I can't picture spending the rest of my life like this

[Aerose91]

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?

 

[SOC]

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 can tell you how I do it, more or less. I'm fighting. I've never been a quitter. ME/CFS is not the only challenge I've faced in my life, but it is the biggest one. I refuse to curl up and die -- to let this thing beat me. I keep fighting for all the little improvements I can get. And every little improvement is a victory over this damned illness.

I survive by seeing myself as a warrior. I'm strong. I'm brave. I'm fighting. I may not win the war against ME/CFS with my attitude, but I'm sure as heck not going to win if I don't fight. By fighting, I've made enough progress to improve my quality of life, so my life is better now than it would have been if I had just given up. That, at least, is a big battle won. And every battle won is a step towards winning the war.

 

[Aerose91]

I really commend your attitude, SOC, I really do. Your fight is inspirational. And im a fighter as well, I even was a competitive boxer. But like you said this is a war- and winning the war is all I care about, not being content with some battles won and some lost if I must be honest. I got sick at 26 and got hit with ME at 28. I never got a chance to live my life, to spread my wings and do all the things I hope and dream about. I never could have pictured my life going from "I plan on taking over world and loving every minute of it" to " I hope I feel reality again before I die". It's just not a concept that I can swallow.

 

[helen1]

If I let myself, I'd be in despair a lot but I tell myself that despair is physically damaging so I don't allow myself to go there. Most of the time.
Instead, I analyze my situation in a clinical and mostly scientific way with a good dose of Buddhism thrown in. This way I decide on my next strategy toward recovery. I feel like I'm taking charge and doing something useful to help myself. Which I am.
This approach came from being inspired by some of the people on this forum, like Rich, freddd, Skyline, Slayadragon, Gestalt, greenshots, Catseye, Caledonia and others, who seem to use this approach to good effect. I don't know if I'll recover as well as some of them have, but it keeps me out of the dark pit of you know what.

 

[Sushi]

@Aerose91

Also consider that the pattern of the last few years may well be related. Many or most of us have or have had adrenal issues.

And, my guess is that you will get better. You are taking good steps now, you are young, more is being learned every year....

Patience with this disease isn't easy, but with the stance of a fighter, there is always some thing in this disease to "go after," so it need not be a passive patience.

Best wishes,
Sushi

 

[Aerose91]

@Aerose91

Also consider that the pattern of the last few years may well be related. Many or most of us have or have had adrenal issues.

I have no doubt that my adrenal fatigue was a welcome mat for this- then add in a lifetimes worth of stress compiled into one year from the benzo withdrawal on an already weak body and there we go.

Thank you for the kind words, and I will fight because I have to and I hope to God that I, and all of you as well can feel health again someday.

I hear so many conflicting stats about this disease tho- I would love to hear what the percentage is of people who were very ill, like is, that to on to mount a full or near full recovery. I wonder if all of full recoveries are people who were only afflicted mildly and started to get better from the get go.

 

[SOC]

I really commend your attitude, SOC, I really do. Your fight is inspirational. And im a fighter as well, I even was a competitive boxer. But like you said this is a war- and winning the war is all I care about, not being content with some battles won and some lost if I must be honest. I got sick at 26 and got hit with ME at 28. I never got a chance to live my life, to spread my wings and do all the things I hope and dream about. I never could have pictured my life going from "I plan on taking over world and loving every minute of it" to " I hope I feel reality again before I die". It's just not a concept that I can swallow.

Well, you're not going to win if you don't fight. You know from boxing that you don't win every battle and you don't know going into every battle whether you're going to win or lose. All you can do is do the very best you can -- fight as hard as you can.

Your only other choice is to give up because you don't know if you're going to win or not, but then you certainly won't win. Yeah, it sucks to have no guarantees. It sucks to lose a part of your life. But giving up, curling into a ball and feeling sorry for yourself is not going to make anything better. Not for me, anyway.

I often think of the people who were young adults during WWII or the Depression. They didn't get to have happy, easy young lives, either. They didn't know what their future was going to be. Like us, all they could do was fight for their futures without a guarantee of success. Like us, they wanted more from their lives than they got to have -- but they kept going.

