A quick back story- I just turned 29 and before getting slammed with ME I have spent 2.5 years with severe adrenal fatigue and then a year of severe benzodiazepine withdrawal (I only took Ativan for 2 weeks to counter thyroid medication and it spun me into hellish withdrawal). I loved my life before that stuff happened- absolutely loved it. After being completely bedbound for 2 years with adrenal fatigue I was finally getting better and got slammed into the ground by Ativan withdrawal and then went through another year of absolute hell. I don't know how I made through that but after a year I was finally getting better and getting back on track with my adrenal fatigue recovery. I thought that I probably had 2-3 more years of sickness to go until I could rebound to any degree of a "normal" life. I didn't know how I was going to last that long but I knew there was a light at the end of the tunnel.
Then, this March as I was finally mounting my recovery again I took 1 pill of phosphatidylserine and a couple hours later woke up with M.E. Hit me like a tidal wave
I was dumbfounded. How could I get hit with something ELSE new?? Could this really be happening?!
Since that point because of severe PEM I have gone downhill immeasurably. I am so dissociated I can't even feel time or existence anymore. I feel nothing. Reality is merely a concept to me now because of how far away it is. The emptiness in my brain is gut wrenching and there are multiple levels of complexity in this world that my brain simply can't perceive. The world appears as if I have been poisoned- like in a movie when they show someone in first person who has been poisoned. It's so bad I had a SPECT scan done and the doctor even said I was the worst he's ever seen, that my 29 year old brain is worse than a 90 year olds and I'm showing signs of dementia.
These things never get better, never fluctuate, just get worse. It doesn't matter how much I sleep, rest, eat etc.. It just declines. My description doesn't do my symptoms justice- it's 1,000x worse than that
At least before I had ME, as sick as I was I knew that if I did everything right I would get my life back again someday. It would be years but it would come. I would be able to do the small things I enjoyed again- be outdoors, camp, go on dates, be social, work out (I'm a personal trainer who just released my first fitness video), have a career, aspire for things, own my own house, rebuild a car, start a family, throw parties etc.. just LIVE! all those tiny and large things that make life so great. Even the negative things, I want them, their a part of making life great too.
However I feel like ill never be able to grasp that stuff again. I've read the stats on this disease and I know it's almost impossible to fully recover, and even less likely for the people who are as bad as I am. I'll be honest- I'm not interested in going the rest of my life recovering 20-25%. I'll take it, sure, but that would still make me really sick. I'll be honest, I want 95% and nothing less. However I know the odds of that happening are slim to none. Some days I have the realization of how far down I've actually gone and realize "oh my God, my brain is baaaaaad. Really, really bad. How am I supposed to recover from this"?
I don't know how some of you long timers have done it, I truely don't. Every day I watch my friends live their lives- get promotions, have kids, get married, travel, simply have a beer after a long days work. Meanwhile I'm living with my parents trying not to slip into psychosis. How am I supposed to prepare to spend the rest of my life very, very ill, possibly never feeling reality again? I just can't see the light at the end of the tunnel anymore
I apologize for the rant and the length of this but I think Im at a crossroads here with the realization of what I have. I've been sick for long enough already and then got struck down by ME, how am I supposed to accept this fate?
Then, this March as I was finally mounting my recovery again I took 1 pill of phosphatidylserine and a couple hours later woke up with M.E. Hit me like a tidal wave
I was dumbfounded. How could I get hit with something ELSE new?? Could this really be happening?!
Since that point because of severe PEM I have gone downhill immeasurably. I am so dissociated I can't even feel time or existence anymore. I feel nothing. Reality is merely a concept to me now because of how far away it is. The emptiness in my brain is gut wrenching and there are multiple levels of complexity in this world that my brain simply can't perceive. The world appears as if I have been poisoned- like in a movie when they show someone in first person who has been poisoned. It's so bad I had a SPECT scan done and the doctor even said I was the worst he's ever seen, that my 29 year old brain is worse than a 90 year olds and I'm showing signs of dementia.
These things never get better, never fluctuate, just get worse. It doesn't matter how much I sleep, rest, eat etc.. It just declines. My description doesn't do my symptoms justice- it's 1,000x worse than that
At least before I had ME, as sick as I was I knew that if I did everything right I would get my life back again someday. It would be years but it would come. I would be able to do the small things I enjoyed again- be outdoors, camp, go on dates, be social, work out (I'm a personal trainer who just released my first fitness video), have a career, aspire for things, own my own house, rebuild a car, start a family, throw parties etc.. just LIVE! all those tiny and large things that make life so great. Even the negative things, I want them, their a part of making life great too.
However I feel like ill never be able to grasp that stuff again. I've read the stats on this disease and I know it's almost impossible to fully recover, and even less likely for the people who are as bad as I am. I'll be honest- I'm not interested in going the rest of my life recovering 20-25%. I'll take it, sure, but that would still make me really sick. I'll be honest, I want 95% and nothing less. However I know the odds of that happening are slim to none. Some days I have the realization of how far down I've actually gone and realize "oh my God, my brain is baaaaaad. Really, really bad. How am I supposed to recover from this"?
I don't know how some of you long timers have done it, I truely don't. Every day I watch my friends live their lives- get promotions, have kids, get married, travel, simply have a beer after a long days work. Meanwhile I'm living with my parents trying not to slip into psychosis. How am I supposed to prepare to spend the rest of my life very, very ill, possibly never feeling reality again? I just can't see the light at the end of the tunnel anymore
I apologize for the rant and the length of this but I think Im at a crossroads here with the realization of what I have. I've been sick for long enough already and then got struck down by ME, how am I supposed to accept this fate?