Discussion in 'General ME/CFS Discussion' started by overtrain, Oct 23, 2013.
And i felt like I wasn't doing enough...
Well, in that case, I hope you can understand that no one has any onus to read about your problems or respond to them.
Best of luck.
Just got caught up on this thread, and found your story quite interesting. Just a few observations/comments regarding your concerns about relapsing: --- It sounds like a quite a confluence of events led to your initial breakdown, and since you've been able to identify them, and I assume intend to avoid anything similar in the future, this bodes well for your future health.
Also, it sounds like you've pushed yourself most of your life, and have "over-exercised" a fair amount. You made a comment about being vigilant about not doing that in the future, and I think if you stick to that, it may be your most important thing to do. Paul Cheney once mentioned that he didn't notice any difference between the number of Type A and non-Type A individuals/personalities developing CFS, but did notice a BIG in how their illnesses progressed. I think he was referring to Type A's unwillingness to slow down and let themselves stay in a healing cycle long enough to fully recover.
I think cycles in our lives are important. When we are active, it's important to not overdo things. And when we finish an active cycle, whether for a day, or few days, weeks, etc, we need to honor recuperative and rest times. I think if you can do that, along with all the other things that have somehow brought you to your current improving health situation, then you should be in good shape. --- Thanks for sharing your story.
All the Best, Wayne
It's sad some attempted to hijack the thread with their own agenda. Back in the day, i would have let someone exhaust me jumping thru hoops doing what they can do for themselves. It's called codependency. And the issue isn't concern for the poster or answering her Q. which was already answered generously. If it was, someone would have stepped up & answered it FOR her, again, lol.
Had I posted about, say, Valerian Root, & someone posted along the lines of HELP, I think I just oded on Valerian, what do I do, even if I had written fifty responses to such a Q., I would have immediately posted back for that person. This isn't that.
Which begs the Q. about examining how one goes about interacting with others online or off; interfering, being codependent, causing unnecessary drama and in general behaving as the "should" police. You SHOULD answer in THIS way, you SHOULD break paragraphs like so & so says is right, you SHOULD answer shorter or longer, you SHOULD take part in a clear waste of your time repeating yourself because we say so. If it stresses you out, tough, because you SHOULD do what we say or risk our ongoing disapproval and, well, bickering at you for not being our malleable blow-up doll.
I'm someone on the other side of your screen, V., who posted about RECOVERING. That is amazing! Then a couple ppl focused on their own issues having squat to do with this topic. As the original creator of this thread, i can pull a "should" here, and say you should step off now. Anyone else interested in RECOVERY from this hell disease, keep the faith, because it IS possible! Cheers.
I took tons of supplements at the beginning and could pass many times for normal, of course I was sleeping 10hrs a day with many rests and tried to hide the critical times but after about 12 yrs I got sick of swallowing all those pills. I believe my health went downhill from there and I probably should have gotten into intervenous supp. but by that time I had little money and used the money I did have to better my location hoping a safer place and easier living would help with the slack. It didn't. So as long as you can take those vitamins and try different avenues to help your body, do them because age, accidents, economy etc. and other stresses are bound to happen. It's great about the remission but remember it may only be that - remission and be very careful with the exercising. I only stayed the same or got worse. Great post.
Wayne, thank you. That is key about type A recovery or not. Everything about American culture is type A. It's a kind of addiction. When I was in grad school for the second time (there's a clue, ha) I wrote THREE theses, not one. One of them got awarded best thesis out of several depts' graduating classes. So for me it's a C-22. Times I've gone over & above were when I saw results, not otherwise so much.
That's a great way of terming it: confluence of events. Def. was the proverbial perfect storm.
I need to learn more about listening to the body. I won't overdo it physically again, at least I doubt it, bc the 6 mo. window where I biked over 1,000 miles (distance from iowa city to denver, yikes) was only bc my cat lived in another part of the city & I had to go back daily & feed it. Never again...