I also keep in mind that what is true today about ME/CFS treatment is not what is going to be true 5 years from now, or 10 years from now. Things could be very much better for us in the future than they are now. I don't want to let my condition get worse and worse until I can't benefit from those developments. I want to get the most out of my life now and set myself up to be in the best possible position to take advantage of future developments.

And yes, I'm a glass half-full person.

 

[Sparrow]

I will tell you that in my experience it does get easier. If you did manage to have that 25% improvement, things would still stink, but not nearly so badly. It is very, very difficult to keep hope alive when you're at your lowest, especially when you don't know how long you'll have to endure that. I've found that now that I'm climbing upward, things are SO much easier to handle. Still hard, and still painful, but in the day-to-day I do okay. I've gotten pretty good at comparing everything to where I was at my lowest, and compared to there I'm doing amazingly well.

And I haven't given up. I haven't yet been able to accept that I won't still get the chance to have some of the pieces of my life back. My expectations aren't as high now as they once were. Maybe I'll never be able to walk around for hours without a wheelchair, but I might still make it to Paris. Maybe I won't ever work again, but I might be able to see my friends, or accomplish some of my other life goals. And I think I could almost be okay with that. People adjust to all kinds of awful situations given enough time. It's the changes in situation that are brutal.

And maybe, just maybe, a breakthrough in research could come at any time. Who knows. There are still a lot of years ahead of me, and these things can progress quickly once they really get going. If this illness has taught me anything, it's that you never know what's around the corner, or how different your life will be in 5 or 10 years.

In regard to your question about recoveries, I'm not sure how many people who are really sick for an extended time go on to recover fully. I've wondered that myself. For what it's worth, I was quite ill when I first got sick, and I had a long period of quasi-remission, so there might be some hope. I wasn't nearly as torturously bad during that first bout as I was in the past years, but was mostly bed ridden with orthostatic intolerance problems and some very significant cognitive/neuro issues (transiently incapable of making sense of written words, etc.). I recovered a lot. For a short while in the following years I was almost healthy, then for a longer time was still healthy enough to lead a fairly normal life with some restrictions. I'm positive I would have been able to keep from crashing out so badly in the past years if I had known what was wrong with me then and hadn't kept pushing myself so hard all the time. Anyway, I hope you'll have the same chance, and with a diagnosis you'll know better how to take advantage of it without driving yourself under again like I did.

 

[Beyond]

Aerose I sympathize. I have been sick only three or four years (not sure, strange right?) and half of these I was feeling so much better than the term "chronic fatigue" was absolutely ridiculous to be associated with me. I didn´t even realize I was getting ill. I am 22 now. If I was 29 and had passed what you I don´t know what I would do. But I know this. You can recover mate! We all can with the proper diagnosis and treatment. The corrupt medical establishment is faulty of us not curing and suffering, directly. You are in these forums because you know you can recover, or in the worst case, improve. Not 25% but probably more, is up to you.

At least you had a young-adult life for some years, so you know how it is like outside of movies or books. I never actually enjoyed life, because I was just picking up to fly at that age. Prior to that I lived a life of introversion and morbid tendencies. Just when I started dating, socializing more and thinking of projects (used to be very creative) I started feeling like shit and losing interest, energy AND talent. Oddly this illness has awaken fully the sunken and forgottem scientist-me and the artist will never come back as the primary character - now that I know that physicality is everything in this realm I will become a healer and researcher when I cure.

You said adrenals for 2.5 years, and thats significant. This is how I see it. You never healed adrenal fatigue and actually is worse than ever. I suggest exploring that avenue. The drill is: gut, adrenals, thyroid and methylation. Add in chronic infections and other variables. Crazy that PS serine gave you ME!! Wtf. I know it lowers cortisol but that cannot be it.

http://forums.phoenixrising.me/inde...tisol-and-feeling-drastically-improved.12837/

 

[Aerose91]

I know that my adrenal fatigue opened up the door for this to happen and they are not healed yet. However what kind if sucks is that the protocol for healing adrenal fatigue is basically the same as ME- heal and boost the immune system. I've been doing everything needed to recover from ME for 2 years now and I still got it. Very disheartening. But I know I'm not jus in a bad adrenal crash, that feels waaaaay different than this. Adrenal fatigue need did even 1/10th of this to my brain. This is a whole new monster. Also, if you do everything right with adrenal fatigue you will stabilize and start to improve. Long road, yes, but you will get better. With ME I've been doing everything right from the beginning and I continue to decline. I just can't help but wonder what it will take and since I've declined so much from the beginning if there's even a chance of becoming mostly recovered.

