The Lost Years

[dangermouse]

Around 10 years. I've had some improvements in the earlier years after lots of rest. Not had anything like that since. After having pneumonia and development of Microvascular Angina I've been mostly housebound and have had recent deterioration.

I am disappointed in the current (and past) situation regarding treatment (or lack of) and also at the attitude of some medical professionals who don't understand this illness. I've had Rheumatologists insist that ME is a set of symptoms and not an actual illness.

 

[CFS_for_19_years]

Christ!!! how have you guys kept your sanity and not ended up mentally ill??? I'm 23 and hope this would never last longer than a few years.

Being a member of this forum has helped me keep my sanity, knowing there are others out there just like me. In spite of this disease, a lot of us have maintained a sense of humor, mainly as a defense against how most of the rest of the world treats us.

 

[WoolPippi]

8 years lost but in recovery now. Scared shitless.

 

[jjxx]

CFS triggered by hormone changes at puberty. Talking about lost years? Mine is decades! But have made miraculous recovery in mere 6-8 weeks ever since I STOPED seeing all doctors and STARTED selfhacking since last Thanksgiving.

 

[Lissyleigh]

20 years this October but I had a 5 year remission between 2000 and 2005 although the m.e was never totally gone. In the last two years I have stabilised and been able to do more.

 

[Kharren]

4 years a few in remission, now dancing between bed bound and couch bound. Since Oct. 2016 ONLY four months ago got hit with a major relapse exacerbation.

 

[Kharren]

CFS triggered by hormone changes at puberty. Talking about lost years? Mine is decades! But have made miraculous recovery in mere 6-8 weeks ever since I STOPED seeing all doctors and STARTED selfhacking since last Thanksgiving.

What is "self Hacking"?

 

[Kharren]

4 years and 4 months...but 2 remissions, once for about 7 months, then sick for 2 months, then good for 11 months...now coming up to 2 years sick.

The 2 remissions give me hope. Which diminishes each day.

Those periods of remission or for me even periods of energy levels where I can go outside and walk are glorious beyond my imagination.

 

[Lissyleigh]

Those periods of remission or for me even periods of energy levels where I can go outside and walk are glorious beyond my imagination.

Mine too. I'm so unbelievably grateful for those times as rare as they are. And during my remission I knew how wonderful it was to be able to walk a fair distance- I never took that ability for granted- and for that I'm thankful because sadly my m.e returned far worse after 5 years and my mobility has been limited to 200 yards on a very good day for the last 12 years. It is comforting that I never took my healthier years for granted.

 

[jjxx]

What is "self Hacking"?

Self diagnosing, self testing, self theorizing and self treating ( I am not willing to use the word self medicating though) with nutritional enhancement or therapy whatever you feel comfortable to call, based on intensive research.

 

[Kharren]

Self diagnosing, self testing, self theorizing and self treating ( I am not willing to use the word self medicating though) with nutritional enhancement or therapy whatever you feel comfortable to call, based on intensive research.

Thank you

 

[otherworldly]

22 yrs. half my life. after initial onset @ 60% functioning, took 10 yrs 2 reach 80%, mind u i had no idea what i was dealing w/@ that time & used mostly nutritional therapies. i was able 2 work full time & have a fairly normal life w/next 2 no social life, but i'm an introvert & i love my solitude so that didn't matter 2 me. then severe, crippling anxiety & depression out of no where . literally 4 no reason @ all & then more deep fatigue set in.

i eventually went down hill 7 yrs ago while in grad school & collapsed in2 severe & its been progressive. i am now very severe, bedridden, completely reliant on my 70 y.o dad 4 everything. my body is damaged in every way. i can't speak, barely able 2 type, ( this took me 3 days 2 draft) & of course thats just the beginning.

i haven't a lick of depression in the past 7 yrs, surprisingly, but 4 practical & quality of life reasons, i pray 4 a heart fatal heart attack every day. i had 2 go 2 the ER a few months ago & i only did so b/c i was hoping they'd find cancer & i'd have my exit point. nothing puts a smile on my face more than leaving this shell of a body behind & being free @ last. i came, i conquered, but i'd really like 2 go now, plz.