That said, I STILL feel there is, in my system, a virus, a bacteria, a whatever that is foreign. It has seemed to cause those crashes I used to get. When I get overly tired, I still feel in from my neck down thru my chest, esp. Left area of heart. I did get a chest x-ray, have been told about left ventricular/heart murmur thing but was told it's just minor.
I'm lucky I had the means to rest more than others. Getting those means was stressful. But I did. Don't know where I'd be without it.
I hope you heal well, too. Keep me posted on your recovery if you'd like. I'm going to stay on the site, continue to contribute, update people, & advocate for us offline as well.
Wow, thank you. I hadn't thought of how events like, well, life, will keep transpiring with inevitables & surprises bc of my little illness bubble. This is the big picture.
So interesting in your case re stopping vitamins, the move, & exercise. I am SO sick of these supps. Every once in a while I can't do another day of twisting those blanking lids open & downing them. I know it's crucial to get them as undiluted, close to the source as poss, which sometimes means more $, too. Everyone I know offline thinks it's weird I buy all this stuff. They're healthy and I'm sick, so they think the reason is all the supps. Sigh. I do medline interactions, etc. i know my way around mostly.
Thanks again. Will keep on keeping on. And I hope you find healthier times soon. This may turn out to be just a pocket of better times for me as well. Time will tell. Crossing fingers for us both.
Fits what I was suggesting earlier, and more importantly, what others have found. My laymen's interpretation is that perhaps a virus or viruses, etc., may have been part of the picture, but the 'outrageous' overtraining (which screws up/suppresses proper immune function), plus inhaling all the toxic fumes from the cleaning supplies, combined with the mold, standing water, etc., may have been the straws the finally broke the camel's back. Not to mention writing three thesis papers…!!!
Here's one of several studies that talks about exercise and immune function:
They definitely can and do. But they typically flee the ME/CFS community because a majority often tend to become suspicious that they were ever sick, or "really" sick. That happened in our local group with the woman who was ill for 16 years and bedridden for two of those years -- she actually got very nasty emails backchannel -- just bizarre. I'll be fifty-gulp-six in a month, so I'm in the same boat.
Yup, there's a lot of emotions, and a lot of understandable anger. But anger (which increases stress hormones) gets in the way of healing every time. And just because others have been sick longer, or recovered in different ways, or said they had to avoid this or that before they got well and you'll have to do the same thing -- doesn't mean you will need to do so. We're all different.
Howard Bloom, who will be one of the patients featured in the "Canary in a Coal" mine talks about the mind-body connection, how suggestible we can be without knowing it, and also how everyone is different -- and also how (most) doctors are worthless (he's a little more blunt). But this series of interviews -- about 7 minutes each -- are worth listening to, at least #10-17 or so... IMHO:
Seriously? Well, where I come from, breaking up long stretches of text into shorter paragraphs because seriously ill people with cognitive problems may not be able to read long stretches of text, is called 'being considerate towards others'.
And, since many newer members don't realize that long blocks of text present problems for many members, the volunteer forum staff will break up long paragraphs and notify the poster that this is a problem for many here.
This is amazing. Thank you. Will watch/read these. And excellent point about suggestibility! Each of us is different in more ways than not, & I leaped to the conclusion if I cease supps I'm taking now, I'll backslide. I actually think the single most impactful act now is to restart yoga & meditation daily. Because in the end, I can't know for real how my body/mind is responding to ANYTHING unless I have deeper insight, really from far within. I think a fair chunk of this has been about observing signals that flew past me or I chose csly to ignore.
That's sad about the hostility toward those who get better, & that woman's experience. It doesn't surprise me. People are crazy sometimes. Easily threatened when ideally they'd open minds & hearts to learn. I'd think it'd be in their best interests to pick the brains out of anyone farther ahead than they are! I know I would, & do. Same story in general in life... You win a prize, say, in the art world, you'll be the wrath of any Jack or Jill you surpassed. Jealousy blows. Hard work and discernment, however, do not.