It would be nice if I was at least progressing. It helps a lot to put all the effort in to heal yourself and see some result from it vs just staying stable or continuing downward. Yes I want to feel what 25% improvement feels like but I want to continue past that. Who doesn't? I just can't accept the fact yet that at 29 the life I worked so hard to begin building and longed for is gone.

 

[beaverfury]

I really commend your attitude, SOC, I really do. Your fight is inspirational. And im a fighter as well, I even was a competitive boxer. But like you said this is a war- and winning the war is all I care about, not being content with some battles won and some lost if I must be honest. I got sick at 26 and got hit with ME at 28. I never got a chance to live my life, to spread my wings and do all the things I hope and dream about. I never could have pictured my life going from "I plan on taking over world and loving every minute of it" to " I hope I feel reality again before I die". It's just not a concept that I can swallow.

I feel for you. At your age the irony is hard to bear. All that's standing between you and the world is this thin but impenetrable layer of illness.
I'm 43. If i got better overnight i'm still past the age of being a top competitive sportsman and world's greatest lover, so such things torment me less and less.

It's too cruel to ask someone your age to philosophise this illness into some meaning. I would prefer you got better and started kicking ass like you should be doing.

As to recovery or improvement-
I live in a town of about 5000 people. There are four people in my town who had me/cfs(-like illneses) who have recovered enough to go back to their careers. A primary teacher, an electrician, a farmer and a heavy duty mechanic.
I have talked to the primary teacher. She was totally bedbound for five years and now says she has recovered.(I think she has been recovered for about 5 years).
I pushed the meaning of 'recovery' with her and she insists she lives a normal life now.

The electrician was sick for 8 years and now works at his own business full time, has got married and had a child.
He says has to be a little cautious not to get too tired, but is otherwise normal. He recently ran a half marathon!

The heavy duty mechanic improved after having a sinus operation. He was/is ill for 5-6 years. He is now doing 80hr weeks. I'm not sure of his level of recovery. I hope to see him soon .

Seems like a good town to live in. But maybe it skews the perception of recovery? When i look on the world wide web i can only find about 60 recovery stories from me/cfs. Things look very bleak indeed.
I can only think that improvements are so slow and unimpressive that they are not worth crowing about and tend to go unreported. And then, how many want to talk about illness afterwards?

It was a long, and no doubt tortuous wait for all these people, but they illustrate at least some people get the externals of normal life back again. As for subjective levels of bodily wellbeing, i cannot tell.

It strikes me that Phoenixrising has accumulated 8000+ members, but only has 1000 active members.(?)
Where have the other 7000 gone? Have they improved enough to move on? had enough of the internet? deceased?

 

[Aerose91]

I feel for you. At your age the irony is hard to bear. All that's standing between you and the world is this thin but impenetrable layer of illness.
I'm 43. If i got better overnight i'm still past the age of being a top competitive sportsman and world's greatest lover, so such things torment me less and less.

It's too cruel to ask someone your age to philosophise this illness into some meaning. I would prefer you got better and started kicking ass like you should be doing.

As to recovery or improvement-
I live in a town of about 5000 people. There are four people in my town who had me/cfs(-like illneses) who have recovered enough to go back to their careers. A primary teacher, an electrician, a farmer and a heavy duty mechanic.
I have talked to the primary teacher. She was totally bedbound for five years and now says she has recovered.(I think she has been recovered for about 5 years).
I pushed the meaning of 'recovery' with her and she insists she lives a normal life now.