i keep a knife, gun, plastic bag & a noose w/in arms reach. just 2 chicken shit 2 go thru w/it after many failed attempts. i believe u truly need 2 b depressed 2 die by ur own hand, but it makes me feel better just knowing i have the option & it will always b an option. hoping the universe will just intervene 4 me sometime real soon & suck me in2 the here after w/all its light & love.....xx

 

[MeSci]

22 yrs. half my life. after initial onset @ 60% functioning, took 10 yrs 2 reach 80%, mind u i had no idea what i was dealing w/@ that time & used mostly nutritional therapies. i was able 2 work full time & have a fairly normal life w/next 2 no social life, but i'm an introvert & i love my solitude so that didn't matter 2 me. then severe, crippling anxiety & depression out of no where . literally 4 no reason @ all & then more deep fatigue set in.

i eventually went down hill 7 yrs ago while in grad school & collapsed in2 severe & its been progressive. i am now very severe, bedridden, completely reliant on my 70 y.o dad 4 everything. my body is damaged in every way. i can't speak, barely able 2 type, ( this took me 3 days 2 draft) & of course thats just the beginning.

i haven't a lick of depression in the past 7 yrs, surprisingly, but 4 practical & quality of life reasons, i pray 4 a heart fatal heart attack every day. i had 2 go 2 the ER a few months ago & i only did so b/c i was hoping they'd find cancer & i'd have my exit point. nothing puts a smile on my face more than leaving this shell of a body behind & being free @ last. i came, i conquered, but i'd really like 2 go now, plz.

i keep a knife, gun, plastic bag & a noose w/in arms reach. just 2 chicken shit 2 go thru w/it after many failed attempts. i believe u truly need 2 b depressed 2 die by ur own hand, but it makes me feel better just knowing i have the option & it will always b an option. hoping the universe will just intervene 4 me sometime real soon & suck me in2 the here after w/all its light & love.....xx

I don't know what to say, but feel I must say something. I hope that you find a solution to your illness other than the one you focus on. No need to reply - just know that I care and am thinking of you.

 

[Jan]

22 yrs. half my life. after initial onset @ 60% functioning, took 10 yrs 2 reach 80%, mind u i had no idea what i was dealing w/@ that time & used mostly nutritional therapies. i was able 2 work full time & have a fairly normal life w/next 2 no social life, but i'm an introvert & i love my solitude so that didn't matter 2 me. then severe, crippling anxiety & depression out of no where . literally 4 no reason @ all & then more deep fatigue set in.

i eventually went down hill 7 yrs ago while in grad school & collapsed in2 severe & its been progressive. i am now very severe, bedridden, completely reliant on my 70 y.o dad 4 everything. my body is damaged in every way. i can't speak, barely able 2 type, ( this took me 3 days 2 draft) & of course thats just the beginning.

i haven't a lick of depression in the past 7 yrs, surprisingly, but 4 practical & quality of life reasons, i pray 4 a heart fatal heart attack every day. i had 2 go 2 the ER a few months ago & i only did so b/c i was hoping they'd find cancer & i'd have my exit point. nothing puts a smile on my face more than leaving this shell of a body behind & being free @ last. i came, i conquered, but i'd really like 2 go now, plz.

i keep a knife, gun, plastic bag & a noose w/in arms reach. just 2 chicken shit 2 go thru w/it after many failed attempts. i believe u truly need 2 b depressed 2 die by ur own hand, but it makes me feel better just knowing i have the option & it will always b an option. hoping the universe will just intervene 4 me sometime real soon & suck me in2 the here after w/all its light & love.....xx

I'm so sorry to hear how severely you are affected and completely understand the way you are feeling as I've felt it myself in the past. Many nights I would go to sleep praying I would not wake up the next morning.

