this a while ago. Will give it a more serious shot!
William,
I too have no support from family or friends…they just don’t get it! Glad to hear your gluten free food plan is helping. I am going to be starting on that after Easter. Problem is those food products are very expensive, plus I have finally given in and hired an aide for a few hours a week (difficult as my ME forced me to stop working 20 years ago). Her “doing” makes me feel even more of a slug, but I just have been truly exhausted again…unable to do housework or food shop. I feel like I’m going backwards!
Having the same thing for nearly two decades Carole, you have emphasised so many points, thoughts, feelings here and I’m certain there’s a lot of us that can really identify with this! Especially the wavering back and forth and not being sure of exactly how much is too much?! Just when you think you’re pacing yourself and doing well…bang there it goes again. I am going through all the same kinds of choices, questions and forced time in bed. This is the first time I’ve felt compelled to comment because you have been able to explain so well. Most of us are not idle by nature, far from it and I often struggle to accept it when I’m stopped in my tracks. Well wishes, Julie
my MALAISE is feeling DEATHLY ILL, its when i just want to die. just staring at the walls until it subsides.
oh, just ONE sneeze can bring it on so don’t talk about pushing oneself or doing little things. i can just reach for something and POW i’m laid out in bed just breathing till its gone!
You’ve described very well what I think most of us must experience – lying in bed trying to decide whether getting up and doing something will make you feel better or worse – and if worse, would it be worth it? I’ve never been good at the 50% rule – stopping before you get tired. Where there is a shred of energy left I will use it; where there is the slightest impulse to do something, I will do it. Otherwise life just leaks away … Not surprisingly there have been many crashes along the way and I might not be ill today if I had known how important it was to listen to my body and rest in the early stages. But I hold on to the many, many times I have gone out and done something and crashed and not regretted it one bit, because I have carried home with me a store of good memories, experiences, new learning and thoughts that will continue to enrich my life – even if that life is in bed.
As for malaise – I know both sorts. We should distinguish between them. The malaise of ME/CFS is far more than the blahs, the lassitude and mild depression that comes with a boring life in bed, although of course we get that too, how could we not? But a defining symptom of ME/CFS is feeling really ILL. In the days before diagnostic tests, if you complained of feeling ill – of experiencing malaise – that was an indication there was something seriously wrong with you and you weren’t doubted. For me, one of the hardest things to bear about this illness is the scepticism of people who believe you aren’t really ill because you haven’t got the lab reports to prove it. I cling defiantly to my symptom of malaise. I feel ill and I AM ill. So there. We shouldn’t dismiss the importance of this symptom.
I would like to know, does anyone here have ME/CFS and not experience malaise?
wow meg-you stated “me” exactly. and on the subject of do i feel well enough to do something i find that in itself is my answer! if i do try to do something i crash.
Meg said: “As for malaise – I know both sorts. We should distinguish between them. The malaise of ME/CFS is far more than the blahs, the lassitude and mild depression that comes with a boring life in bed, although of course we get that too, how could we not? But a defining symptom of ME/CFS is feeling really ILL.”
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You got that right Meg! The malaise of ME/CFS is far more than the blahs, but a defining symptom of ME/CFS is feeling really, really ill. The despair of seasickness well illustrates the phenomenom of what malaise can feel like for ME/CFS sufferers. Anyone who has experienced seasickness well knows the misery and hopelessness it can inflict. Now, imagine having to put up with that sensation for the rest of your life; no getting off that ship, that is what malaise feels like to many ME/CFS sufferers.
Wow Rachael, I never thought to explain the malaise like seasickness….that is brilliant and exactly right. I always say its like coming down with the flu everyday, but seasickness really drives home the message:).
