How many years before you had to quit work?

[Moof]

I worked full-time with mild/moderate ME for 38 years. Eventually I also developed a form of inflammatory arthritis, which causes fatigue; at that point, I had to stop. I struggled on for a year or so with it, but I was just getting more and more ill.

Had I not developed the arthritis I might possibly have been able to carry on until state retirement age (another 10 years), but it's very unlikely I'd have been able to work full-time until then.

The nature of my job was an important factor. I managed my own workload, I could work at home when I needed to, and for most of the time I could pace and switch as required. Perhaps 35% of the work was routine and very familiar, so I could almost do it in my sleep; I saved those tasks for when I was struggling, and used my best hours for the most challenging work.

Giving up was a good decision, and ultimately I'm glad I was forced into it. If I had managed to stagger on until retirement, I would have been in very poor shape by the time it came around.

 

[Rufous McKinney]

My version is: I'm the sick kid, who got Mono 4 times. Including in graduate school. But I was able to keep up with many others, altho I'm last to reach the mountain top, not first. I hiked for a living for almost 20 years, but was always just more wiped out than everybody else. They seem unphased, or just tired. I am: wiped out again.

Somehow I actually worked full time for at least 30 years. The last 15 were VERY hard.

Factors which allowed me to work:

1) home office
2) access to sick leave, and an accumulation from the first ten years I had not used.
3) self directed work: I chose what I worked on, mostly.
4) a federal program allowed me to use sick leave in the last three years, which was when things go really really intense and unmanageable.

But in the last year: I retired and my symptoms have gotten far worse. THAT WAS NOT THE PLAN.

 

[Rufous McKinney]

The nature of my job was an important factor. I managed my own workload, I could work at home when I needed to, and for most of the time I could pace and switch as required. Perhaps 35% of the work was routine and very familiar, so I could almost do it in my sleep; I saved those tasks for when I was struggling, and used my best hours for the most challenging work.

Yes, mine was similar. Except I was also doing 'rocket science". I was doing REALLY mentally hard work. REALLY REALLY Hard. I wiped out by mentally exhausting work. Not so much the physical. And of course, emotionally, that was very hard to deal with: so add that.

 

[Moof]

But in the last year: I retired and my symptoms have gotten far worse. THAT WAS NOT THE PLAN.

Nooooo! That's really bad luck. I've been rather better – I still have ME, but it's easier to manage now I can rest & recover whenever I need to.

 

[Rufous McKinney]

Nooooo! That's really bad luck

It seems that this worsening is such an enigma. But I experienced a multifaceted SEVERE trauma.

that likely explains that some hard to comprehend level of personal stress demoted my condition from lousy but slightly tolerable to: uh OH.

(our rental cabin with most of my life inside it: burnt to the ground.). My entire career also incinerated. Every book gone. I had no home for six months. I got two VERY severe gastrointestinal infections that I still don't understand. If that is just the flu, why am I almost dead?

In fact, I wonder if I am supposed to consider the gastro events to be: the cause of this ME. Ignoring the prior 55 years. It did somehow make everything MUCH worse.

Yeah- that was lousy luck- but there are few exemptions from- the Trials and Tribulations of Life.

Rocks are coming down the mountain- seek cover.

 

[Moof]

I experienced a multifaceted SEVERE trauma.

It sounds horrific, and few of us would come out of that well. I really hope things start to pick up – even if it's a longish road, you will hopefully start to see some improvement eventually.

 

[Rufous McKinney]

you will hopefully start to see some improvement eventually.

Thanks for your kind words.

My husband and I are the types to: not let loosing most of ones "stuff" get the better of us. We aren't going to let the God of Fire and Renewal, park in Fire.... we seek Renewal.

But its just a super intense experience and I was not physically in any condition to process that intensely.

So I just try to take each day, and make it thru. It remains challenging...but we Persevere.

 

[Snow Leopard]

0 years (Illness onset before working age).

 

[rel8ted]

When I first became ill, I worked for about 2 years. I wish i’d had the luxury to stop sooner bc I became mostly bed bound shortly after that. I then gradually improved enough to work again, although with consequences & did that for 10 years until I had a major, major crash again. This time I have bad neuro symptoms and Dysautonomia as well, so I’m mostly housebound.

 

[godlovesatrier]

Moof and Rufous your experiences of working but it being VERY had as you put it, appear to be outside the main trend. Even so this is what I am hoping for as 75% of patients seem to suffer from a degenerative form of the disease whereas the rest of us do too but it seems to go at a significantly slower rate than the majority, which is odd but I am sure there will be a genetic and biological reason why this is the case.

Thanks again for all the replies