when you get it right
you pass it on… Gary Snyder
When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades.
If you could do it all over again – what would you do differently?
Of course, we all make mistakes – major mistakes – that we wish we could have avoided.
False assumptions or expectations are often the culprit. We didn’t realize we were playing with a bad hand, didn’t see that train coming down the tracks. Basically we missed or didn’t know something.
We thought “this cold will go away”, “I can trust my doctor”, “Doing “X” surely won’t hurt me,” only to find out later that we were wrong. We carried on, sometimes blissfully ignorant of the fact that we were digging ourselves deeper and deeper into some hole.
Of course, hindsight is always 20/20. While hindsight can’t undo the mistakes of our past, it can help others to smooth their path, and make their journey through ME/CFS/FM a bit easier, and that’s what this survey is all about. These diseases are big enough challenges without us adding on unforced errors along the way.
This survey’s genesis is a 2013 post which asked, “Given what you now know, what would you have done differently on your journey with ME/CFS/FM?” A followup post was promised and, six years later, here it is. (:))
This survey is part of Health Rising’s Community Reports series…
The Survey
The poll questions created from this survey are derived from the 100-plus comments the earlier post elicited. (Plus I added a few.) They cover doctors, treatments, stress reduction, relationships, finances and disability.
A little warning – that resulted in a rather long poll but it should go quickly. The results of the poll will be featured in another post (which will not take six years to produce).
Note that all poll answers are anonymous. There is absolutely no way to tell who provided what answer.
Feel free to suggest additions to the poll.
One of my biggest regrets is regards to what I would have done differently prior to
Getting sick. At the time I had a poor diet virtually devoid of nutrients, for many years. Plus drinking every weekend. I feel this left my immune system much less able to fight off the infection that came and either directly or indirectly caused the me/cfs
Thanks – I just added a section on that.
Cort. I would also like to know how long people have had this illness. I have had it 51 years so it was virtually unknown then and was treated as depression. With all the information now available I would not have followed doctors instructions to do more and exercise more.
Can we make a poll in the prior section about child hood. I was about 13 when I started having symptoms and can’t remember what it’s like to be well.
Oh Julie, I changed schools in 8th grade & got Mono (though I hadn’t kissed anyone at age 15) and felt the awful blackness in mind I suppose from this dreadful affliction! I was totally physically exhausted & was out of school for a month at least! I pushed myself through High school & college, but I paid heavily with worse health including severe burning in head, ears (with chronic ticking/roaring Tinnitus which is so loud) & in body. If it weren’t for the joy in my relationship with CHRIST I would not be here today! Thanks for allowing me to share a bit of this dreadful CFIDS & Fibromyalgia (which really is excruciating) etc.
Tinnitus! A nice add-on (lol).
Glad you have a spiritual connection that help!
Amy,
Just wanted to connect as a fellow Christ follower. Yes, without joy in the Lord, I would have given up long ago. I’ve pushed myself through many years of work and church activities and now am mostly homebound. Learning to walk in the yoke with Jesus pacing me!
Amy – Being a Christian is what keeps me going. With the severe depression I have had over the years, brought on by this disease, I have entertained thoughts of suicide. But my faith in Christ has seen me through.
Diana – it is so wonderful to see fellow Christians. We struggle but we know there is a purpose. I keep thinking maybe I can be an example to others in theese situations. Or a guinea pig. That I can offer something to other current or potential victims. I cannot find a doc and I want to participate in studies. Neither is happening.
Hello; I also changed schools for my senior year in high school and got a terrible malingering virus which lasted for months. I dragged around and felt so weak and terrible My legs felt lilke jelly and I was never the same after that especially with stomach issues that never ended. Its interesting that you mentioned that you changed schools just previous to this occurring. I am still ill 42 years later. I’ve never come across anyone mentioning changing schools; maybe the stress broke the camel’s back in our cases.
Agree so much. Glad you added the section on it.
It is God who keeps me going when I have absolutely nothing left of myself. But I’ve learned so much about myself and Gods faithfulness through this illness that in a way I’m also thankful for it despite being bedridden x 6 yrs
I have tried everything. Diet, supplements, reading all I can find. The one thing I should have done is listen to the pcp who diagnosed this in 2007. A rheumatologist treating many women in the area with fibro and things unknown. Dr. Lorraine Bacca in North Platte, NE. She tried a few treatments common for the times. Vit C IV’s. for one. When I left work on a Fri so ill I could barely make it 45 miles home, I never returned. When I had no income I could not pay Dr. Bacca as she did not take insurance. I did go on disability due to extreme anxiety. I was fighting with my docs. Telling them I feel so lousy. They said you feel lousy because you are depressed. Duh! Do ya think. Talk about putting the cart before the horse. Short version I have not found any help from anyone during this time. No understanding from family, they never read the articles I present. Today I think – as lousy as I feel how can I still be alive. And YES – I push myself to the max. Any simple procedure – recently second cataract surgery – takes me down. I had so m any things left to do. Remarried and moved to western WA on the Olympic Peninsula. Any trips we take are drive bys. I can only dream about riding a bicycle, my horse, hiking. After a bad relapse there are weeks of destructive depression. I don’t hate everyone today quite as much as I did yesterday. Probgress???
One thing I would like to have known for a very long time is that I am intolerant to about half I used to eat. Knowing what I was intolerant too and how it would affect my life could have changed it entirely.
Just learning to know I was intolerant wasn’t simple at all, even when already having ME for years. I read about exclusion diets and did some checks to see if I had intolerances before, but local knowledge and experience with them is near nonexistent.
Trying to find out about a single or a few food intolerances on your own without help is difficult, trying to do so when having plenty of them is very very difficult.
So I’d wish I had really extensive knowledge about food intolerances and their consequences in my early life.
dejurgen, first off, I hope I spelled that right.
Secondly I understand exactly what you are saying. I was lucky.. which is an odd way to think of the horrors of IBS. I was painfully made aware of foods, supplements, stressors that I couldn’t tolerate. Since becoming ill I have even more intolerences but I’ve become a quick learner. I was debilitated by IBS before becoming ill with ME/CFS so it is much easier to know when something is not ok to eat. And all my weird, extremely rare reactions and intolerences to medications and supplements have become such a long list my medical file only lists meds I had deadly reactions to. The others are under the blanket phrase “Many negative reactions and intolerences” .
As awful as it is to react so violently to food, being laid out for days waiting for my gut to heal is a great indicator of dietary intolerences. I certainly don’t make the same mistake twice.
I’m sorry for how insidious your intolerences have been. It has to be awful trying to figure it out.
I am so grateful for this community and this website. It was back in 1994 that I first was aware that I had to quit working as I just didn’t have the energy. There wasn’t much information around especially in the medical community about chronic fatigue syndrome.