I really feel you on this. Have the same problem, the same thoughts- and wind up thinking that yes, this is some wacko illness. And then there is good and bad days. Days I’m satisfied with my decisions, days I feel like I cant do any decisions at all. Its easy getting into blah- mode- wondering if all the thinking is making it worse and wondering what physical sensation is real or not, when the mood is taking a turn downwards if I feel just ok- but not sure if thats enough and I cant have enthusiasm for starting on anything out of uncertainty of what follows. i try to save myself from disappointments, too. enthusiasm also seem to come with energy- I have a long list of activitys I always would want to do- but the pacing and resting brings pauses to these, pauses that brings you out of “the mood”. You kind of want to surrender to the resting mode- I can lie In bed just waiting to get up again and continue on whatever- but this feels like lieng on needles counting minutes and that is just not very relaxing. Its hard. At least, appearently this is not just your private experience- and I know that neither is mine, which feel good to know. (Even though dont wish this upon anyone else) Thanks for sharing. i think it was time well spent writing, at least. And wish you some good days to follow.
I so agree with the idea that it is worth doing something fun, even if it makes us tired. (For each of us the level of the fun activity will be different, of course.)
I felt vastly better in myself a couple of years ago, but still experienced the exhaustion if I did something interesting like going into Oxford (UK – a 15-minute bus ride from my home) and wandering around. I was at the point where I felt I was a hermit. I only ever went out to shop (except for holidays, when I would go on a cruise). Some weeks the only people I spoke to were those in shops!
I decided to go back to ballroom dancing and have a 30-minute lesson each week, and it was the best thing out. I could hardly walk from the car after the lesson, at first, but now, a year later, I have a 60-minute lesson (well, 15 minutes of that is probably chatting) and cope quite well. I have also found a friend from dancing who stays at my house one night a week and we talk and talk. My quality of life has improved! My general level of energy has decreased. I keep looking at tasks and thinking ‘I can’t be bothered’ (which to me always means weariness). Is it worth it? Yes, because I feel alive!
Closing in on 20 years with ME/CFS I can relate. One of the worst aspects to me is that this disease affects both physical and mental function. So when one is doing worse or just wants to try to take it easy and pace there is very limited to no choice in what to do. Even listening to relaxing music, reading a book, or watching TV might be too tiring for an already tired brain and body. So I do push myself most days to some degree because of boredom. The mental stress of sitting or laying down doing nothing is crazy making when I’m otherwise wide awake and feeling and functioning relatively ok other than bone crushing fatigue.
As far as outside the house activities I will usually pass on them if I know I’m probably too tired or particularly if I’ve already been doing a lot recently. The only time I generally push myself is if there is a once in a lifetime event (world class museum exhibit, wedding, and such) that will probably not happen again. Even then I only go if it is nearby and I do not have to travel far.
wow 20 years!! I have only had it for 2 years post Ross river virus 12 months before that. I have had tried lots of things to improve my health that has helped so I have it now mildly. Still not working. Most strategies have been associated with diet and my gut health! I feel whilst it has all helped I have hit a stale mate! What have you tried over the years? 20 years f@@@
Wow, it’s like you’ve read my diary, when I’m not too exhausted to write anything. Staying in an envelope is so difficult when we never know how much is in that thing. My most difficult roadblock to staying at my best level are family events. I’ve lost so much time I just can’t say no, even if the best is as bad as I’m expecting. Then I start all over again, with less fight each time. As the former ” cruise director of fun”, it’s difficult for my friends and family to hear sorry, not today. They stay in denial and I stay in malaise .
This is a very well written account for what living with ME means. Having both FM and CFS, I do identify with your description of the down days. Like you, I make plans despite my illnesses. Sometimes I have to cancel, sometimes i make it and suffer through, half alive. But it is for that one in 20 that is near normal that I don’t make excuses. Those are the times when my social bucket, my sane cup runneth over. TY for reminding me I am not alone.
Carol,
You described CFS perfectly! I have paced and logged and worn the heart rate monitor and logged some more. And I still have trouble figuring out if I have enough energy to do something. Usually, if I cannot figure it out, I am brain fogged and thus tired, so I should just rest. I should listen to my brain fog, but sometimes I ignore it and I always pay later!
