The Lost Years

[me/cfs 27931]

ME/CFS for at least 38 years (age 15) following a viral infection. Year 1978.

However, neuro symptoms, vision symptoms, and episodic PEM go back 47 years (age 6). Year 1969.

I have no memory of ever being symptom free. Have experienced about 8 partial remissions as an adult, allowing a college education and a few years of employment.

Misdiagnosed by dozens of doctors until 2015. I lost decades of understanding the cause of my bewildering symptoms and how to manage them.

Unlike siblings and peers, I lost having a career, having children, hobbies, travel, friends, retirement savings.

I lost the ability to be self sufficient. I lost the ability to work. I lost my self respect. I lost the ability to drive. To ride a bicycle. At times, I lost the ability to walk. For several years, I lost my sense of smell. During severe crashes, I lost the ability to speak in complete sentences.

After each major multi-year crash, I lost memories, cognitive function, and another piece of who I am as a person.

Without family financial support, I likely would have lost my life.

 

[Jennifer J]

It's interesting and sad to see how many haven't had any remissions. Going on 16 years for me, no remissions, mainly bedbound the past 13, slowly deteriorating. I do think I've had this most of my life or something, higher functioning before yet still limited and paced myself and didn't do a lot of other things so I could rest. I was sick all the time missing school and work.

20+ if anybody hasn't told you yet: you guys are freaking heros in my book!!!

Determain, strong and made of the real stuff!!!!!!

All of our stories, regardless of duration, are a tragedy.

keep hoping, for all of us, a major breakthrough that "stops this clock ticking", and starts another -- this time to record our months in good health (or at least much-improved).

The above posts paint an appalling, tragic .....and powerful........picture.

Quite shocking!

Shame on our governments that have allowed this to happen with no attempt to control the spread of this devastating disease!

My heart is breaking for everybody. I read each post and I gasp. It %#@! me off that this isn't being handled with more urgency and care! Hugs to everyone.

 

[CFS_for_19_years]

26 years and 2 days.

 

[PNR2008]

Almost 28 years, sudden onset but I had symptoms of POTS starting in childhood. One good thing is I got very sick at age 39 years. Therefore I had a life that I was proud of beforehand; had 2 careers, married, divorced, owned two homes by myself, raised German Shepherd Dogs and more often than not loved my life.

I say this not to boast but convey my feeling of deep sadness for those of you who got this illness at a young age. I knew who I was at my core. Having said that maybe there is more to lose, more devastation when you are older. I don't care about who suffers worse, I am concerned that we had to suffer profusely for so many useless years. I believe that to have ME/CFS for one year is one year too long.

I hold on by my fingernails these days, hoping for something to hope for and many times I wonder why I'm holding on at all. It must be in my DNA to not give up.

 

[arewenearlythereyet]

3 years 6 months since entero virus infection. Last yr remission of sorts (no brain fog and able to walk unaided now) but within my restrictions (no heavy lifting or prolonged standing or cardio exercise). Work full time (just about). About to lose job though due to lack of overtime and my perceived "commitment to the role"

Relative newbie and ever hopeful that treatment and medical acceptance will come to improve everyone's quality of life.

 

[taniaaust1]

Next year will be my 20th anniversary of first getting ME . It was in 1997 when I got ME when at college. (I was 26-27 years old)

I did have a 2-3 year remission though in that time (thanks to aggressive rest therapy and just having some good luck) but caught a virus going around and got ME all over again.

This thread shows just how much of a tradgety this illness is.

 

[Artstu]

How much of that is just normal ageing adding on top of a very low baseline from ME, or progression of ME itself, I don't know.

I wonder about that, I'm ten years older now, I think I'm lucky to have been able to regain some of my mobility and fitness, so I'm able to go for walks or bike rides as long as I keep my total physical activity to around two hours for the day, the rest of the day I'm resting with minimal mental expenditure.

 

[ryan31337]

a quick question: has anybody have ME since childhood?

