Is it possible to get your life back? Has anyone here done it?

[16bit]

I echo that, @TiredBill ! That has been exactly that for me. I'm a little more extroverted too, but I learnt to find joy in the introverted life. I am a big film watcher. I socially watch films, but I have learnt to enjoy it by myself too. Things like that. For the times when I can't socialise!

I certainly have a fear of relapsing, losing my job... all of that. I had to stop seeing people during working on my sleep because I couldn't do it given how badly it affected me. It was very upsetting, given that I wanted to be social.

This whole journey has been a wild one.

However, the sleep goal was for the better. I am proud of myself for it. I have had sleep issues since I were a toddler. So it's a big achievement for me. I definitely feel like CFS has motivated me to become the best person I can be, and helped me realise how resilient I am. I think we all ought to give ourselves credit for getting through our days!

 

[JaimeS]

@JaimeS what an incredible story! Are you able to have a social life as well now?

*nodnod*

Gentle social activities like going out for coffee or playing board games are almost always okay. I have to gear up with lots of CoQ10 for anything that's more active and have to be in the right health even before then, but I have gone to Yosemite and even...

...le gasp!

...gone dancing.

I can still crash, which I have done from last week's marathon lab session. The key for me is breaks that allow my HR to return to normal before continuing the activity; you have to be careful with yourself and ensure you really do that, no matter how long it takes. (Dancing was: dance for one song, sit out four.) Note: even with the above activities, a lot of OTC meds are upped!

...officially the coolest I will ever be.

I'm not recovered. I will always be sick, so far as I know. I'm living at about 3/4 normal power, and determined to experience life to the best of my ability within my means. And I will keep researching and fighting for the people who are at fifty percent, or twenty percent, or ten.

 

[silky]

@JaimeS amazing photo!! thank you so much for sharing!

I read some of your posts and it seems like you're working with Ron Davis (which is totally cool btw!). Don't you think there's a good chance you guys will find something to get you over 3/4?

 

[WoolPippi]

I'd really like to hear some modest recovery stories if they're out there.

It seems so impossible to me right now.

Thanks!!

Hi
I did it, I am recovered. Was deathly ill in 2009-2011. Was alive 2012-2015. Am recovered now but it's an ongoing process (and scary).

The old life I'll never get back. Because I had to throw everything and the sink at this disease. Yes I played all angles: food, pacing, social recluse, mental attitude, exercise (DON'T!), hormones, adrenals, sleep, supplements, methylation, rest, etc.

Got a totally different life now and continue to pay attention to all the angles. But I have a life again and can do things and have room in my head for other things than this disease. I am looking to go back to work soon (freelance, at home).

I had to do everything myself. No doctor can survey the individual parameters that make up your version of this disease.
Also: doctors are specialized in one thing going majorly wrong ("oops, your thyroid has fallen out. Here's a replacement."). They are not trained for the subtle interactions that define this disease.

my tip is to see this illness as a webbed phenomenon. Tug a little here, tug a little there. Eventually you'll play it like a harp and that's when you get better. Major subjects are food (don't tire your body with hard to digest food); nervous system (find a personal way to calm it the fuck down.); homeostasis (reduce impulses, fortify blood pressure, minerals, lymph system) and cell health (no heavy metals, yes minerals, methylation, lymph system to carry away waste). And adrenals because stress of any type kills.

The mental coping is very tricky. This illness messes with your head and you'll feel things that are not you. Depression. Gloom. Desperation. Anxiety. It's all bad chemicals, never bad character. I found this very hard. Very hard to believe and very hard to cope with. Only stubbornness has pulled me through. And seeing how I mentally felt better after taking vit D (for example).

Now I know that whenever I'm thinking about life and feel like I understand it all I am asking the wrong questions. Which is very hard to believe because at times I see things so very clear. The thing is that life cannot be measured with the mind. The mind is simply not the right tool.

 

[WoolPippi]

They are stories. Where are the damn treatments?

you've got to find your own, because you require tailor made treatments, you special unicorn you. Start researching your individual version of this disease.

Inester7 gives The Starting Points For Getting To Know Your Illness in post 17 on this page:
1. your immune system
2. your orthostatic intolerance
3. your friendly foods

 

[JaimeS]

Don't you think there's a good chance you guys will find something to get you over 3/4?

We shall see, we shall see.

No doctor can survey the individual parameters that make up your version of this disease.
Also: doctors are specialized in one thing going majorly wrong ("oops, your thyroid has fallen out. Here's a replacement."). They are not trained for the subtle interactions that define this disease.

Truer words were never spoken. You have to be your own doctor. You cannot depend on others to save you, the way it's safe to do in other illnesses: just put yourself in the doctor's hands. Maybe someday that will be a safe choice, but not today. I wrote a note to another patient like this. I'm working today and only taking quick breaks to post, but it would be nice to turn that letter into a blog post (with information about the individual in question removed.)

life cannot be measured with the mind. The mind is simply not the right tool.

I've been impressed with your writing before, @WoolPippi but this post is one of the most fascinating things you've ever written. You should develop a Zen Guide to ME/CFS. I'd buy it.

you've got to find your own, because you require tailor made treatments, you special unicorn you. Start researching your individual version of this disease.

Hear, hear!

 

[Gingergrrl]

...officially the coolest I will ever be.

Amazing photo @JaimeS and your story remains very inspiring to me.

 

[JaimeS]

Thank you, @Gingergrrl . I have always found inspiration here on Phoenix Rising. I think if we could harness the collective intellectual power and the fighting spirit of the people here, we could solve this disease together in no time. I'm only half-joking!

 

[BFitz89]

*nodnod*

You hiked Half Dome while sick? That's amazing. I did that at 15 at peak fitness and it was a rough one.