I have often used my heart rate to figure out how I am doing. When I am doing well, I can putter around for almost an hour with my heart rate at around 85. If I am tired, my heart rate will jump to 99 in the first few minutes. If I pay attention to my heart rate, it helps a lot. But often times I cannot figure out why it’s so high.
I made an interesting discovery through the use of my Fitbit watch that continuously monitors heart rate. I had a week long period of ‘malaise’ and I could not find a cause for such a relapse. Then I studied the charts generated by the Fitbit. It seems that I overdid it a little bit on Saturday (by steps taken) and then on Sunday I did the normal stuff, but my heart rate was consistently a lot higher than it had been on Saturday (though I felt fine). On Monday when I did my normal routine, I felt exhausted. And the fatigue lasted for a week. I didn’t actually do anything that weekend that I don’t usually do, but my body responded differently. I’m hoping I can figure out my energy envelope using this device.
Otherwise, I will just continue to push/crash, waxing and waning, and resting way to much out of fear that I will overdo.
I just want to say thanks to Carol for writing, and everyone for commenting. It’s good to not feel alone in this. Slumping to read comments is about it for me right now!
Hear hear!
PEM is the very devil. It has taken me years to understand, experiment and set up proceeeures to deal with imine
I used this article on Bruce Campbell’s site to understand how to set my own personal heart rate. http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
Logging plus heart rate helped me to understand why I suffered from Post Exertional Malaise. With “exertion” not just being muscular, but also cognitive and including environmental challenges too. This really informed my personal rules for pacing.
Once I understood what my body was saying to me, I realized that this was shown by my increased breath rate. So now I don’t always need to wear a pulse monitor, and by slowing down or stopping, sitting etc, my pulse rate recovers quickly. Using Dan Moricoli’s comment on the importance of taking early morning pulse rate in his recent Health Rising article, I alter my day’s plans accordingly. I’ve been doing this for a couple of years and find it really works to prevent overdoing it for me.
I recently learned that one cause at least of my PEM was likely to be the lactic acid and other toxins caused by stress and exertion that was taking abnormal lengths of time to leave my body. So increasing my hydration and good nutrition was one way I feel I can help shorten that period. Possibly very short bouts walking on a mini trampoline using gravity to stimulate the system could be helpful.
Does anyone have experience of this with PEM reduction?
Carol, that is a bravely honest post. The Blahs, and:
“…Indolence itself induces indolence. I fight against this, of course. When I feel myself descending into sluggish mode, I defy the crash demons and whip myself into some kind of project – baking muffins or driving to the drug store or starting to knit an afghan or writing a blog like this, all with built-in rest times – and then face the consequences, either some restoration of psychological well-being or another lousy collapse…”
I have fibro, not CFS, and have never declined to the semi-house-bound level; but I wonder if in that assessment somewhere, you can identify the level of exertion that is the threshold above which a crash occurs, and below which the restoration occurs.
My threshold is a lot higher but finding where it is and staying below it has been magic for me these last few months. I think there are two aspects to the threshold. One relates to level of exertion – like power output right now in Watts or Newtons – of any given muscle. The other is overall energy production; you can stay within this almost indefinitely but as soon as you run ahead of it you burn out and crash. This is like an electric motor with only a very thin wire feeding electricity to it – only a few amperes can flow down it. As soon as you try to run an electric motor like this above the level at which the amperes are sufficient to keep it running, burnout occurs. But within the restricted level, it can run indefinitely without a problem.
You can burn yourself out the same way; plus (with me, anyway) you can over-exert any particular muscle instantly which leaves it painful for even weeks or months.
