The Lost Years

[purrsian]

Gradual onset, sick 13 years so far but first few years weren't as bad. Diagnosed in 2006 but sick since glandular fever in 2003 in my last year of high school (17 years old). No remissions, just ups and downs. Roughly a 25/100 on the CFS rating scale now, haven't been above 40 since getting sick.

I look back at school and just think my gosh, how did I ever leave the house 5 days a week and do stuff on weekends too?! It's just such a foreign concept these days.

 

[PNR2008]

Saddened beyond words at not being able to have children.

I have felt this too. Before I got sick at 39 years I was looking into adopting an older child but didn't even start after April 1988 onset. I felt that it was better for the child and myself not to have or be a sick parent. The choices that are made when one is well, owns a house and has a good job is a world of difference when you become sick, go on disability, and can't get out of bed.

 

[KristenSF]

Two years and six and a half months. The last year I've been mostly housebound. I've been getting a lot sicker in the last two months. My heart bleeds for all of us, but especially those who get this at a young age. I didn't, and I'm sincerely grateful for all the decades of healthy life experience I had.

If I could give advice to healthy young people (and I don't because I don't know any and I'm a shut-in) it would be to take every opportunity to travel and learn, and love someone who loves you in return. One of the saddest MECFS stories I read on a blog somewhere involved a woman who had the "perfect life" and her husband left her and took the children when she was no longer perfect.

Six months ago my greatest wish was to get just a little bit better. Like, 10%, but I'd settle for 5%. Today I just want to stop getting sicker. I got some really alarming lab results yesterday that indicated a drastic, sudden decrease in kidney function -- something I've never had a problem with before. My doctor had me go back today to retest and I'm hoping it's just a fluke.

I was reading another thread here tonight and 'keeping a positive attitude' came up. I LOL'd. Keeping a positive attitude definitely makes people around me feel better, but it has zero impact on my health!

Having this miserable condition is the worst, but I'm grateful to have found the PR community. My guess is that most people who suffer from this go undiagnosed and never find their way here.

 

[kms1990]

~ 9 years. Ups and downs. I believe I am on the right track for me in regaining my health. About 30-40% of my prior health on any given day. Treating tick borne illnesses and "undercover" autoimmune phenomenon.

 

[perrier]

Nine years and counting. Gradual deterioration over that time. Not yet housebound but I feel much better if I don't have to go out (except to potter around the garden!). No remissions but slightly relapsing/remitting on the gradual downwards slope....

Interesting to read that the most common trend seems to be for slow deterioration...
Come on Fluge and Mella!

. Yes indeed, come on Researchers. Please help

 

[perrier]

Two years and six and a half months. The last year I've been mostly housebound. I've been getting a lot sicker in the last two months. My heart bleeds for all of us, but especially those who get this at a young age. I didn't, and I'm sincerely grateful for all the decades of healthy life experience I had.

If I could give advice to healthy young people (and I don't because I don't know any and I'm a shut-in) it would be to take every opportunity to travel and learn, and love someone who loves you in return. One of the saddest MECFS stories I read on a blog somewhere involved a woman who had the "perfect life" and her husband left her and took the children when she was no longer perfect.

Six months ago my greatest wish was to get just a little bit better. Like, 10%, but I'd settle for 5%. Today I just want to stop getting sicker. I got some really alarming lab results yesterday that indicated a drastic, sudden decrease in kidney function -- something I've never had a problem with before. My doctor had me go back today to retest and I'm hoping it's just a fluke.

I was reading another thread here tonight and 'keeping a positive attitude' came up. I LOL'd. Keeping a positive attitude definitely makes people around me feel better, but it has zero impact on my health!

Having this miserable condition is the worst, but I'm grateful to have found the PR community. My guess is that most people who suffer from this go undiagnosed and never find their way here.

Very touching post.

 

[perrier]

21 years, 1 month, 8 days. How can I be so precise? Because I have never felt anything like when I caught this horrid plague. I knew something was extremely wrong from the moment I was infected. One incredible remission last spring for 3 1/2 days where I felt like this thing completely left my body.

The one great hope I have is during those 3 1/2 days I felt completely back to normal so I'm hoping minimal permanent damage has been done to each and every one of us if "they" would ever find the root cause. Keep on keeping on people! One of these years.............

What you describe is fascinating. So many young people went to bed one night, and the next morning woke up with this illness,and said they knew immediately something was horribly wrong.

 

[perrier]

I think it would be valuable to collect these entries and place them on the researchers' desks

 

[DeGenesis]

7 years. 18-25. I've had a few significant remissions. Never to 100% functioning, and each subsequent remission is shorter and my functioning is never as good as the one before. My last remission is ended roughly one year ago. I'm getting increasingly worried that I won't have another chance and that it will be straight down from here.

Every time I gained some functionality I eventually blew it with sustained overexertion (crash layered on a crash), until now I can't push myself that hard even if I wanted to. I will never know if I could have had a sustained remission if I had treated myself differently, but I don't think there is much point in focusing on that.

I try now to make a point to those in early stages of the disease to take it easy. I myself tried to force my way though work, school and having a social life as I was getting increasingly sick. I still have none of those things, but that seems small compared to not being able to move around my house.

 

[Angel27]

20 years, 2 months. No remissions. Gradual deterioration after acute onset.

 

[Jan]

Two years and six and a half months. The last year I've been mostly housebound. I've been getting a lot sicker in the last two months. My heart bleeds for all of us, but especially those who get this at a young age. I didn't, and I'm sincerely grateful for all the decades of healthy life experience I had.

