Discussion in 'General ME/CFS Discussion' started by overtrain, Oct 23, 2013.
That's fine. Just answer here. How long were you sick and how sick were you?
Congratulations. Keep doing what you're doing -- especially pacing yourself -- and I've read it's important not to set a date for when you think you'll be well -- and you should be fine.
I know at least a half dozen people personally who have recovered. A couple of them relapsed, but they're back to work now. The most famous is Ken Lassesen -- both he and his wife have recovered. Ken relapsed last year, but is back at work again, and he's in his 60's. Another woman in our local support group also recovered in her 60's and has been well for at least six years -- and she's also in her 60's. She hikes all over the place in the spring and summer, and skis in the winter. I'm insanely jealous. I also know a woman who was sick for 16 years, 2 of those she was bedridden, and for seven years she was housebound. She's been well for 4 1/2 years.
Don't believe everything you read.
Seriously. Not every statistic -- especially ones from the CDC -- are accurate. And also just because some people may have experienced feeling a lot worse during a relapse doesn't mean you will.
I'd kill to get a 'normal' flu, with a 'normal' fever, instead of this chronic low-body temp that's been going on for 13-14 years. I of course can't say what made you ill, but I personally think there's something more involved than mono or flu-LIKE-symptoms -- that other stressors (including environmental exposures, pesticides, heavy metals, or just pushing oneself waaaaaay past overdoing it) that combine to create the immune dysfunction that sets it.
But even after being sick for so long, I'm still confident I can turn this around. But it will be different for everyone, as everyone has different genetics, different exposures or 'toxic loads' that need to be dealt with in different ways.
It's inappropriate to repeat myself.
What a great post. Thank you so much for this.
Absolutely agree there's more to this - in my case, i sense it's VIRAL. I thought that from the beginning. It felt very viral and A LOT like when i got a one and thankfully only herpes outbreak. I think researchers are still in the dark about viruses in general. It's also true i physically overtrained to an outrageous point well past what normal people do. I was also using cleaning supplies twice a week i did not have choice about using. I had had a number of X-rays and then, already sick with mono, moved into a mold-infested place with roaches everywhere, even crawling on me at night. The rugs were very old, stained, etc, & apt. Complex had a central unit to unit type set up for air. There was standing water in the water heater closet. I wasn't Section 8, but anyone who had it there the gov. Made move as the conditions are so bad.
I don't bother w CDC anything. I only read this site and real ppls' experiences. It's heartening to read ppl in 60s can recover... I'm 51...
just seems so odd to be deathly ill then 2 years later functional again. I think i'll set my mind to forget ppl often relapse, & keep on thinking i'm the exception. In fact, it's weird looking back now, but from day 1 i told everyone i was going to be the exception and get over this thing. Did it believe that all the time? No, not at all. But i kept repeating the empty words when i didn't think they held value AFTER the last ER visit when i was too sick to even make final arrangements.
Thank you for the thought about not setting date on total wellness... I've been tempted to do so, esp. Since i want to relocate to AZ asap. I'm sorry to read how long you have been sick. Do you get a sense of what brought it on? I'm sure you have tried everything, incl doxy, to bring the temp down. You sound very positive despite it all. That's amazing. I hope you do recover. I too would hear a friend say they had a cold, or were tired, etc. & i'd seethe in jealousy. What a long, strange trip it's been.
Oh, come on. You know lots of us have cognitive problems that make reading long stretches of text difficult or impossible. You don't have to give a short summary, but it would be courteous to the more impaired among us.
One note: in terms of my attitude toward recovering and "being the exception" i in no way imply there any PSYCHOLOGICAL-hypochondriacal component whatsoever to CFS/ME. Yes, a mind-body connection exists (as if the two were separate, lol), but for anyone rdg this who unashamedly believes we're fakers gaining some benefit out of this, I DARE you to step inside any of our bodies for even 30 seconds to see how much longer you could take it without imploding. Good luck with that, mofo.
You're welcome to disagree with how I handled her post-order, lol.
To each his own.
My position is based on the fact that I don't post strictly to hear myself talk, so I try to make my posts easy to read so that everyone, even the more impaired members of our community, can participate. But that's just me. If you only want the most cognitively functional to read what you have to say, that's your choice. Fortunately, PR allows us lots of freedom in how we express ourselves as long as we aren't outright rude.
It wasn't an order. It was a person with extreme cognitive issues who uses as few words as possible which can sound curt. I do it to my family all the time when I'm doing badly. They understand now but used to take it poorly at first.
Regarding your good health, that's wonderful news overtrain, I'm happy for you. It seems that around two years is a very common time to recover. I haven't seen any statistics on the likelihood of relapse in anyone who has recovered in that timeframe but I would agree with those who suggest continuing to pace carefully and watch how you go
I tried detoxed before and I end up with a lot of body pain. I do detox baths but they really not good for my OI. I do juicing and detox tee everyday not sure if it is enough. Not I never tried L-glutamine, will read on it. TX for the tip.