Yup. 21 years. Gradual onset aged 10. EBV at 11 pushed me over the edge, resulting POTS, PEM, reactive hypoglycemia, severe migraine etc.

Gradual partial recovery throughout my teens without any intervention other than very strict activity management. Enough to get me back to school and through undergrad university with careful management.

Last 10 years have been periods (a few years at at time) of big crashes with comorbidity involvement, alongside decent partial remissions.

 

[TiredSam]

3 years of mild ME (I daren't write anything stronger than "mild" after reading all the above posts ). Currently able to work 10-15 hours a week, virtually no social life or hobbies. Slow but significant improvement over the last few months, which means I can be fairly symptom free most of the time if I behave myself. That in itself feels like a huge improvement to me, especially if I continue to ignore the fact that I still can't go for a walk, go shopping, help with housework, be as involved in parenting as I should be, get through a day without sneaking off and lying down every 3 hours etc etc.

Consider myself very fortunate that I only got this when I was 47 (when I was fairly established / independent, kids were getting older, I'd had a life), and at a time when the internet was around so I could research and inform myself and get into strict pacing after about a year since onset. Hopeful that I may continue to improve (don't know how realistic that hope is, but I can't stop hoping) or that we are closer to a treatment and cure than we've ever been.

 

[slysaint]

15 years. Acute onset after pneumonia. 5 years housebound. Improved a bit (when I moved to the coast) thro better management (but no remission).

 

[paul80]

21 years, since age of 15. Slow deterioration. Last 5 or 6 years have been severe.

Only had one remission for about 10 days, that was when trying Rich's methylation protocol.

Always wonder if i hadn't got glandular fever as a teenager would i have never got M.E.

 

[paul80]

This thread shows just how much of a tradgety this illness is.

It's horrible, and it's hard not to think about all the fraud and deception that went into making sure no one got any help.

 

[worldbackwards]

26 years and 2 days.

And here was me hoping that at least if I got to 20 years I could beat you.

 

[worldbackwards]

3 years of mild ME (I daren't write anything stronger than "mild" after reading all the above posts ). Currently able to work 10-15 hours a week, virtually no social life or hobbies. Slow but significant improvement over the last few months, which means I can be fairly symptom free most of the time if I behave myself. That in itself feels like a huge improvement to me, especially if I continue to ignore the fact that I still can't go for a walk, go shopping, help with housework, be as involved in parenting as I should be, get through a day without sneaking off and lying down every 3 hours etc etc.

Dilettante

 

[TiredSam]

Dilettante

Well I thought someone should speak up for the beginners. Don't go provoking my competitive streak like that - I might go 30 years just to spite you ...

 

[worldbackwards]

Well I thought someone should speak up for the beginners. Don't go provoking my competitive streak like that - I might go 30 years just to spite you ...

I tend to find that it's the "young" ones who are still angry. You should keep that; it's hard to stick it out for 20 years.

 

[slysaint]

it's hard to stick it out for 20 years

have you been 'looking at women' again

 

[worldbackwards]

have you been 'looking at women' again

Made me do a proper LOL there.

 

[BruceInOz]

22 years 2 months and 6 days (just for those who like precision). My wellness has waxed and waned but it never waxed enough for me to see it as remission. Sort of waning the last few years.

 

[Jan]

Interesting that so few have any remissions, when some like to describe it as a relapsing/remitting illness. I think most of us just have varying degrees of unwellness and symptom severity. In my 26 years I have never been well enough to work again.

I have difficulty translating the mild, moderate and severe spectrum. I think I fall somewhere between moderate and severe, but with PEM, migraine and neuralgia I fall back into severe. With assistance I can usually leave the house for a few hours once a week, but I know I will have to suffer for this. I choose to do it to give my brain the stimulation it is desperate for. If I was alone I would be housebound.

@TiredSam it doesn't sound particularly mild if you can do nothing else other than work for 10-15 hrs a week. If you did housework etc it sounds as if you wouldn't be able to work at all.