I was never sure what caused it. I had previously had a major car accident and a near-death experience. The body had gone through a lot of trauma but I had not since I had the near-death experience I was extremely happy. I also had made a first trip to India and taken a vaccine for meningitis. I I had a very strong negative reaction to the vaccine. I also took weekly the new pills for malaria which made me a little crazy.
I’m pretty sure one of those three things with the root cause of the CFS.
I went and explored things with doctors that soon figured no one knew anything about what I was going through and couldn’t understand it.
I’m curious and was hopeful that this would be in the survey … how many people feel they know what the cause of their illness is. Possibly if we looked at trauma or illness before the disease we could help find some pattern
I was extremely healthy before ME, however too active & overly stressed when I contracted the flu & developed ME. I have a good holistic doctor who knew I was very ill, was empathetic BUT she used terms & treated me for adrenal crash, post viral fatigue, sent me to a fatigue program which taught me pacing but labelled the illness CFS & gave me an expectation that GET was the goal. Lack of early diagnosis of ME & necessity for a year off would have been a game changer. I’m so angry with the medical model. Not my doctor, she just followed protocols she’s been taught. Bring on the class action & an apology from all the departments & governments who’ve allowed this.
Yes, we should all be able to file a class action suit. Where do we start?
My biggest regret is that I didn’t know that the exercise I did every day was actually hurting my health. Even though I felt terrible, all that seemed in my power was to follow the advice that working my body intensely would help my fibromyalgia. At the time, I had “ chronic mono” on every blood test I ever had, but simply didn’t focus on what was regarded as “ voodoo science”. No matter how many doctors I saw, this area was never discussed. The end result is of course a diagnosis of ME/CFS. Now I feel fortunate to be able to walk freely in my home on days I don’t need my walker.
Dear Lynda, I totally agree.
I was a fitness coach for many years and movement in any way was my passion, made me feel happy. Had i listened to my body with faith instead of the advise of my rheumatologist (==> to increase my exercise) i guess i would have more life quality today.
It took several years of searching and fighting until i finally was diagnosed by a specialist team far away from where i live.
ME needs to be taught in medical school.
Until this day most doctors think the roots are in the psyche of the patient.
Yes, I second the need for it to be taught in medical schools!
Still they tell me to exercise more!!!! I love athletics. All I can do is hopefully stand to wash dishes. Or not get too fatigued taking a shower and not be able to work !!!
This type of survey doesn’t seem very helpful to me. Each choice we make is a gamble, and has advantages and disadvantages. Sometimes the gamble pays off, and sometimes it doesn’t. For every person who regrets a past decision, there is another who says, “I wish I had made that decision sooner.” Moreover, sometimes it’s impossible to know whether a past decision or action has had harmful or helpful effects. JB and others may have gotten sick regardless of their diet; and the converse is also true, that some people remain healthy despite eating a “poor” diet.
We’ll see how the results go, but there’s nothing the matter with ambigous results. They provide an important data point. If this survey turns out like the last one, though, some clear themes will likely emerge.
I would like to see a survey about what we did do that made a difference. My CFS/ME journey began when I was 48, way back in 1990 when fibro wasn’t on anyone’s compass. I had been doing 45 minutes of low impact aerobics for 45 mins at least 5 days a week for years. One day I exercised, felt crappy and thought I had the flu. I felt like I had climbed Mt. Everest and for the next few days had to sit in my recliner. Luckily my son had a relaxation ‘tape’ that I listened to for 45 mins for 3 months. The countdown and relaxation became so ingrained that all I had to do after that was begin the countdown and would have pain relief. For all these years this has kept me off pain meds. The chronic fatigue is a different story. Luckily, I had to have oral surgery some years later and was prescribed heavy dose of Amoxacillin. wow. I was 20 again. I told my M.D. and he said they were having some success with Doxycycline so prescribed it. I took it for years and it was effective enough for my chronic fatigue that I was able to continue working until retirement age. Recently, however, with the antibiotic scare my new MD says they’re not approved for my condition and I haven’t taken them for several years…..going downhill all the time. Thank you so much for your work. It has helped so much to be able to find new studies and comments that are relevant.
I appreciate this thoughtful survey. At least; it will remind us to reflect on our day to day decisions regarding our health; at best, it will help others to avoid some of the poor decisions that contribute to declining base-line health. As a lifelong dancer, I was literally trained to push through pain and work harder. In hindsight, this was obviously detrimental to my condition, prolonging the push-crash cycle until becoming completely disabled. I also developed Mast Cell Activation (ugh!) which perhaps could have been avoided. However, I don’t spend time regretting or beating myself up about the past any longer. I am now in a place of acceptance, & determination to make healthy choices, mind, body, & spirit. Thank you Cort for this survey, & ALL you do for our community. <3 🙂
I tend to agree with Tim. I think I did the best I could with what I knew. I feel I have been mostly on my own for the past 32 yrs since I’ve had major symptoms. I’ve been overly sensitive since infancy, so am sure there is a large genetic component which we can not control. I’ve been aware of good nutrition since high school. I do, however, wish I hadn’t fought getting help for the depression earlier. BUT I’d seen how my big sis was drugged up into being zombie-like back in the late 70’s and was afraid they’d do that to me! I waited until I was about 40 to accept help, but when I told my Dr “I think I might have chronic fatigue syndrome,” she said, “Well, we treat that with anti-depressants, and I’ve got you on those, so see you next year.” !!!
PS: That Dr had told me I had mono 2 yrs in a row~I requested an Epstein Barr titer, which was negative. That’s when I figured out I may have CFS, which I learned a few yrs ago (on-line ) is now called ME. I don’t have a severe case, but I can’t work anymore. Haven’t been able to work full-time for many yrs.
I regret overriding my instinct when I knew medics were doing me harm – but I kept on ‘just in case’ because ‘what if’ the next moment was the one where the treatment would help? I regret it, but I couldn’t guarantee playing it any different, past or future, because we can never know at the time and hope is a double-edged sword…
I agree, Sue.
I kept following medical advice to see specialists ‘just in case’ and also, because I had faith in the orthodox medical system at the time and didn’t know any better.
I knew instinctively from about 2003 that something was really wrong and it wasn’t just ‘all in the mind’ like my family and work colleagues insisted. Unfortunately, I had old orthopaedic injuries and a teenage spinal condition which was not diagnosed or treated back in the late 1960s. If only I had known all my body pain was NOT connected to my spinal condition, but a separate issue, I could have sought medical diagnosis and help earlier.
Like you, it’s only in hindsight, I couldn’t guarantee I would play it any different if I had the last 39 years again.