Doctors. Useless. The majority. I'm convinced via not just my experience, but via people I know IRL. To be fair, it's impossible to stay current with research. The system needs to change so doctors can be effective. Very complicated subject. I know now I won't see a doctor ever again unless I'm in serious allopathic-related misery only surgery can fix.
How long have you been ill? Anything seem to help you? Anything seem to backslide you? I recognize the complexity of our indiv sits., but then again, if ppl like us on sites like this can come up w commonalities, yay for us coming closer to answers.
Thanks again. )
I didn't even know Howard Bloom had CFS! I watched every clip; he's a pioneer in every way. What a guy. These are PRICELESS. thank you so much.
If you read the thread Sushi, sadly you will realise this wasn't a case of not knowing.
Hi can I ask how you did the flushes for the parasites? Thank you
HI Overtrain, so glad to hear of your great improvements and recovery. The anecdotal evidence is that if you are going to make a recovery it is likely to be in the first two to three years. Perhaps this is backed up by Lipkins findings that he saw a difference in the cohort ill less than three years compared to the longer term ill.
I will tell you something of my own experience. Not to bring anyone down at all, but to let you know how it has happened for me.
I had a long remission in the past - considered myself completely cured and i didnt do anyhting special to get there, except sleep an awful lot and have lots of gentle massages and hot baths. Maybe i moved toxins out this way, i dont think i will ever really know. I was 24 when i first got sick and was very very ill for the first 18 months and then started to gradually improve. I was at times bedbound and could barely walk and was in constant pain and had endless respiratory tract infections. By the age of 28 i was living a normal life, exercising (quite a lot, swimming, cycling, walking) i got married and had two more children, lived on the other side of the world and then moved back. Brought a house and did it up, settled into being a full time mum to 4 children doing voluntary work at the same time and running healing courses.
During this time i was very well when pregnant and breastfeeding, but the rest of the time i now see i was not 100% well - my stamina was not great and i had real problems increasing fitness. I still had a lot of infections so ended up taking steroids for quite a while. I went to the doctors a lot with varying weird problems, but essentailly i was ok. The doctors never found anyhting wrong and presumed i was depressed (i wasnt)
I told people i had fully recovered from M.E. I couldnt understand why others didnt recover also - after all i did. To be honest i didnt want to dwell on those awful years and turned my back on it all and tried to forget about it.
five years ago i caught measles from one of my kids, and then developed pneumonia, then pleurisy. This was after two extremely stressful years of building a house in a new part of the country and my husband working away from home all week and only coming back at weekeknds i was also working two days a week as a gardener doing very physically demanding work. I had started noticing that my ability to handle stress was becoming impaired and it was harder and harder to cope - i felt exhausted all the time. Determined not to be ill again i pushed through - thinking i just neeeded to get fitter ( a state that had aluded me for years) Then i had to have minor surgery - supposed to be back to normal the next day with no heavy lifting and i crashed hard and couldnt get out of bed for two weeks.
I then became extremely ill with severe M.E. It was considerably worse than the first time and has lasted for much longer - although i am now on a very slow recovery curve. I am still very ill though and depsite feeling much better than i did at my worst 5 years ago when i couldnt speak to my children or share a meal with my family and couldnt dress myself some days i know dont know if i will ever recover.
I am mainly housebound and have to use a wheelchair for 'walks' and trips out. I rarely drive myself and have no independance. I now realise, looking back that i was still ill with M.E in the intervening years but only very mildly. I put way too much stress and strain on myself, not knowing that this could be the consequence for PWME. My personal opinion is that remission, rather than recovery is what people are achieving - and that is great. I would happily go back to the only mildly affected if i could and am hoping to get there. Like Dr Bell has seen, many of his patients thought they were recovered when infact they have just improved some and then changed their expectations.
I do wonder if some people who bounce back quickly (i mean in the first couple of years) are recovered compeletley, and i really do hope they are, but my own experience shows that whilst you shouldnt be worrying about it all the time, being very careful is important. If i do get back inot a good remission i am worried that i will become uptight and paranoid. After all this illness takes so much away then when we feel well we just want to have it all!
