Pepcid and 1 month without an 'episode'
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Up and about, so it was pem not an episode. I will be careful not to overdo it today. Also I've doubled the dose of Itraconozole. By the way, I picked up athletes foot 25 years ago at a public pool and tried everything to get rid of it, now my toes have gone back to normal, Itraconozole has healed that
linusbert
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so how is it going today?
@linusbert
thanks for asking, i didnt want to flood the post
a bit complex background, if its too much reading, skip ahead to the ***
my family used to go to a summer retreat, i know I'm super fortunate
because of work and such I haven't been in a long time
then I got cfs and for many years my fam didn't take it seriously, I ascribe this to me being tucked away at my girlfriends house that they didn't get along with, or perhaps they thought I was exaggerating, though I will never know
after I broke up with that girlfriend, i had already lost the ability to work and all my savings had gone to her and her house so i had no choice but to move in to my parents house, where upon seeing me directly they started taking my condition seriously, then i got covid and it got even worse
then they decided to enroll me in a clinic that seemed promising, so promising on paper at least that they bought me a ticket to go to the summer retreat last year, but i didn't feel confident going
then the ticket was extended to this year but the therapies at the clinic weren't working and I didn't feel confident traveling and didn't go, the house is in a rural mountainous village and with episodes unpredictable i wouldn't be able to even walk from the parking area to the house, much less enjoy the retreat
*** Yesterday was day 4 of questioning 'is this pem or an episode?', Definitely an episode as I slept until 4pm, I had no choice, and when I got up I wanted to see my family return so I took an inordinate amount of Kratom Alvesco pym albuterol etc, though I was dizzy and almost stumbling the whole time. Their arrival was delayed and I had managed to clean up, shower and dress nicely. So yes it was an episode but qualitatively less severe as it had me questioning for 4 days whether it was an episode.
linusbert
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thanks for background.
but glad to hear that your family took it seriously eventually!
dont stress yourself with clinics, if they dont do excessive diagnostics and its just some change of air i wouldnt bother to much. do you feel the need for a change of air? if you are not stressed at where you are right now, i dont think its that important to get out and risk worsening.
so whats an episode and what pem?
and so , does your solution work or didnt it hold up to the promise?
but glad to hear that your family took it seriously eventually!
dont stress yourself with clinics, if they dont do excessive diagnostics and its just some change of air i wouldnt bother to much. do you feel the need for a change of air? if you are not stressed at where you are right now, i dont think its that important to get out and risk worsening.
so whats an episode and what pem?
and so , does your solution work or didnt it hold up to the promise?
It's very therapeutic to feel heard, you know how isolating cfs is, communication, even cyber is fulfilling, thank you.
Clinics are like new medicine regimes, it's like Lucy and the football, only much more expensive. To be fair I haven't done all the tests, every time I have needles put something in or take something out I get knocked out for 3 days., so have been kind of avoiding it. That and lining up when I feel alright to when the clinic is open is like Tron vs the CPU.
Of course I long to get out, which leads to your next question. An episode is when I feel like I've got a flu in every way except coughing fever and mucous, I sleep between two days to three weeks day and night waking only to use the restroom and am dizzy when walk. Pem is post exertional malaisse where I feel low tired depressed and unable to focus, though I don't have the flu type symptoms.
'does your solution work or didnt it hold up to the promise?' a bit of both, I would say it has improved the situation between 5 to 10%, let's say 8%. That doesn't hold up to what I originally thought. Is it worth it, yes, just not as exciting as I originally had hoped,
Thanks
linusbert
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yea i used to run movies besides or TV and have music on, to squelch the feeling of loneliness.
i did a "sabbath"-like week recently, no media at all, no music, no radio, no social media, no internet, no nothing, just me in the world around me... and the bible. mid week i almost went crazy and had what felt like a depression. after 7 weeks though, i felt calm, no feelings, no good feelings no bad feelings, i just was there. no need to watch movies, hear music or anything. and the things i really wanted to do, i was focused sharp and motivated. equilibrium.
since then i do not watch tv / movies , and i do not listen to music anymore. feel no need.
thats probably what people mean with "digital detox".
we are not consumers, we are consumed. we need to get our souls back which have been taken from us.
thats what i had before i got sick, for years. i think its classical exhaustion there is something like a exhaustion like flu, what might help is eating more frequently like every few hours and more carbs then.
i know that feeling. or i have it similiar.
what helps me is eating on that day and the days liver saussage. i guess its the organ meats and maybe the iron and purines. so when the doctor does this thing with the needle, i eat liver saussage right in the morning and meats over the day. seamed to help a lot.