Like most here I would have rested completely until I recovered from the pneumonia that seems to have triggered my MECFS 21 years ago. I had two small children and a job though so figured of course I’m tired. I self diagnosed about ten years before my doctor was willing to give the diagnosis. Nobody knew about pacing or PEM then, at least not in my world. I was told to exercise to help with pain. Being the overachiever we tend to be in this group, and already athletic, I Way overdid it and seriously damaged my health. Then I got the swine flu and that knocked it down another few levels. Who-hoo! I would have gone gluten free sooner, would have trusted my own diagnosis and sought out someone who might have been able to intervene sooner, but that may not even have been possible then. Pacing, resting, not pushing all the time. Could have should have would have.
I’m a UCSC slug too, Cort. I don’t think it had anything to do with my current date of health except perhaps the drug use and maybe that terrible granola they had in the cafeterias!
Me too. And Lyrica was only one that helped for any length of time. But it caused my hearing and cognitive perceptions to go haywire. Took 8 months to return to normal !!! And now mention of that in earnings
I also agree, Sue.
In my case, it applies just as much to alternative/integrative/functionalist practice as it does to conventional Western medicine. In fact, I find alternative practitioners even more dangerous because of their supreme overconfidence: I’ve never met one who isn’t fully convinced that with the right therapy/supplement/diet/detox regime, I can get my life back. This gets my hopes up and leads me to question my self-observations when treatments seem to be doing harm. But now, in retrospect, I realize that unconventional medicine has not only failed to help; it has led to some of my worst setbacks in recent years, with the added bonus of great financial costs.
Pro tip 1: Beware the shot-gun approach: when you’re prescribed a big megasupplement regime and promised minimal side effects. (The functionalists I have seen don’t understand just how sensitive ME?CFS patient are.)
Pro tip 2: Never accept a diagnoses of “adrenal fatigue”. (Instead find a good endocrinologist and see Ari Whitten’s online critiques.)
I ended up believing that whatever approach a practitioner took, was what they would say was wrong with me. As they say – if all you have in your toolbox is a hammer, then everything is going to look like a nail.
I just stopped trying out different therapies because I ended up knowing more than them, in some cases.
Also it was too expensive.
Also I only had enough energy to do one ‘extra’ thing a week, so I was just too tired and tired out by investing my hopes in alternative therapies/therapists that didn’t work for me.
I was also attending various clinics: gastroenterology, cardiac, ENT – thyroid, respiratory – asthma, gynaecological, immunology and I was referred to an endocrinologist but they never replied. Two years ago I was referred to the Opthalmologist – macular degeneration in left eye but there are long waiting lists here in Ireland, so I haven’t been seen yet. Nothing really showed up.
I had the same thing, but with alt health. Went through a naturopath, two different supplement with about 28 individual compounds for 6 months with no apparent benefit. Added another compound (NAC) immediately didn’t feel great but the naturopath’s words at the very first appointment ‘you’ll feel worse before you feel better’ made me push on and ignore that same instinct for self-preservation. Four weeks later and suddenly feeling depressed, sad and over it over the course of two days, I cracked the sh!ts and chucked all the naturpath supps in the bin. Feel better withing 24-48 and continue to.
I’m not against the alt health stuff, but sometimes our bodies know best and we need practitioners that tailor the treatment or adandon it. Not just encourage us to push on – that’s what got most of us where we are in the first place. I still need to regularly remind myself to pace.
Cort – because I became symptomatic in 1995 several of my answers were different than if I had developed symptoms in the past 10 years or so. Next time you might take into account time/age and severity.
I would have listened to my body before getting sick. Also, I wish I would have stayed away from iv antibiotics.
Thanks for the survey! It’s interesting to see the responses. So many of us wished we had paid attention to our body earlier. Our society is so “action” focused: work, family, exercise, hobbies, classes, on and on that it doesn’t seem to leave any time to pay attention to one’s body. Even advertisements tell us to not rest when we have a cold or a headache – Don’t rest, just pop some Advil and keep going. A lifestyle that doesn’t allow for rest, or quiet time, or down time, is unbalanced and harmful.
I agree with you Janet 100 per cent!
I agree 100% … my biggest regret is that I did not immediately slow down, rest, change my life away from so much action-focus … BUT that isn’t always possible. I was a single parent, needed to be a mom, needed to earn an income, had no access at that time to disability or any form of financial support. I was self-employed. So some of “my” regrets are really regrets about how the system to help me was nonexistent. It took me six years to get a diagnosis; I had to keep on being a parent and a wage-earner for that time period. On I went, crashing, struggling along, crashing … If only the ME fairy godmother had appeared at the start of my illness, and told me to lie down and rest, while she brought home the wages and cooked the dinner lol
i reached 64 years of age, that in itself is a miracle. i’m a post liver transplant recipient due z(2009) to having non-alcoholic, hepatitis C since 1987 (may have been earlier). my dr. checked me for mono, several times. it wasn’t until he did a liver lab work, up that i got the hep c diagnosis. just before turning 60. i had a a major depressive incident and was hospitalized. the dr’s concluded it was bi polar. i feel strongly that it wasn’t, but that it was M.E. to date, no dr’s in the state of maine, or mass. who work with people like me. the misdiagnosis is still haunting me to date. if i got an appropriate diagnosis, it would mean so much to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! even tho, i know that currently, there is no diagnostic test and no treatment. i still have hope, if not for me, for the children, and the future M.E. patients.
If you have Hep C you do not have ME/CFS that is certain
That is only certain if you see ME as an exclusion disease, meaning that if you have anything else then you don’t have ME.
One could easily argue however that “not having anything else” is included in some criteria because science lacks knowledge about what ME actually is.
For example, if one had ME first and only years later one contracted hep C, would that cure the person from having ME? It ain’t that “easy” to get rid of ME. I don’t see the contradiction in having ME on top of another more known disease.
Maybe just my journey, but had every kind of hormone therapy thrown at me in the early years beginning in 1995 before a diagnosis. Wasted money and created early menopause. 10 years later, lucky enough to go through menopause a second time!
I would have stopped drinking alcohol sooner – as soon as I felt unwell. That should definitely be on the survey.
I got sick while traveling and drinking a fair bit (maybe 10 standard drinks every 2 days for 5 weeks), so I would have drastically reduced my alcohol consumption prior to getting sick.
I would have stopped staying out late with friends.
When this is survey is complete, I plan to share with my adult children. We don’t know if there is a genetic predisposition but there is evidence that this runs in families. I do not want my children to succumb to this illness! My children are both very ambitious, and my son in particular really pushes himself. I’ve spoken to him already but I think seeing the input of so many of us may have more of an impact on him. Thank you, Cort, for posting and to everyone responding to the survey.
Almost all of my major downturns (over 20 years) are due to medical interventions–either testing or medicines. I wish I had learned to Just Say No, when docs’ recommendations/demands raised red flags.
Me Too….:-(
I agree 100% with this. After nearly 30 years I can look back and see the worst times were always a result of medical intervention from doctors who ploughed on relentlessly and leaving me in a worse state.