The electrician was sick for 8 years and now works at his own business full time, has got married and had a child.
He says has to be a little cautious not to get too tired, but is otherwise normal. He recently ran a half marathon!

The heavy duty mechanic improved after having a sinus operation. He was/is ill for 5-6 years. He is now doing 80hr weeks. I'm not sure of his level of recovery. I hope to see him soon .

Seems like a good town to live in. But maybe it skews the perception of recovery? When i look on the world wide web i can only find about 60 recovery stories from me/cfs. Things look very bleak indeed.
I can only think that improvements are so slow and unimpressive that they are not worth crowing about and tend to go unreported. And then, how many want to talk about illness afterwards?

It was a long, and no doubt tortuous wait for all these people, but they illustrate at least some people get the externals of normal life back again. As for subjective levels of bodily wellbeing, i cannot tell.

It strikes me that Phoenixrising has accumulated 8000+ members, but only has 1000 active members.(?)
Where have the other 7000 gone? Have they improved enough to move on? had enough of the internet? deceased?

Thanks for posting that- it was refreshing to hear.

Im not trying to say that because I'm on the younger side that I deserve to recover any more than anyone else- not at all- but yes the horror of potentially seeing the rest of my life go up in flames is something that's hard to swallow.

It's great to hear someone talk about full recoveries. It is definately hard to find much of that around here or online in general- I have wondered why Phoenixrising doesn't have a success stories section. That would sure make this process feel like there is some hope to look forward to if I saw former members here writing about their recoveries.

But I have to also wonder- those 5 people in your town- did they ever join an online forum? Maybe there's lots of stories like them out there that we never hear about. That could coincide with the lack of active members on this site. All of them? Certainly not, but I would like to believe that the main reason people stop going to a support forum is because they are living their lives again and returning to tell everyone is the last thing on their list. I've heard so many conflicting numbers- from 2% of people recover to 80% of people will return to normal lives and everywhere in between. Who knows what's actually real since we'll never know the true stats, but I would like to know what those recovery rates are for the very severely effected like us.

I had a client (I was a personal trainer until this) who got diagnosed with EBV CFS because she was a bit more logey than usual. However it was never had enough to keep her from working out with me 3x a week, holding her full time job, going on ski trips and usually partying every weekend. She says her energy isn't optimal but she would be considered a CFS recovery to anyone- however her starting point wasn't even 2% of what most here deal with.

So it makes me wonder, were they all as had as us? I know I havent seen anyone with the brain symptoms as severe as myself and have the SPECT to prove it, so does that mean I can't be a recovery story too? Maybe there's someone out there who was as bad as me and recovered but never wrote about it online. I sure hope that's the case, for all of us...

That boosted my spirits a bit tho, I needed that tonight. Hoping I can kick life's ass again someday. You only get one life and I have a hell of a lot that I want to do with mine, as we all deserve the chance to do

 

[Aerose91]

Also, for what it's worth I know of a professional bodybuilder who has recovered from CFS twice to return to the world of professional bodybuilding. His name is Nick Jones. How had he was at either time? I don't know but I know he has not only recovered, but recovered to the point of competing professionally in one of the most physically draining and demanding sports out there.

I would love to hear about more success stories

 

[ukxmrv]

I appreciate that you want to hear success stories at the moment but if I could go back in time and give the young me some advice it would be different. Please feel free not to read this post or comment if it is too painful.

My message is different after living almost all of my adult with acute onset viral ME. It's a message to say "yes, you will live like this and happiness will not always be denied to you - even with this terrible disease (and all that goes with it)".

My message to my younger self would to "prepare to be disabled for all your life and make your decisions based on that". Then I would be better shielded and prepared for the things that happened to me. So many life choices that I could have made would have been better if I hadn't been certain of a cure and recovery.

I've seen so many friends with ME die now from cancer, heart disease and suicide now. Not everyone is lucky like me and survives but along the way it could have been much better. The younger me needed to have been aware of this and build her life in such a way that she not only survived better but flourished as well as possible in the limitations.

Hope this is not offensive to you or anyone else reading it.

 

[taniaaust1]

Hi, I hope my story I'll share some of it with you, will give you some hope.