But, please, hang on in there, the research into this hideous disease is really moving fast and exciting discoveries are being made and drugs are being tested. Many of us can at last feel hope of treatments in the near future. Wishing you some peace and relief from your suffering

 

[jjxx]

22 yrs. half my life. after initial onset @ 60% functioning, took 10 yrs 2 reach 80%, mind u i had no idea what i was dealing w/@ that time & used mostly nutritional therapies. i was able 2 work full time & have a fairly normal life w/next 2 no social life, but i'm an introvert & i love my solitude so that didn't matter 2 me. then severe, crippling anxiety & depression out of no where . literally 4 no reason @ all & then more deep fatigue set in.

i eventually went down hill 7 yrs ago while in grad school & collapsed in2 severe & its been progressive. i am now very severe, bedridden, completely reliant on my 70 y.o dad 4 everything. my body is damaged in every way. i can't speak, barely able 2 type, ( this took me 3 days 2 draft) & of course thats just the beginning.

i haven't a lick of depression in the past 7 yrs, surprisingly, but 4 practical & quality of life reasons, i pray 4 a heart fatal heart attack every day. i had 2 go 2 the ER a few months ago & i only did so b/c i was hoping they'd find cancer & i'd have my exit point. nothing puts a smile on my face more than leaving this shell of a body behind & being free @ last. i came, i conquered, but i'd really like 2 go now, plz.

i keep a knife, gun, plastic bag & a noose w/in arms reach. just 2 chicken shit 2 go thru w/it after many failed attempts. i believe u truly need 2 b depressed 2 die by ur own hand, but it makes me feel better just knowing i have the option & it will always b an option. hoping the universe will just intervene 4 me sometime real soon & suck me in2 the here after w/all its light & love.....xx

Life is not easy, especially for us who are not in good health; Many of us lost not only years but also dignity to the illness. You have fought so far, you approved you are a good soldier.
I never had youth since I fell immediately ill at the age of 12, now I have two elderly and ill parents I have to take care of. Please get some professional help with your thoughts. Last year I was experimenting with vitex, a herb for my hormone imbalance, and I ended with one day real depression ever in my life. That's the first time I realized what an awful feeling depression is!
You are a good soldier, I know it.

 

[Artorias]

My heart goes out to you all.

10 years for me now. My small one bedroom flat is my entire world. Can't really complain; it's a nice enough place to exist in. My mother always says she's amazed I haven't gone stir crazy, but as time goes on I'm finding it a struggle to keep my head together. It's hard not to mourn for what could have been. I think my saving grace has been my rather dark and warped sense of humour

 

[maybe some day]

26 yrs for me, thought I could lick it in 5. Crap was I wrong. Periods of remission and relapses. 2011 thru 2015 did quite well for no reason. 2016 not as good, 2017 is starting off barbaric. Trying to keep my mind focused but honestly I'm afraid to go to bed at night. Afraid of what I will feel like in the am. Afraid of another 26.

 

[KristenSF]

26 yrs for me, thought I could lick it in 5. Crap was I wrong. Periods of remission and relapses. 2011 thru 2015 did quite well for no reason. 2016 not as good, 2017 is starting off barbaric. Trying to keep my mind focused but honestly I'm afraid to go to bed at night. Afraid of what I will feel like in the am. Afraid of another 26.

I haven't been sick nearly as long as you have, but what you say resonates with me so much. What I wake up to every day is an utter crapshoot. I've stopped wishing I'd wake up feeling better because I've been sick about three years and it just isn't happening. I get worse, not better.

But I bargain with the Fates every night hoping I will at least not feel a lot worse in the morning and I'll be begrudgingly grateful if I feel the same level of awful tomorrow that I do today. I'll also accept feeling a little worse, because I'm used to it.

I feel endlessly grateful (not to mention ineffably sad) that I can come here and find people who understand this.

 

[Dmitri]

Turning 23 next week and it has been lifelong.

The thought of surviving to old or middle age terrifies me so much, the additional problems of aging combining with my progressive deterioration, and I am already crushed under the weight of all the symptoms.