Dr’s do dangerous things when they don’t understand what’s going on! I was hospitalized for a week, had to be on IV’s, couldn’t eat anything, because a Dr put me on medicine for high blood pressure which I didn’t need (instead of figuring out WHAT was raising my BP~which I had to figure out on my own, like everything else!) causing ischemic colitis. The GI Dr in the hospital described it as a “STROKE” in the abdomen due to my BP going to low, at which point I passed out, and was too sick to even get upstairs to tell my hubby how sick I was! It caused cramping and bleeding in the bowels which is very painful. Turns out MANY things cause my BP to rise. I have a whole page or more of things (mostly meds) that raise my BP and pulse, making me feel anxious. I first noticed it from anti-histamines for fall allergies when I was in my 40’s. I can’t even take high doses of B vitamins, and have to check every herbal ingredient for side effects, I’m so sensitive. Just cause it’s “natural” doesn’t make it safe!
I agree 1000 percent!
My blood pressure and heart rate would increase dramatically over the last few years when I ate chocolate, especially dark chocolate,
Also food I have difficulty digesting.
Ibuprofen and Antihistamines alter my heart rhythm. Possibility other medications would to, I just haven’t tried many.
I’m ok with supplements.
I wish I’d formally recognized to myself (sooner than 18 years in) that my heath is my single most precious possession. And, that anyone who does not recognize or treat it to be the same is not in a position to offer safe treatment, good advice, or appropriate feedback on my person, my choices, or the appropriateness of my questions, fears and decisions. Because this means that they have not yet recognized that their health is their own most precious possession (and therefore, cannot be trusted with mine).
…but, that’s (most usually) only a lesson one learns through experiencing serious illness first hand, and wrestling with the effect that it has on every aspect of life, over many long years. Can we learn from ourselves, or from each other, earlier than we do learn? I’m not sure…but I hope so. 🙂
MarthaLauren, you have said such an incredibly important thing. I wish I had realized the same, and not taken my health for granted. But when I gently try to make the same suggestion to others they reject it, and pile things onto their load, just as I did prior to getting sick with ME/CFS. This is a big social need, I think – to make people aware that their health is their most precious possession.
Thanks Cameron. Yes, let’s spread the word, shall we?!
Actually, I think many people likely do recognize the inherent value of their health (as health is integral to life). (If they do not, it’s mostly because they are still feeling young and invincible.) But because in this (Western) culture, we are taught so little about how to care for our bodies/systems, the topics of health and illness mostly tend to cause a reaction based in fearful avoidance and distraction, just as (I think) you’re describing. (I have observed the same in people around me…even as they are beginning to feel the strain of something not feeling quite right…somewhere inside.)
I believe the subject of health has been presented to us (in the US, at least) in a way that it has become attached to extreme feelings of disempowerment (and uncomfortable dependence) for most people. So people who have not been affected by illness, or, have not been affected in a way that forces them to question that model, often react to the subject—however it comes up—by busying themselves and just silently hoping (and praying) for the best.
I can’t fault them for it: I’ve done plenty of that myself. (But not anymore!) I’m not sure how to help bridge this gap, but I’m thinking a lot about it. 🙂
Best wishes,
Martha
In our culture success is seen as make-able. We are told we are the persons responsible for our success or failure.
It is a powerful motivator to “know” everyone can reach their dreams from whatever disadvantaged position people are in.
It is even more so a tool for the rich, powerful and successful to claim they own all their riches due to their own hard work and own no-one else anything and need not to give back to society and those in need as those only have themselves to blame.
Essentially, this believe in the make-ability of society is part of its core fabric justifying plenty of rules, laws (or the lack of them) and power balances.
As such, health is make-able to to a large extend. When it’s broken, you go to a service station to fix it like you do when your car is broken. In order to pay for it, you work harder when still healthy.
When health is a commodity, you have no role in it but to either consume diets, mental courses, exercise equipment and fitness access when still healthy or to go to the best service station and let the professionals do their job when broken…
ME patients hold a broken mirror in front of people not only regarding control of their own health but also regarding to the values and fairness of life and society they live in. That can be a harsh confrontation.
It’s easier to say what I’m glad I did from the beginning. Seeing a Integrative Functional Medicine Clinic. Not taking prescription meds. Belonged to a meditation group before onset of symptoms and staying with meditation through the years. Adding recently Somatic Therapy and prenatal nutritional powder rather then piecemealing multiple supplements.
I have an ambiguous reaction to all these regrets, these ” I wish I had…” I recognize they could be useful for future patients but.. My psychologist helped me a lot realizing that this disease was not my fault. I did not induce it, like people do not induce cancer on themselves. Being sick with whatever is a humane condition and if medicine can help, it’s great. If it can not for whatever reason, well, let’s keep working at it.
We all struggle to understand how we could have come down with these dreadful disorders but, as a psychologist, I’m struck by the high scores on questions relating to “overdoing it”, being too hard on myself, etc. Do people really think that poor dietary habits, striving “too hard”, and so on, caused our disorders? There’s no data to support that, probably more data, if correlative, to suggest a percentage of sufferers were traumatized or sexually abused. Go easy on yourself, folks, these disorders’ etiology is still a mystery and very likely not due to anything you did or should’ve done.
Steve, I have to agree with you. There’s entirely too much self-blame in these responses. (I too am a psychologist.)
I don’t at all think my behavior caused this. I do however recognize that following the advice given at the time worsened my physical health. I’m not a psychologist but was an MFT (well, MFCC, to give away my age!). I don’t see people blaming themselves for getting MECFS, rather they are acknowledging that some behaviors contributed to worsening their condition. There is some appropriate anger as well, for the misinformation received and taken. I hope there will be breakthroughs soon, for all of us.
I think regrets, when left just as regrets, may not be super useful or healthy to focus on (as several people have pointed out in various ways above). I agree that for the most part we are all trying just our best, with exactly what we know, at any one given point. And though hindsight is often better than foresight, it is not 20/20 (though we often tell ourselves it is)…we cannot really know what would have happened if…(Again, as several people have previously pointed out.) For that reason, and for all reasons in general, forgiveness for all past mis-steps (or anything perceived as possibly such) is key.
In fact, it was interesting for me to read down Cort’s assembled list and note to myself that though some part of me could agree with most (because I have felt regret, or stress, around many areas listed), I can also think back and know exactly why I did not do each thing (whatever it was)…I didn’t have the support…I didn’t have the knowledge…I’d suffered too many adverse reactions to continue to extend my trust too easily, even though I agreed with the central theory behind the next proposed treatment…etc.
So I actually learned from the above list how few true regrets I have. (Which is helpful for me to know.)
I also think it’s helpful to consider my most personal “regrets” (I wrote them down for myself in response to this blog) and ask myself: am I at least doing “right by myself” on that same front, now? (Is my past regret appropriately informing my present and future?) The guilt and depression attached to regrets can immobilize and depress us (often more so when they are not voiced, acknowledged or confronted directly). But I also believe the hard-won wisdom gained from our regrets can truly inform our futures for the better.