Take care and all the best.
please excuse typos - this has taken it out of me and i dont have the energy to go back over it and change them all.
Black Walnut Hull
Dandelion Root raw
Chaste Tea Berry raw
Other raw herbs i can't recall
Milk thistle for a while
Got away from Senna... Think made CFS worse
"Para Gone" can get online or groc/drugstore- did that 2 or 3 times, whole protocol on separate occasions (meaning bought it & redid it each time)
Lots of cinnamon on food
Bentonite powder (got in bulk, put in empty gelcaps)
Lots of aloe vera gel (caution to females: too much will cause bleeding)
Flax oil or meal off & on
Garden of Life Super Seed
Grapefruits, juice, seeds as supp
Goldenseal pills & tincture
I don't recall others. Olive oil. For a time i had cinnamon ever day & ate a boatload of pumpkin seeds. I'd put the seeds in oatmeal or roast em. I def. could have targeted parasites better but I cldnt think for so long all I did was a basic google then went from there.
I hope this helps. Hulda Clark may have good info. Good luck.
Thought I'd post a link here to a story by an Australian woman who recovered from CFS. She's a very good writer who writes eloquently about he realities of ME/CFS, and her own spirituality. Here's a brief sentence from her story: --- "Restorative yoga, meditation, relaxation and my spirituality became a lifeline during the intense, raw, fragile and very real healing journey with CFS over the last 3 years. "
I read w much interest her story. She's right, too, in that ppl generally don't care about character, just rank in career. And she nailed the feelings I had going thru the worst, & the disappearing "friends", the fall-flat explanations by us & to us. The things ppl actually utter just astounding. Many of us have heard many on her list. I think it was ricky gervais (sp?) who did part of a comedy routine on ME. You know, treating it as a big joke. I saw the humor prob only bc i like Ricky, but he, too, nailed the general medical & societal reaction.
Thank you Wayne for the link, & i hope others find something healing there, too. I do think spirituality, however defined, is key as we go thru this life, but seems more sig. when faced w a nasty demise. I also appreciated how she described sense her organs were shutting down. I have never heard or read anyone say that besides me. Another "I'm not crazy" moment, brought to you by a fellow sticken.
@justy, thank you for using some of your energy to write this out. It's exactly what I'm looking for: stories, details, & past-present perspective. I hope writing it out let you gain something, as well, whether now, or in the future. And I'm crossing my fingers you get back to the plateau of mildly affected you once had.
The theme of pushing through, wow. That's so many of us, isn't it? Your story has been running thru my mind since I read it yesterday. I'm more dumbfounded than ever about the denial that goes on from all sectors about the REALITY of this condition. Denial, of course, until one goes belly up.
Take good care, & keep me posted how you progress if you want.
Thought I'd post back, as my original post was over a year and half ago. I believe I continue to improve. This has been so slow, but the gains still are coming. Which makes me wonder how much farther I have to go.
I took to heart Justy's story above, remember it often. In the past 30 days, I re-learned how to drive, got a license, bought a car, packed and mailed nearly 60 packages over 1,000 miles away, cleaned out my apt., drove two cats and I to a new state, stopping at prearranged spots along the route. Am now looking for a place to live and a way back to the career I had before this nightmare descended.
I walked for three hours today in the western heat. Three hours. That would have been nothing back in the day. It feels like I've graduated. Yet I know, if I don't PAY ATTENTION to my body, it may reappear.
I also know if I do everything RIGHT, it may descend again. That's how this plays out for many.
But right now I'm feeling hopeful and want to pass hope along, and to say that, back when I was outrageously ill if someone had told me in a few years I'd be able to plan then organize enough to relocate, much less buy a car to do so (& concentrate on & memorize the driver's manual for the test, & even remember which car & where in a parking lot I put it), I'd have thought it great surrealistic comedy.
Hang in there if you all can, people reading this. Good luck and STAY STRONG.
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