“Built-in rest times” are not the solution if you are exceeding your threshold at any time. The solution is “not exceeding the threshold”. If you can achieve this, you don’t need rest times. At least, this is what has been magical for me. But I can only try to imagine the frustration of a threshold so low that a blog posting at the computer keyboard might be excessive. My threshold probably never went below “gentle walk”, and I could keep that up all day. But “brisk walk” even for 3 minutes would tip me over. Over the last few months my threshold has risen to the point where “brisk walk” is something I could do all day, but breaking into a jog for 1 minute tips me over.
On the subject of the exertion of the individual muscles, this varies according to the muscles and the positions involved. Squatting is murder for me. Climbing stairs is something I do VERY slowly still, breathing deeply as I go. Cleaning windows is also too much, or anything that requires working with my arm extended. With elbow bent and/or supported it is OK. But I can do quite a lot of basic exercises, and small weights on muscle strengthening machines (too big a weight and the muscle concerned will be sore for weeks). A few days ago I managed to gently saw up some scrap wood without hurting myself. I can swim and cycle as long as I keep it gentle, and am slowly getting more speed as my threshold lifts. I am trying to lift my threshold for the things like squatting, by doing it in a spa pool with my muscles nice and warm and my body weight supported by the water. I think this is working. Same with trying to strengthen my arms for things like window cleaning and painting: I have worked out some exercises to do in the spa.
I’d really love it if these suggestions help others. But the original insights into analysing my own condition and devising strategies came from Cort and this blog, so a massive thanks for that.
having a bad day today so brief. When ill I physically cant do much as I fall asleep afterwards. Thats different to feeling disinclined to do anything. Sometimes I do more than I should because I have other people to consider.
Carol, you have such a gift for being able to express yourself – thanks for the post which describes perfectly so many of us.
For anyone interested, here’s an article from yesterday re CFIDS and the IOM report —
http://www.huffingtonpost.com/society-for-womens-health-research/chronic-fatigue-syndrome_b_6932242.html?ncid=txtlnkusaolp00000592
When, I wasn’t taking antihistamines and other agents to control my ME/CFS symptoms, my experience with malaise was not just lethargy, but a sore throat, swollen lymph nodes, inflammation, dizziness, nausea, irritable bowel, agitation, severe headaches, anxiety, a desire to sleep (but unable to shut down), low grade fever, tachycardia, low blood pressure, sensitive to light, noise and odors, and sensitive to foods, medicines and chemicals. I would have yeast infections (candidiasis), the type you get after taking antibiotics (except I wasn’t taking them), that kill not only bad bacteria, but also the good bacteria. I was so physically sick, that at times, I didn’t have the desire to live another day. Add exertion/exercise, which amplified my already, everyday symptoms, and you have a recipe for disaster. I wonder if this was my own personal ME/CFS experience of malaise with/or without exertion, or if others have experienced the same.
Rachael…you have described my circumstances perfectly. I expect that most of us with CFS have other complicating syndromes and ailments Beyond CFS alone. Personally I am suffering from fibromyalgia, chronic uveitis, severe tinnitus and a head and neck injury along with CFS/Epstein-Barr. I am sick, and it seems to be getting worse with time. Anti-inflammatory diet, organic supplements, exercise, etc. have had no impact on my status, and the only thing that helps, The only thing, is sleep. It’s just the way it is; I haven’t given up, but I’m also realistic after trying everything.
Yep me too!
Obviously I made multiple entries….I guess I really am having a bad day!
Wonderfully expressive & self aware piece. Its just a shame the people in our lives- even very peripherally are not reading these pieces & the responses. They express much more about the reality of this illness than so many of the articles out there from a medical perspective.
I have found that I can actually make myself much more ill by spending hours/ days before an
event trying to decide whether its wise to go or not. The emotional & psychological stress this produces inevitably adds to my flu symptoms & all the other astonishing & sometimes unbelievabl( even to me!) array of symptoms. I say yes to so many things, make so many plans simply to feel
a sense of joy, of some worth in the world & most of all as a person living alone, to feel connected
& belonging. 75-80 % of the time I dont achieve these goals. Yet if I didnt dream & make plans
& sometimes return to the world for a short time I’d forget completely who I used to be.