Thank you for posting on this interesting topic of thought and discussion Cort!
I was in a high-stress job, and I worked for three or four years in a horrible basement office with poor air quality. Exhaust fumes were coming in from an underground parking garage.
But there weren’t many alternatives for somebody with my skills, and after I got sick, I wasn’t able to look for a better job.
On the other hand, I was working for a state agency and was able to take disability retirement that paid enough to live on (after 11 years of being sent for a medical evaluation every year, always by a doctor who eithersaid it was all depression, or was totally clueless).
I got sick in June of 1984. And a year later, while I was in partial remission and still working, I read an article in the New York Times about a mystery illness. I knew immediately that was what I had, although it didn’t even have a name yet. And when I crashed again, my doctor tested for Epstein-Barr and diagnosed me with “chronic mono.” So I didn’t spend years wondering what was wrong and being told by friends, family, and doctors that I wasn’t sick.
There isn’t an option for “Would not have used sleep meds.” But that’s a top wish of mine. I took temazepam regularly for most of a year, and I formed no long-term memories during that period. It’s like I lost a year of my life. There is conclusive evidence that sleep meds do more harm than good. That was certainly true in my case.
I’d be sort of interested in seeing the poll results from both surveys side-by-side (although I realize they aren’t identical and so this could be problematic). I remember taking the first poll, and it’s hard to believe that it was six years ago. I like being asked what I believe I would have done differently. I don’t take my answers as any kind of condemnation, only a chance to look back and reflect on my beliefs and behavior. This could point toward ways I might best help myself now. Also, if any of the suffering I have experienced could help someone else, it would give meaning to what otherwise I is meaningless pain. Thanks, Cort. As usual, a bang-up job.
The biggest things for me are not diet (which was pretty good beforehand), or exercise (dogs and gardening kept me reasonably fit) or even a good GP (because I was lucky enough to already have one!). All incredibly important, but I’m lucky those things were already in place. But two things in particular – I wish I wasn’t a workaholic (definitely doesn’t help) and I wish that my partner and I had gone to relationship counselling earlier. Because having ME/CFS is having a third, pretty overwhelming, partner in the marriage. Having a mediator and a safe space in which both of us could talk about the impact of ME/CFS and how we manage it – that’s helped enormously. We concentrate a lot on the physical and mental side of this illness, and sometimes fail to acknowledge the emotional impact on ourselves and those close to us.
Putting my health in the hands of the medical profession…… they did this to me my unborn baby ,7mths pregnant( born allergic to so many foods, vaccines, etc) and my then 2 1/2yr old daughter……We were given the drug FLAGYL, for a Giardia infection.. back in 1987 It wrecked my/our BICOBIOME, causing leaky gut and as we lived in a agriculture area, (lots of pesticides/herbicide) we developed CFS/MCS. The 3 of us house bound, and NO life for 15yrs…. THEY DID THIS TO US……………….
I would have gone for acupuncture treatment sooner, or alternative therapies, as this has been working for me over the last 3 years or so, but this option was not on the list.
You do have to be patient and go regularly but I would have.had to give up work by now without it
I would like to know what year people got sick. It hit me in 1990 when doctors knew nothing, told me it was all in my head and even ridiculed me, as did my two M.D. cousins. It wasn’t until 1999 that I found a specialist. It meant for nine years I was nonfunctional with no guidance on palliative meds/supplements, , pacing, or support. I didn’t try for disability for four years because doctors told me nobody would give it to me but I got it first round, with no appeals, I was clearly so unable to function. Before I got sick I exercised daily and ate heathily so no bad habits triggered this,
Little has changed after 30 years. It makes me sad. All those people and their stories who have lost their lives to this disease. And then also have to fight against the power and interests of short-sighted so-called experts. I have learned to let go of my anger. I would recommend this to everyone. Yet a smart scientist will someday find something that leads to a breakthrough. I still believe that. Everything that is crooked will be straightened, that is how nature works. All the experts who have treated us badly and make fun of us will have to deal with karma, that’s how the universe works. For now I am only sad about the loss of the health of myself and my fellow sufferers. Cort is always positive and deserves a ribbon!
I was prescribed Metylphenidate (Ritalin) and took it every day for two years, in order to be able to continue working 25% of full time, in a job I enjoyed. I hade been mildly ill for several decades, but this made me seriously ill. So please be careful if you want to try Metylphenidate.
I find it easier to write a narrative; I don’t think your questions quite capture my experience. I actually don’t regret anything I did. I became symptomatic in 2011 and have fairly relentlessly been trying (without success) to get better ever since. I certainly wish the medical community was more knowledgeable and that I didn’t, (a) run into idiot doctors, or (b) was able to find helpful doctors more easily. But it wasn’t for a lack of trying.
What I do wish for myself is that I didn’t let un-helpful doctors get to me. I knew I wasn’t depressed (yes, that was one I heard a lot). But other doctors told me I just needed to lose weight (I’ve gained 40 pounds over the years because I used to swim regularly and now am, of course, sedentary. Or–yes–if I just exercised I’d feel better. Or I just wasn’t starting exercise slowly enough (the old GET stuff).
I ended up feeling for quite some time, not that something was wrong with me, but that I doing something wrong.
I spent a long time not really telling people (unless I was close to them) what was going on with me because I was embarrassed. I found Dr. Systrom through your blog, and while his treatments have not been helpful yet, at least I have a provider who understands that I have a real disease that he wants to help me cure, or at least improve.
I wish that I had been able to try acupuncture and traditional chinese medicine sooner. This has been the most helpful intervention to date and my practitioner the most supportive, knowledgeable doctor I’ve seen yet. Chinese medicine doesn’t focus on diagnosis but instead focuses on meeting you where you are at in this We deal with issues as they arise. And simply being in the presence of a doctor who believes and trusts you is hugely therapeutic. This relationship also kicked off my deep dive into herbalism (a positive form of medicine) and getting back my relationship with nature.
I think I’d probably just wish I’d understood the mechanism of PEM/SEID earlier. I pushed myself for years (after getting ill) and just dealt with the consequences later. That said, I managed to accomplish things that I probably wouldn’t have done if I was too worried about the payback of PEM, so in some sense my blindness gave me power. Am I paying for it now? Like everything with ME/CFS, it’s hard to say.
I definitely would have found a CFS expert earlier. But in the early 90’s there were few of them around, and no internet through which to find them. I tried my share of “alternative” doctors, and recently spent more than a couple of grand working with a functional medicine doctor, some of whose treatment recs were actually detrimental to my condition.