Thanks for the Q. I unfortunately don't know what worked to turn this. I can go thru what notes i did keep and try to find milestones. Off the top of my head:
Supplements up the wazoo. Constant, continuous tablets, capsules, tinctures, chewables, powders, liquids, sprays. I was and still am continuously injesting wellness stuff. Dry herbs, anything. Protein shakes, green drinks, ayurvedic or chinese herbals. I ate a lot of tofu. For a while i ate no vegetables bc i cldnt stand them. Probably lasted for 2,3 mo. Where had to force self to open something canned like potatoes every once in a while, and i'm not a canned food type. Always did fresh food before getting sick.
I was not able to cook, and many many times skipped whole days of eating. I did frozen, canned, prepackaged foods. When i felt able to stand, i did a blender w fruit and soy yogurt A LOT (noise was unbearable. Only able to face blender sometimes, & then with earplugs & towel over head). I tried to have one hot item a day, like ramen.
Ate much dark, dark chocolate for about 4 mo. I craved it. I had cinnamon on everything for a stretch. Just weird cravings. Went on an icecream binge for the needed cholesterol for a few mo. Also craved Recees cups and chips, corn or potato.
Basically, i ate what i craved, as if pregnant. I quit flax oil bc i thought it was causing inflammation. Oh, i started taking herbal anti inflamms daily. Ate himalayan rock salt a lot every day. Drank coconut water daily as my body won't hold potassium.
Took isocort for like a year. Still taking thyroid supps. Took the lesser knowns like digestive enzymes, selenium,chromium. BIG diff when began probiotics. Felt way diff the first morning i woke up after taking the night before. Like i could think better! I ceased taking senna at all.
I did a few parasite cleanses, just pkgs bought at cvs type stuff. I also took whatever new thing i could afford at the moment that i read about here, often working for a little while then seeming to stop working. Felt heartbroken for a stretch to where i stopped rdg this site or if here wld not open forums w the latest 'this works' type info.
As an aside, not able to read or be social, i watched a buttload of vids on youtube, and dvds in general. Stircrazy, & the only venture out into the world being when forced by hunger for food, i had no outlets, really, no tv, just a sometimes working wifi & a shut off phone. 6 mo. into illness one day at the groc store, unable to bike home due to overexertion shopping (you know the drill), i sat resting & saw rock piles in pkg lot. Picked a few pretty ones up. After that, each visit over there i'd sift thru for more rocks. Take em home, clean em, then figure out jewelry designs for them. Then lose the design, or the rock, etc. lol
That grew to a full blown obsession. Got so ppl had to move rock boxes to sit down. I mention this for 1 reason: the collecting, cleaning, identifying, storing got my mind OFF my problems for very short periods of time. Soundbites of learning something new, & since my mind was shot it gave me a minor physical thing to engage in that was not taxing (sitting in a pkg lot clawing thru rubble is a no brainer). Many times i'd find a spot somewhere in town, then go late at night and sit till the sun started rising. I know it sounds cracked, but it had a role in healing. Also, the beauty in the rocks fed me, & i began collecting valuable rocks online.
Sleep: when i wanted however long i wanted. Too bad if the rest of the world rose when i was turning in. I used to feel guilty about that for some weird reason, but loved the silence. Now my cycle has reversed ON ITS OWN and i'm fine with the new conventional sleep pattern.
Got a tooth pulled that may have affected my bloodstream, who knows. Anyway, whatever has turned it, it's prob not even on this page. Too many variables. I think my CFS is viral in part & also think pro/prebiotics have gone a long way in my healing. There may be things i STOPPED like senna, flax, etc i'm not even aware of. Last, of course when 23andme came back, did whatever test indicated, like methyl pathways.
Feel free to pm me if you need more info. Good luck
"Just answer here."
Exactly as I said above. An extremely short request that sounds curt. I get my children's or husband's attention with pointing or physically turning them towards the way I want something done and may say only one or two words because that's all I can manage. To an onlooker it would sound really rude but my family understands it is not. When I am more capable I use full sentences and say please and thank you.
It is up to you what you post or don't, but I think it is critical to understand the limitations of other sufferers and not be so hasty to judge like those with no understanding of what we go through
Yes, that would be unusual if ppl posted just to hear themselves talk. From the responses it looks like ppl are able to read some longer paragraphs and that's fine. We do comm. via the written word here, and sometimes responses are long. I created the topic and will write how i am comfortable communicating. Others will read how they do.
What ppl can do, however, is choose a few routes to help themselves. One is cut & paste into a doc, then break up into whatever sizes they can read. Another route is simply a search for a key word on a page, which will bring up info. they want.
Lol, were I to do the every few lines para break, someone else wd complain; it's too spread out, the paras don't cohere, etc.
As the 12 step saying goes, take what you can and leave the rest.
As well it's critical to understand the differences between online communication and in-person comm.
Ever done genetic testing? Might give you clues... The detox-related body pain may be due to not detoxing long enough or with the right stuff for your body. ...best wishes to you
No is in my list of things to do. Will order the 23ME soon.
That is definitely true, but I don't believe the onus of responsibility is on the one with the huge cognitive issues - especially when they have made it very clear that is the case.
So, do everything under the sun. Got it!
Onus of responsibility, wow. Definitely not my problem. Over and out.
You can also try a Google Site Search
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