 

[JaimeS]

You hiked Half Dome while sick? That's amazing. I did that at 15 at peak fitness and it was a rough one.

We didn't hike much -- we drove from location to location, got out, climbed around on some rocks, climbed in/around a river, walked through fields. It was good for someone sick -- 15 - 30 minutes of gentle activity and back to the car.

Norway said, "I don't want to make ableist assumptions, but I think this will be okay. I think you will be able to enjoy it."

It was true.

Climbing up onto that rock that juts out over everything was no joke, though, physically. But it required a short burst of activity, and then I sat there peacefully for several minutes after, chilling back out.

 

[silky]

@JaimeS thats so great. Do you track your steps and know how much they've improved by?

 

[Gingergrrl]

Thank you, @Gingergrrl . I have always found inspiration here on Phoenix Rising.

Thank you, and I have as well.

We didn't hike much -- we drove from location to location, got out, climbed around on some rocks, climbed in/around a river, walked through fields. It was good for someone sick -- 15 - 30 minutes of gentle activity and back to the car.

To me it is very impressive and if I can do even half of this in the future, it exceeds my wildest expectations of recovery.

 

[notmyself]

Since you are relatively new to CFS, heres a few things I would travel back in time to tell myself.
CFS seems linked directly to adrenaline surges causing crashes. Egg or chicken, I dont know.
Body always tired in morning after cortisol spike, things like that. CFS very close to Gulf War Sickness, Yuppie Flu,
seems to be more prevalent in high adrenaline people, ultra athletes, adrenaline junkie etc. Spikes in teenage years and 30-40 group does suggest a stress related timeline, but nothing ever conclusive.

So, look after after your adrenals, don't do adrenaline surges and maintain a "I don't give a shit attitude", don't stress about what others think about you, f@@k em. Concern yourself about your wellbeing. Actually, you almost have to be selfish in that regard. It goes against my and probably most of us personality, as we are givers. Need to switch to taker.

Keep diet clean, the makers diet with seafood works best for me, but we all differ. Essentially nothing processed.
I found D, B vits and Aminos acids worked best, but male and female not similar in amino profiling.

Treatments are coming sooner than ever, keep faith.
It can be a dark road, but remember there are always people worse off. Keep things in perspective.

isn't what you describe adrenal fatigue syndrome?..or a hormonal imbalance that lead to the so called burnout?

 

[kelly8]

Inester7 gives The Starting Points For Getting To Know Your Illness in post 17 on this page:
1. your immune system
2. your orthostatic intolerance
3. your friendly foods

@WoolPippi , I'm still new to this site and am having trouble finding this. I tried looking up inester7 and couldn't find them and then I tried getting to know your illness. This sounds like something I'd like to read. Could you advise how to find it or link it? Thank you!

 

[Wonko]

@WoolPippi , I'm still new to this site and am having trouble finding this. I tried looking up inester7 and couldn't find them and then I tried getting to know your illness. This sounds like something I'd like to read. Could you advise how to find it or link it? Thank you!

http://forums.phoenixrising.me/inde...ck-has-anyone-here-done-it.52968/#post-878143
seems to be what is referred to

 

[JaimeS]

@JaimeS thats so great. Do you track your steps and know how much they've improved by?

I did 10,000 steps Tuesday and crashed, but they were sequential: little to no rest. Took about a week to recover properly.

I did 8,500 steps in Yosemite and had two days of rest afterwards, no distinct crash but had to be very careful in the days following. Looked at another way, very tiny crash with little long-term consequence.

When I was moderate-edging-to-minor walking half this distance would crash me but good.

When I was moderate, I didn't even bother monitoring my steps. Useless. Just tried as best I could to move about when I felt okay and do a starfish impression when not.

Interestingly, the BPS advice finally applies to me. It's best to keep moving, or I get lactic acid buildup and my fatigue and muscle-burning gets worse, not better. I find this very weird, but it's objectively the case. First thing in the morning is the worst: every muscle burns. I still have terrible circulation -- low blood volume, still? -- and often wake up with one of my arms completely numb. So perhaps now that gentle movement doesn't crash me, moving being a better deal shouldn't be a surprise.

isn't what you describe adrenal fatigue syndrome?..or a hormonal imbalance that lead to the so called burnout?

It's weird how similarly our bodies react to panoply of stressors. The difference appears to be that there is something that 'sticks' you in this state if it's infectious, whereas you can recover from burnout / adrenal fatigue. IMO, there is not much difference between burnout and the early stages of ME/CFS, so far as symptoms are concerned. It's that ME/CFS goes beyond, both in symptom-course (the symptoms change noticeably, at least so far as I've seen, in early vs late) and in time-course (ME/CFS goes on more-or-less forever, burnout should theoretically be healed by aggressive resting and some adrenal supplements).

Therefore, I think advice that applies to burnout might apply to ME/CFS patients at onset.

 

[JaimeS]

I felt horrible on echinacea tea, zinc, and high of anything that was supposed to be "healthy that would increase the inmune system. Felt great on acai tea (inmune modulator)

Ditto, @Inester7. Too much Vitamin C / immune boosters: bad. I take Lactoferrin, but only at night, because otherwise it's too much inflammation to deal with.

Stuff that directly kills bugs, like colloidal silver? Very good.

 

[Strawberry]

do a starfish impression

Oh my word, this is my new favorite!

 

[Alvin2]

do a starfish impression when not

Very funny, i also have trouble walking normally sometimes, i'm going to start calling it this now

 

[ljimbo423]

Very funny, i also have trouble walking normally sometimes, i'm going to start calling it this now

We can start a new dance craze and call it "the starfish"!