I would like to offer that caveat to people who are jumping on the functional medicine bandwagon. Functional medicine is still a very new and polymorphous style of care, and just because someone practices “functional medicine” doesn’t mean they understand ME/CFS. I think it’s important to seek treatment by practitioners who either specialize in ME/CFS or have a good track record with treating it.
Oh, and I wouldn’t have gone vegan for 4 years (before getting ill). That was pretty stupid. I was starving myself and setting myself up for real trouble in my body.
Yes, I agree with eating meat. I wouldn’t survive without it.
Terry Wahl’s gave up not eating meat in her successful bid to turn her MS decline around.
l would have taken my daughter out of public school earlier, which would have eliminated the need for a doctor’s note for public school, which would have freed us from the trap of going to see a doctor who was not providing anything of value except doctor’s notes, and who was actively making her worse with toxic meds, which would have no longer made it necessary to use a week’s worth of energy spoons to go to town to visit the doctor — and, to extricate ourselves from the government/medical/educational complex that threatens medical kidnap to children with chronic illness.
On the other hand, perhaps it was necessary to go through this experience, in order to truly understand the malign nature of “professionals who just want to help…”.
The day we extricated ourselves, we could feel a heavy weight lifted from our entire household. My daughter was still sick; we still had no cure. But, we had gotten off the treadmill and could focus our energies on helping her. We cut the marionette strings and could operate independently to do what needed to be done.
Don’t be a slave to your government, your school or your doctor. Don’t let a Pain Management clinic dictate your life. Set yourself free. You’ll be glad you did. You have a right to make your own decisions regarding… EVERYTHING.
Can you please add options for diet and exercise before getting sick?
I exercised more and went on a supposedly healthy diet. Turns out I do best without some of the whole grains and veges I added.
Didn’t know I had POTS so cutting down on salt may have been a bad idea.
Suspect that the extra exercise was bad for me before I go ill as well.
Thanks you
Not enough options for prescription medications I wish I’d tried earlier. I wish I’d started on beta-blockers MUCH earlier. (Goes along with “wish I’d been assessed for orthostatic intolerance earlier”) I wish I’d been on Cymbalta earlier (I had to choose “anti-depressants” for that, but I take it for the fibro/chronic pain indication and it’s been very helpful for that.)
I have not tried very many supplements compared to some, but I regret ever trying any. “Supplements” are an expensive and largely worthless hobby, in my view.
First: Within a year of getting sick, I’d bought a car and left my bicycle behind. I am almost sure this had something to do with my health.
Second: When I first got sick it was with a nasty case of strep throat which the MDs piled on huge amounts of antibiotics which left my battling candida. My energy system never recovered.
Third: I would have stopped looking for a western trained doctor even sooner than I did. The only help I’ve ever gotten is from alternative types of medicine.
Stress seems to be a common theme here.
I was competing in a totally anaerobic sports before I got knocked out with CFS. When I practice 4 days a week, I’d get sick like a clock work, for weeks at a time. So I figured I could manage it by reducing the practice to 3 days a week. One day I made a mistake with scheduling, ended up practicing 2 days in a row, got sick again, and never recovered. My regret? Maybe being overly ambitious when my body was flashing red light. Funny thing is, I’m still over-ambitious as ever, still doing things contrary to what my body seems to tell me. And the result often surprises me. (As long as I stick to pacing, that is). I have a feeling that my personality will either kill me or cure me at the end..
I can relate! Behavior is really hard to change.
Happen to have (strongly) increased adrenaline levels (like most of us with fight-or-flight symptoms)?
Then know that high levels of adrenaline encourage action, being ambitious, overdoing and so on while knowing better. It makes us ignore the cost even if we know better.
This year, I got on odd experience that something that I had fairly high confidence in that it would strengthen an ongoing improvement did at first weaken me a lot. It went hand in hand with a wave of decreased adrenaline / fight-or fight levels.
It was like I had half a personality change. I even skipped on the most basic things that I deemed essential before and I couldn’t care. So much less buzz and so much more rest in my head. No urgent needs to do things except only having to go to the toilet and eat when it was really necessary.
Now I’m in my third wave of decreasing adrenaline and can do more then before. Still, my personality is far more relaxed and does no longer seem to have the desire to do the impossible.
I participated in a weight-loss program through a hospital that had me fasting for over a year. I believe the stress this place down my body and immune system set me up for contracting chronic fatigue syndrome. Looking back on the years since, that is when I started noticing the slow decline in my physical abilities.
At the time that I was diagnosed with fibromyalgia and then chronic fatigue syndrome, it is interesting that a colleague with whom I work very closely, also came down with chronic fatigue syndrome. It makes me wonder if there is some viral component as well
Since I have had fatigue for such a very long time, many of the behaviors, knowledge, or doctors did not exist until relatively recently–and even now there isn’t so much help out there. Getting into Medicare and having the ability to go where ever I want (Stanford, U.C.S.F. etc.) rather than Kaiser has also been hugely helpful.
God Bless the Internet and my stubborn personality! Where as a questioning personality trait has now morphed to a more confrontative style–especially on being offered ANY new therapy (especially drugs). Yes, I still try new things, but only after exhaustive (almost a pun) research, pro and con. I also do research and make the case for certain testing and treatment which might not be otherwise suggested. Knowledge is power–especially with medical folks–and don’t forget ‘second opinions’ if you aren’t getting what you (reasonably) want or need.
My biggest regrets, which I have whether or not I ever contracted CFS, were not having enough fun and staying in toxic relationships. (And I’m STILL in one–but it’s complicated).
Now for a small additional report on my Stanford treatment with Apriprazole. I have (on my own judgement) slowed my titration quite a bit since I am more drug sensitive than most doctors appreciate. I’m having some small side effects, but surprisingly I have a noticeable drive to accomplish plus a moderate increase in energy, but unfortunately, even though I am getting much more done (with the help of a morning dose of Modafinil), by early evening I ‘die’ and end up going to bed much earlier than before (which may be a good thing, but doesn’t seem to contribute to my overall energy).
I suppose one of the almost too obvious things for the list, is to pay attention to what actually does work–consciously think about it–often.
So, in summary, I guess we do the best we can with what we have…
I’m so glad I DIDN’T follow the dumb advice doctors gave me when I was first sick in 1990. Things like “Maybe you should start drinking coffee.” Ack!
But nobody knew much about it back then. Doctors I saw didn’t even know that there was harm in pushing yourself.
The best doctors I ran into were authors of books. All those books about ME and CFS really helped me. And all the fellow patients in support groups really helped.
In the regret department I can only offer a hard learned lesson to others: For 33 years my classically flu-induced CFS presented as mild to moderate in its intensity. I was very fortunate to carry on a basically normal life. My single restriction was not being able to condition.