To your questions, Yes some with very severe ME do recover and yes some even get their brains functioning back again too.

I got ME at the age of 26/27 years old... after about 12 months of a slowly worsening state, suddenly I crashed so bad, I ended up COMPLETELY bedridden. I was among the sickest you'd come across in our ME world, bedbound for 9mths, much of that time not able to stand or walk to the toilet. I have over 90 different symptoms with my ME.. from comatose for days without waking...Im very lucky to be alive!!.. to seizure incidences, shaking to the point I couldnt eat with a fork, weakness to the point I couldnt hold my head up a lot of the time.

I couldnt handle light so had to be in dark room, lost my ability to be able to speak more then a 18mth old as my brain lost its ability to formulate sentences eg was talking in only in 1-3 words and ended up having to use my own version of sign language to express when I needed something, in intense pain (bone, muscle, joint.. even the sheets on my bed hurt me) and noise.. well that would send me shaking and spasming and into like seizure activity. I couldnt even listen to the radio softly as the beats of the music would overwhelm my brain and be torture to me.

You'd never guess where I was years after that... I actually fully recovered to the point where I was able to do marathons again.. I did one of the biggest marathons in the world after during my recovery without bringing the ME back, I even gave myself hypothermia during that marathon and even that didnt trigger off ME again. (The recover happened very very slowly over many years).

Im only sick today as if we are lucky enough to recover, we seem to be still susceptable to this illness and hence can get it all over again under some situations... never forgot that if you recover. In my case after a few years of complete wellness I caught a virus.. just a common everyday one and went to work with it. I saw no reason to slow down with it and hence went to work sick.. that was a very bad mistake. My body was susceptable during that time obviously and I then ended up with ME again. Had I have known I would always be susceptable under common ME triggering events (things which first trigger ME off in people) I would of rested that day. My crash wasnt a big one and unfortunately then while it was still mild and I belive even at that point I could of recovered again easily from that point (if I could of taken just a few months off work) but I was forced into havin to do too much and then crashed down to basically where I are today.

All this being said, my illness thou quite bad (I have to be pushed in a wheelchair to go shopping) is NOWHERE near as bad as the first time I had it and Im very grateful for that. When I got this illness back, also my severe FM and skin sensitivity never came back in with it either so Im free of those things today.

You havent had the illness a long time and may still recover. My brain was so so bad (both short and long term memory was affected with my ME) and it did recover during the remission and also since Ive crashed again. My brain was so bad that I forgot how to use simple objects eg go out to make toast but not know how to. I even one time got stuck in a room as I forgot that walls had things you open (a door) to leave a room from and hence I was looking everywhere.. including the roof, trying to work out how to get out of a room. Someone else that day had to show me how to get out of the room as I couldnt work it out.

Another time my brother-in-law (I know him well I was bridesmaid at his wedding) came to my door but my brain couldnt work out who at all he was, I knew I knew him from somewhere, but that was it. "Who are you?" (thank god my brain works far better nowdays!!!)

Try to stay postive, try not to compare yourself with other cases as each of us are different and who knows how it will be for you. There will probably come a time when you will either learn to pace better or the ME will stabilise a little and from there you may be able to work at improving more. You may seek 95% recovery now but in time you will probably adjust could could well be quite happy with less recovery then that. (even people in wheelchairs sometimes can feel like they are leading happy or decent lives).

Be open to all the possibilities you may encounter with this illness but dont think of yourself as being "stuck" in any of them. Its really quite a journey.

 

[Daffodil]

you have to find your own personal reason to keep fighting, to keep trying.

 

[JBB]

I have to agree with you it is soo very hard...a heroic battle we are forced to fight every day whether we like it or not. Often not recognized by anyone around us as to how dam hard it is. I too refuse to accept that I will live the rest of my life like this.