If I could give advice to healthy young people (and I don't because I don't know any and I'm a shut-in) it would be to take every opportunity to travel and learn, and love someone who loves you in return. One of the saddest MECFS stories I read on a blog somewhere involved a woman who had the "perfect life" and her husband left her and took the children when she was no longer perfect.

Six months ago my greatest wish was to get just a little bit better. Like, 10%, but I'd settle for 5%. Today I just want to stop getting sicker. I got some really alarming lab results yesterday that indicated a drastic, sudden decrease in kidney function -- something I've never had a problem with before. My doctor had me go back today to retest and I'm hoping it's just a fluke.

I was reading another thread here tonight and 'keeping a positive attitude' came up. I LOL'd. Keeping a positive attitude definitely makes people around me feel better, but it has zero impact on my health!

Having this miserable condition is the worst, but I'm grateful to have found the PR community. My guess is that most people who suffer from this go undiagnosed and never find their way here.

Hi Kristen, this must be so frightening, did you get the results from the second tests? Praying they were ok x

 

[KristenSF]

Hi Kristen, this must be so frightening, did you get the results from the second tests? Praying they were ok x

Thank you so much, Jan. The second tests were better but still abnormal and I'm awaiting the results of repeat tests I had late last week. I see my doctor next week and I'm hoping he'll be able to figure this out.

 

[Cohen2]

14 Years for me onset at age 14. Mostly house bound for last eight years with no remissions. Am gradually deteriorating and there's a feeling of permanent damage

 

[maccas dad]

This is my first post on the site. I have found this thread really interesting and of course saddening. I wonder how many of the long term sufferers have been that way from day one of a severe crash or if things have progressively crept up on them. Anyway to stay in the same condition for 20 years plus is just awful. I crashed severely 5 years ago and like many am juggling life the best I can.
I am constantly trying to determine how things came to this, I am 63 now but wonder if I possibly inherited the condition or the onset was when I was very young. At 6 years of age I was quite poorly with colds, earache and loss of weight. My parents were so worried that my grandfather paid privately for mr to have my tonsils and adenoids removed. The consultant at the time said he had never seen so much grunge in anyone's sinuses.
At 21 I caught glandular fever but considered I recovered reasonably well. At 38 during intensive physical training I developed dilated cardiomyopathy but subsequently my heart returned to normal but left me with arrhythmias which I deal with on a daily basis. I can only really say that I have lost 5 years but there was a slow deterioration over many years until the big crash. I wonder sometimes if this illness explains, poor concentration at school, difficulties in absorbing information, alcohol intolerance, a need for food and a good nights sleep and if I have in some way been deprived me of achieving more in life, not that I am complaining at my lot you understand as I consider myself very lucky in most respects. I am saddened however that many people feel that their condition is deteriorating and only hope like me that we wake up one day and we feel totally better. Sorry for the long rant but it's nice to get it off my chest.

 

[Little Bluestem]

30 years, 9 months. Following an initial near recovery, it has been a slow steady decline. I get out of bed every day (if only to eat) and leave the house several times a week. I have not worked since the last century (I did not leave my job voluntarily).

I can't help but wonder if I had known what the problem was and rested sufficiently instead of pushing myself to keep going with all of the things I was doing, I might have actually recovered. I told the doctors twice that I was not recovering well, but they just said that since I had a low temperature and low while blood cell count, I could not be sick. Notice that they said low, not normal.

 

[TedBakerBoy]

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.

 

[josephine2]

34 years with many partial remissions but never got back to 100%. I used to be able to pinpoint the exact date of onset but as the decades passed, I stopped remembering. I had mono age 16 and recovered. I remember that. So I am guessing in my early 20s I got ill. But I did not take care of myself early on with this condition since doctors did not know what to do or how to treat. I wasted alot of time when I should have been working on recovering. I tried to work but would always burn out and end up on disability. The latest battle was tapering off Lunesta which had been my friend for sleep these last 10 years but turned on me.

For young folks. Do not be afraid. There is so much more you can do for yourself than when I was young.

 

[knackers323]

21 years, 1 month, 8 days. How can I be so precise? Because I have never felt anything like when I caught this horrid plague. I knew something was extremely wrong from the moment I was infected. One incredible remission last spring for 3 1/2 days where I felt like this thing completely left my body.

The one great hope I have is during those 3 1/2 days I felt completely back to normal so I'm hoping minimal permanent damage has been done to each and every one of us if "they" would ever find the root cause. Keep on keeping on people! One of these years.............

Any idea on what brought in those 3 days?

 

[Sandman00747]

Knackers323, I have been searching for any hint in my diary. The only clue I have found is that my temperature had been rising bit by bit every day up to that day of remission. But my temperature has remained much closer to normal despite the fact I have relapsed many times since those 3 1/2 days.

I wish all of us could at least have a few days like that every so often. It did wonders for my mental health as well as convince me this can all be unraveled with the proper therapy. But I want to stress the point that every symptom resolved during those 3 1/2 days, every single one! That is what gives me great hope for all of us in the near future that someone will solve this mystery. I assure you my immune system is certainly nothing special!.

How in the world did my body do that after all these years? I sure wish I could answer that as do millions of other people! I will keep searching I promise you!

 

[Little Bluestem]

@TedBakerBoy - many of us long-timers are like josephine2. We had no idea what was wrong, were blown off by the medical industry, and did all of the wrong things. I doubt that we have all be completely sane at all times.

As Josephine2 said, there is much more information available now. The newly diagnosed have a much better outlook. While there is still no cure, there are a variety of things you can do to reduce your symptoms and improve the quality of your life.