Then came age 65 when I received the genetic news I had the apoe4 gene for Alzheimer’s. There being only one proven hedge against the disease, I decided ‘Oh what the heck, I’m going to do a mere 90 seconds of intense exercise daily, see what happens.’ And that experience was glorious for four days. Then on the fifth morning I woke up feeling very changed. I had profound PEM. And now at 69, four years after that day I am remain stuck at approximately that same level of impairment. My life is now vastly more restricted than before. All because I recklessly exercised four those straight days of exercise.
Moral of story: never ever over-do on successive days. Decades of plateauing at one level does not confer immunity to permanent reduction in function level.
I think that’s an important lesson and one that we’ve heard many times on this board.
I was even told by my doctor (dr Podell cfs specialist) not to over exert myself, but I had had the illness for 15 years, and in 2012 decided to really try to push my limit
With exercise, swimming, even jogging. I really pushed (I think I just wanted to feel like a “normal” person) it hard and within a week I had to shut it down. 7 years have gone by since that time and my legs have never recovered. I am now only able to walk short distances. This is a humbling illness and let’s hope there is something out there that can help, I am optimistic that dr Ron Davis is on to something with the nanoneedle.
That’s truly valuable advice.
I WISH I had had the ability and support to find a knowledgeable doctor. A rheumatologist and a psychiatrist (not working together) diagnosed fibromyalgia, each had me so drugged up for pain that I fell off a ladder and fractured C-6 & C-7. That and a flu shot started a cascade: fatigue, depression, and increased pain. Due to double curve scoliosis, I had a hip transplant (with the other hip in the near future), 3-level cervical laminotomy, T-10 to sacrum fusion. Now I’m facing a knee transplant and bi-lateral hand joint surgeries. I don’t know anymore what is the source of the pain and fatigue, depression has replaced who I am/was. There’s no energy to leave the house or to locate a psychiatrist now that I’m in a strange city (spouse’s relocation, glad to have the healthcare). At 64 I’ve pretty much given up—last hope is to move to a state that offers medical marijuana (I live in Georgia where you have to be on your deathbed). I’ve learned on this website that it has helped some of you.
I wish that I had realized that other people really did have more energy than me. It wasn’t normal to have so much trouble with standing. I wasn’t a lazy slacker that needed to try harder.
Yes!!! I wish I’d understood how debilitated I really was. People who say we are just hypochondriacs who complain too much, are 180 degrees wrong. We actually don’t realize how debilitated we are, and we actually don’t complain enough or take enough care of ourselves.
Hear,hear. I totally agree Cheryl. I was painted as the slacker, the lazy child, the one who complained (of pain and tiredness) the one who was bad at sports, and so took it on board. I know better now but it took over 50 years. And I know better all thanks to Cort and Health Rising. Truly I have found more help here than anywhere else, including doctors, especially including doctors? Love you all?
I should have included that all this made me try harder and all my life I think I overdid it and be came a control freak to the point that now I am exhausted, almost immobile and in constant pain.
I wish I’d understood human biology better, in the sense of the importance of flexibility and agility versus strength and mileage. The importance of the “interstitial fluids”, and staying hydrated and mobile and supple. I’d have allocated half the time I devoted to “mileage” to doing Yoga instead. Oh, and I’d have done table-tennis or dancing as another form of cross-training; something with plenty of bouncing around and co-ordination.
Now I think that performance on the bicycle is better if you work on retaining flexibility; eg ability to touch toes, and to squat down. You might think you’re pretty athletic, and you can handle a lot of pain and do a lot of mileage, but you’d be even better if you’d worked on retaining the ability to touch your toes and to squat down! Even if you’d done only half the training mileage!
I would also have quit un unfairly stressful job very early after realizing nothing was going to change.
I would not have agreed to help start “Chronic Fatigue Syndrome”
Everything. All of it. 🙂
I have severe/very severe ME. The main reason I became so ill is because of my inability to stop doing too much activity per day I.e. not pacing correctly.
Pacing advice that saved my life: do what you can do on your worst day (your baseline) and do that everyday even on your good days then very gently bounce your boundaries e.g. if you can walk 10 steps per day then increase to 12 and see how you feel over the following days. Bring it back to 10 if you feel worse again.
It’s not easy but it could save your life.
Taking the drug Olanzapine when I feel very restless and over excited has also been a lifeline in helping me to stay within my daily limit
Not sure of your age, Kieran, but generalizing from my own experience I suspect age played a role in my major downgrade when I foolishly over-exerted four years ago. Of course we are all different but perhaps even more caution is advised as we age.
Cort,
Suggested option to add in “Prior to Getting Ill” category: Greater awareness of caffeine sensitivity/overuse.
A year or so before getting sick, I developed insomnia which correlated to an increase in coffee consumption. I went to the doctor and she told me I should be fine as long as I stopped caffeine intake by early afternoon. This didn’t work, my sleep kept getting worse, and I started getting frequent viral infections. I eventually came down with bad sore throat that triggered ME/CFS. Over five years later and I’m still disabled.
I’ve since learned that I’m hypersensitive to stimulants in general and have to avoid caffeine in particular. I believe that if someone had informed me about this possibility, I might have avoided this whole ordeal.
Bonus suggestion: “I wish I had found HealthRising sooner!”
Because there is a some evidence that ME/CFS affects the HPA Axis function (Hypothalamus/Pituitary/Adrenal), it might be a good idea to add to the poll that it’s helpful to be tested for Adrenal Insufficiency/Addison’s Disease. I’ve had ME/CFS for almost 2 decades. Adrenal testing and retesting early on with 24 hr. cortisol urine, morning cortisol blood ‘snap shot’ and more importantly 4 part saliva tests, which are easy to do and give you a real idea of adrenal function 4 x in one day, were absolutely invaluable. You can actually order the saliva test online with no Dr. order through CanaryClub. org. And you can order other hormone and thyroid tests as well. I’ve used their services for years. And there are Aldosterone measurements that can be done through your doctor, which ties into POTS, (Orthostatic) symptoms. So I take Florinef to help balance salt/potassium ratios. When we could see that my adrenals were at first flagging, then failing, going on full replacement oral hydrocortisone (HC) made the difference in me being totally bedridden to having at least some function in a day, being able to make a meal and bathe and so forth. It was interesting to see because my thyroid failed at about the same time and the same rate as my adrenals and back then, (18 years ago) it was suspected that it wasn’t the glands, per se that were failing, but the inability of the Pituitary to send the right chemical message to them to function. CT scans and other blood tests showed no antibodies or problems with the adrenal OR the thyroid itself, they just went kaput!
Same issue with thyroid and adrenals.
I wish I had heard about EMFs (electromagnetic fields) earlier. I also wish the genetic testing had been available sooner so I could see why my body wasn’t as strong as others’. My genetics, combined with living in high EMF places, for most of my life was a horrific combination. It wasn’t until I became an EMF consultant and started measuring others’ homes that I realized I had been in a much worse environments than average.