I have survived so far by:
1. Always having a plan of treatment which gives rays of hope. After all people DO get better, I have met some of them. There are many stories of others. There are avenues of treatment I have not yet tried.
2. Meditation / Buddhism. When your doing your plan of treatment and waiting for it to work within your set time period you can't do any more. "When there is nothing to do, do nothing" (I don't mean don't take action to get better, but we can't very well do a different treatment each day!). Meditation has kind of given me something positive to do and it seems to help my symptoms a little too (somewhere there is a study on how it helped CD4 count in HIV patients). Buddhism is essentially the study of how to be happy no matter what the outward situations are. I don't claim I can do this but I do find it helps.


Best wishes,

J

 

[xxRinxx]

I have that thought a lot. I try to stay positive and be that ideal 'Glowing disabled person'. The type to inspire and not let life get them down..but damn its hard! I got sick just before my 18th birthday, on the cusp of going to college and really starting to live my life..It was like getting hit with a death sentence. No more fun all-nighters with friends, no more marathon shopping, no more skipping meals just because i was young so who cared..Everything had stopped.

That first year of being severely sick, I was sure I was dying..just sure of it. Then I had the remission phase, and life was getting better..but then i got hit with it again, and was doubly sure, i was going to die. Now I've leveled off into a steadily disabled area of the illness. I can get around in my wheelchair as long as i watch my energy, and I have to slow down..a lot..But even then there are days I stare at my cane because of the arthritis, or my wheelchair, and just cry.

None of this illness if fair. It robbed me of my 'golden days' of youth. Where you're supposed to have awesome college stories. I wanted to travel the world and be a language teacher..now I can barely string together english, let alone german or japanese and french, that were my areas of study.

This illness is hell. Complete..hell. But it pisses me off enough to sit there and say 'welll..f*** you illness' and I pick myself up, swallow a handful of pills and vitamins, and plug on. Like hell I'm letting anything rob me of life. I want to live dammit and as long as i'm not in that bedridden state, I'm going to live. Even if it makes me exhausted, or if my whole body hurts, and my joints look even more gross than they already do..I'm doing it. My anger and determination keeps me going, which i know is an odd thing to say..but I'm a competitive person! I don't like being told what to do, even by my own dang body, haha. I'm going to keep telling everyone that will listen about this disease, hound my doctor to research it more(thank goodness he's not an asshole..), and flail around til people LISTEN about this dang disease. I'm going to laugh and smile when I can, and bitch and moan when it hurts and get over it. I throw my pity-parties, then put my big-girl pants back on, and pluck on, because at the end of the day, that's all we can do.

Don't deny yourself those moments of 'Dear god my life sucks', but having this illness DOES suck, majorly, but don't dwell on it. All we can do now is make people listen, and keep going. Because laying down(..well..metaphorically..We have to lay down right? haha), and dying is doesn't make anyone aware of this. We have to be strong and fight for ourselves, because no one else is going to.

If it says anything, I did something this weekend that I haven't done in three years since my remission phase. I went to a rock concert. I went in my wheelchair(the staff was SUPPPER nice and helpful!), I had my own little area designated for disabled people..And I had fun! I couldn't mosh like I used to, or hell, even headbang, but I was at the venue, and I could enjoy the music, even if the bass gave me a headache after a while, and by the end of the concert I was sure I was going to keel over out of the chair out of exhaustion, i DID it. It was a triumph that made me want to cackle manically in the face of ME and say "SEE!? I did it despite of you!!"

PS, sorry for the cursing, when I get scrappy my mouth runs with it, haha.

 

[Snowdrop]

I have that thought a lot. I try to stay positive and be that ideal 'Glowing disabled person'. The type to inspire and not let life get them down..but damn its hard! I got sick just before my 18th birthday, on the cusp of going to college and really starting to live my life..It was like getting hit with a death sentence. No more fun all-nighters with friends, no more marathon shopping, no more skipping meals just because i was young so who cared..Everything had stopped.

That first year of being severely sick, I was sure I was dying..just sure of it. Then I had the remission phase, and life was getting better..but then i got hit with it again, and was doubly sure, i was going to die. Now I've leveled off into a steadily disabled area of the illness. I can get around in my wheelchair as long as i watch my energy, and I have to slow down..a lot..But even then there are days I stare at my cane because of the arthritis, or my wheelchair, and just cry.