There is no easy answer here. Toni Bernhard, Pema Chodron, my very smart & very tuned in cat,
music of all kinds, self compassion, the best possible food, a sense of humour, Health Rising website, any ways that can help us not live in our heads . All these have become my allies.
I never give up on the belief that I will be healed one day, even if its not in the way that I think
I should be. With all that I do also honour my very bad days, knowing they will pass.
This “I have found that I can actually make myself much more ill by spending hours/ days before an
event trying to decide whether its wise to go or not” is so true! It’s incredibly stressful. Better to just make a decision and stick to it and see what happens. Learn from that – make another decision – stick to it and see what happens.
The space of indecision is a not a good one…
I think what is needed is an iron will regarding pacing.
No, I won’t do “X” because I WILL crash. I will do “Y” – a less demanding but still fulfilling thing INSTEAD. I won’t do nothing and I won’t procrastinate and I won’t get the Blahs.
Yes, the indecision can be crazy making. I’ve learned to say “I hope to make it” and decide pretty close to the last minute sometimes. Of course, that means I rarely purchase advance tickets to events anymore, but missing out on those special events no longer seems as important as it used to. Priorities have definitely changed!
Grace this is so true and well put. When I get ready and then can’t go, sometimes to the point of getting to the place and then driving home, it’s harder emotionally than never planning to go. But as you say we need social connection and there are times it does work out. As Carol said, this is one wacko illness….
I believe that I’ve got more problems with crashing when confronted and confounded by decision making, psychological stressors of the smallest kind, and other more mental activities than by physical ones when I am well enough to engage in anything physical. And this is a stressor in and of itself. Choices do me in.
Oh my, I’ve been weighing these matters for19 years. I am always arguing with myself, ‘maybe I should go….’, ‘oh no better not’….. Every 2 or 3 wks, I just go over to my sisters, play cards and have fun with friends. It clears my head so that for the next week of crashing I at least can say that I had lots of laughs and have a reason to be so tired. I hate the end of the second week; myh husband coming home every evening seeing me looking so blah, glad he is so understanding.
Hi Carol, what you describe is just how I feel today. My body is all right but my mind hurts, and is having trouble sustaining an interest in even simply pleasurable activities.
Yesterday, I felt grrreat, and did as more than I’ve been able to do in a workday for some time. And I am paying for that now. BLAH.
But at least there are nice articles for me to read and go “yes! me too!” so I don’t feel quite as blah as a few minutes ago.
Well written. I concur in your feelings and way of life with m.e./cfs for decades, severely declined for 8 yyears. Appointments, timeline, outings, leaving, vacations ( ha! Not!!!) the house at all has become a big emotional, physical , psyche-mind-f*#k! I especially vacillate up to the minute I leave the house, even on the way to important Dr. Appointments ( cancer specialist and m.e/cfs Dr.). “Why bother” I think. Why suffer the crash I ‘ll suffer after the appointment. For what? I love my cfs Dr.he iscompassionate. Listens. But after 7 years on antiviral, lifestyle, diet change, meditation, herbs, minerals , vitamins, $$$$eastern medicine I am still declining. I don’t wAnt to be a sad statistic of m.e./cfs so sometimes the research, hearing others stories depresses me. Takes away my hope that long time m.e./cfs people rarely recover. A double edged sword because it does help me to know I am not alone.
I’m from the UK and just thanking Carol Lefelt and so many of the other posters for their comments on ME/CFS; so glad to find this on the internet. It puts into words what is so difficult to describe. When I say pain, fatigue, nausea, etc it really doesn’t encapsulate how the illness feels day-to-day. I have occasional good days as well, so I feel like I live in two worlds sometimes (and don’t belong in either). When I feel good for a brief period I feel almost ashamed, a lucky imposter! when I’m feeling bad there’s almost no way to describe it, but so many of you have managed. Thank you.