I just want to point out that there are a lot of things in the survey which I have not done yet eg trying LDN, getting a heart rate monitor, getting a good ME/CFS expert etc. Had I tried some of these things I may answer that I wish I had tried them earlier. Im sure this is the same for many others. Still, I hope my survey info helps.
I pretended I had adult add to get stimulants. Of course they helped get me to somewhat functional, but did nothing for a failing immune system and adrenals. They are a great band aid, but instinctively I knew I would have to pay the piper and figure this thing out in it’s entirety eventually. When pain, pots, neuropathy, and brain fog joined the picture, I could no longer deny my body and mind were in crisis. I finally went to a functional medicine doc thinking they’d put me on the right hormones, get me on the right supplements, and maybe I had a little of that Lyme disease I had heard about because of some famous people coming down with it….. I…had…no. Idea. Red pilled? I feel like I’ve had a red pill IV!
“A little of that Lyme disease” is kinda like being a little bit pregnant??
Hindsight is a wonderful thing but of all the mistakes I made I believe trying to exercise hard and “sweat it out” right at the start of this illness was what broke me. I had an obvious viral start when myself and my partner at the time came down with some sort of vomiting bug within hours of each other. She retreated to bed for a few days whilst I hit the gym. The rest is history as they say. I always had this pet theory (which I am sure is completely flawed) that somehow the immune system got confused during this infective period and started to recognise the normal metabolic byproducts of exercise as some sort of threat.
this is a reply to Nancy B: can we chat off line about your experience at stanford and specifically the Abilify? I was just at Dr Bonilla (saw the PA) for the first time today. Not too impressed with the one size fits all protocol, and the PA prescribed Abilify for my 16 year old. Seems like a drastic step based on minimal data but would love to know more. Did you research much, or just take it? Thx so much!
One of the things that was incredibly hard for me was the fact that I got ill and couldn’t work anymore, and therefore I got financial problems at the same time.
I was self employed and in the Netherlands that means that you’re not entitled to any disability benefit. (You should arrange that yourself. As about 80% of self employed people I couldn’t afford such an insurance, so I had none.)
Therefore, the only option left was to apply for social benefit, which took me too much energy. I took me 15 months to make all the arrangements (for social benefit, special/extra benefit for my dietary costs, cleaning person, etc).
I wish it would have been possible to get help with all this! Because this felt like ‘top sport’ for 15 months… Unfortunately, that doesn’t seem to be possible.
I had mono twice in high school — once after a 2-week barfing flu, once after a viral rash (“related to chicken pox,” which I’d already had 2x). Sensed that I couldn’t keep up with friends as I had, or run well enough to make the track team, but graduated (1980) and went on to college for one semester, where I was miserably ill and couldn’t manage coursework. Probably detoxed from parents’ cigarette smoke — tested positive for allergy, once home & reacting w/sinus infections. Oh, and candida issues after all the antibiotics they threw at me as a teen. BUT: IF I COULD CHANGE ONE CHOICE, BACK THEN, AT AGE 19, IT WOULD BE TO CONTINUE TO ATTEND AL-ANON OR ADULT CHILDREN OF ALCOHOLICS MEETINGS. The coping skills that I’ve gained in the past 9 years might have spared me so much wasted time, energy, and heartache, and I MIGHT HAVE FOCUSED ON MYSELF: MY OWN WORTH, HOPE, DESIRES, AND WELLBEING; I MIGHT HAVE FOUGHT FOR WHAT I NEEDED, AND LET THE REST GO AS INCONSEQUENTIAL.
P.S. — What I’ve found is a coping “toolkit” and a better perspective on life. No one has to “qualify” to attend an Al-Anon meeting, and anyone can go to an “open” meeting, so long as anonymity is respected. For what it’s worth, there are books, too, even some e-books/apps — if I had to suggest one for someone who can’t get to a meeting, I’d say the daily reader Courage To Change would be my “desert island” book, still offering insights as I’ve grown & changed (through all sorts of life-change & declining energy). End of “sales pitch,” thanks for letting me share!
Well said, Miss Amelia!
This disease tests us so much!
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I could only find one box to tick: the one about joining a online ME/CFS forum earlier. Yes, it would have been nice to know what were the two treatments that I would discover worked for me, and which things to avoid, but wishing for precognition is rather pointless. Likewise, I could have saved a lot of trips to doctors if I’d known from the start that I had ME and that doctors couldn’t do anything helpful for it.
What might have helped is if the Canadian or international criteria for ME had come up on google before the American criteria. For years, the latter popped up when I wondered if that’s what I had, but I only seemed to meet a couple of the criteria. When I finally checked the other two sets, I found that I did meet them. I could have saved lots of doctor visits if the international criteria had come up first. Maybe someone in the ME education area could look into that, and get google to point to the most recent knowledge of ME.
Overall, I’d say that knowing that ME is a possible diagnosis for our confusing set of symptoms is most important. Knowing what the medical community can and can’t do about it is secondmost. Most of the other issues on the poll depend on the individual.
I would also like to know how long ME/CFS has been part of “Our Lives Un-lived”, whether it came on suddenly as mine did in 2007, and if parents and siblings are the very loved ones who are still so unbelievably judgmental.
I am blessed to have the most supportive husband, adult children and 10 grandchildren. And if not for Christ as my Lord I would’ve left this Earthly life on three different occasions due to this life-robbing disease. Thank you my friends…?
The most important thing I would have changed, aside from not getting the tetanus booster that may have triggered my ME, would have been to have realized much earlier that what I had was ME. I spent a long time trying to get help from the medical system for something that there still is no help for. I came across mention of ME/CFS several times over the years, but I found the US criteria (which is what google turned up first) confusing, so I didn’t think I fit the criteria. Eventually I checked the Canadian criteria, and realized that maybe I did fit. Then I joined Health Rising and Phoenix Rising and found that yes, I pretty definitely did have ME. I think it was year 13 or so of my ME that I realized that it was ME. I could have saved all that stress, and doctor’s visits if the criteria were less confusing, and it was better knows (by doctors or self-help media). For that matter, the Canadian healthcare system could have saved a lot of money if the first doctor or two had been aware of the signs of ME. However, I’m not sure whether ME was accepted as a valid disease in 2001.
For me, the most confusing part of the criteria is ‘unrestful sleep’. I don’t think there’s anything wrong with my sleep; it’s just that the ME symptoms feel similar to a lack of proper sleep.
It took me a long time to discover macrobiotic diet.
I also got angry and ‘went for a walk’ twice when I had severe symptoms. I had been unable to leave my bedroom without exhaustion and I got cabin fever & because hysterical. I did this walk twice. I needed to be calm & accept that id lost everything instead of angry and rebellious. Because I did these 2 walks I have had to use a wheelchair 20 years so far. I was improving till I did the walks. I was imprisoned & I exploded instead of carrying on lying still all day.