None of this illness if fair. It robbed me of my 'golden days' of youth. Where you're supposed to have awesome college stories. I wanted to travel the world and be a language teacher..now I can barely string together english, let alone german or japanese and french, that were my areas of study.

This illness is hell. Complete..hell. But it pisses me off enough to sit there and say 'welll..f*** you illness' and I pick myself up, swallow a handful of pills and vitamins, and plug on. Like hell I'm letting anything rob me of life. I want to live dammit and as long as i'm not in that bedridden state, I'm going to live. Even if it makes me exhausted, or if my whole body hurts, and my joints look even more gross than they already do..I'm doing it. My anger and determination keeps me going, which i know is an odd thing to say..but I'm a competitive person! I don't like being told what to do, even by my own dang body, haha. I'm going to keep telling everyone that will listen about this disease, hound my doctor to research it more(thank goodness he's not an asshole..), and flail around til people LISTEN about this dang disease. I'm going to laugh and smile when I can, and bitch and moan when it hurts and get over it. I throw my pity-parties, then put my big-girl pants back on, and pluck on, because at the end of the day, that's all we can do.

Don't deny yourself those moments of 'Dear god my life sucks', but having this illness DOES suck, majorly, but don't dwell on it. All we can do now is make people listen, and keep going. Because laying down(..well..metaphorically..We have to lay down right? haha), and dying is doesn't make anyone aware of this. We have to be strong and fight for ourselves, because no one else is going to.

If it says anything, I did something this weekend that I haven't done in three years since my remission phase. I went to a rock concert. I went in my wheelchair(the staff was SUPPPER nice and helpful!), I had my own little area designated for disabled people..And I had fun! I couldn't mosh like I used to, or hell, even headbang, but I was at the venue, and I could enjoy the music, even if the bass gave me a headache after a while, and by the end of the concert I was sure I was going to keel over out of the chair out of exhaustion, i DID it. It was a triumph that made me want to cackle manically in the face of ME and say "SEE!? I did it despite of you!!"

PS, sorry for the cursing, when I get scrappy my mouth runs with it, haha.

Hi xxRinxx

Some wise words from someone so young. Good for you for not giving in to despair (trying to remain positive) while allowing yourself to express your frustration (probably to mild a word).

The trick as I see it is this; people often use the glass half full/half empty metaphor. Rather than picking sides and deciding to be the optimist or pessimist, that is if you focus on the glass half-full at some point that's all you see and vice versa. Seeing both halves of the glass means as you have suggested, I acknowledge the half empty as part of my reality but I can use the half full to distract myself from getting lost in it's grip.

Sometimes we need a vacation from the constant and relentless presence of this illness.

 

[August59]

I know that my adrenal fatigue opened up the door for this to happen and they are not healed yet. However what kind if sucks is that the protocol for healing adrenal fatigue is basically the same as ME- heal and boost the immune system. I've been doing everything needed to recover from ME for 2 years now and I still got it. Very disheartening. But I know I'm not jus in a bad adrenal crash, that feels waaaaay different than this. Adrenal fatigue need did even 1/10th of this to my brain. This is a whole new monster. Also, if you do everything right with adrenal fatigue you will stabilize and start to improve. Long road, yes, but you will get better. With ME I've been doing everything right from the beginning and I continue to decline. I just can't help but wonder what it will take and since I've declined so much from the beginning if there's even a chance of becoming mostly recovered.

It would be nice if I was at least progressing. It helps a lot to put all the effort in to heal yourself and see some result from it vs just staying stable or continuing downward. Yes I want to feel what 25% improvement feels like but I want to continue past that. Who doesn't? I just can't accept the fact yet that at 29 the life I worked so hard to begin building and longed for is gone.

Here is the link to Dr. Lam's website about the adrenals and it has a phenomenal amount of information about the adrenals and it's hormones and how they affect other organs and how other organs affect adrenals. Almost all of his information makes since and I have only on one occasion seen his information contradicted and it was a minor subject.

It is a lot of reading, but take your time so you can make since out of it all.

http://www.drlam.com/articles/adrenal_fatigue.asp

Good luck!!