Would you be able to work part time?

[ryan31337]

I follow a concept that helps me deal with the ever-present temptation to take on too much work. Whilst I only work part-time hours in employment, living is actually a full-time job. As others have said, even in a mild state we can't consider commuting/ADLs/exercise as inconsequential and realising that they all count really helps. So basically I have 4x part-time jobs and thinking about it like that makes me feel a lot better

 

[worldbackwards]

Quite right. If anyone healthy wants to give up their job and be ill in my place, I'll take their health and go get a job. Deal?

 

[me/cfs 27931]

Right now, any work, even part time is impossible. It's been about 18 months since I left my last part time job.

Throughout my life, while coming out of relapse, I've started with a few hours of volunteer work once or twice a week. Eventually, when I was in remission with more energy/less brain fog, then I'd try an actual job.

Fortunately, I have some family financial support, And with an ME/CFS diagnosis, I'm able to actually apply for SSDI (2 years into this process). So perhaps in the future I won't be so dependent on family. Like many, I hate being so dependent.

Right now, I have flexible volunteer work available, but I'm just not capable yet. It's something I dream about, though.

If I do one day remit to where I can apply for part time work, I'll have a letter of reference from the volunteer work. This is essential because my actual work record is so spotty. Perhaps others have this difficulty as well.

Additionally, volunteer work helps me relearn the routine of getting up, showering, getting dressed, commuting, and working in an office environment.

I love working and being part of a team. This disease has repeatedly stolen that from me.

PS: Full time work has always ended in a multiyear mostly housebound crash for me. Now, with an ME/CFS diagnosis, decades later I finally understand that it wasn't all in my head.

 

[markielock]

Additionally, volunteer work helps me relearn the routine of getting up, showering, getting dressed, commuting, and working in an office environment.

I love working and being part of a team. This disease has repeatedly stolen that from me.

PS: Full time work has always ended in a multiyear mostly housebound crash for me. Now, with an ME/CFS diagnosis, decades later I finally understand that it wasn't all in my head.

I completely agree!! That's all I want too: a routine that keeps me focused and being part of a team and solving a problem. I can't get that if I'm unemployed at home because I wouldn't even be able to volunteer a couple of hours a week somewhere where they live. I've realised, especially today, that my experiment in working part time right now is chipping away at my health and that's further convinced me how full time work is just impossible and that it wasn't just a fluke the last time. It's awful that we're made to second guess ourselves even when we were being driven into the whilst working full time.

 

[justy]

I haven't been able to work part time for 7 years, and certainly couldn't entertain it now, I have never really been able to wrok full time and im 46 now. I am often bedbound, I use a wheelchair to go out and cant self propel, I cant cook most days, at times I cant speak as I don't have the energy to do so. People with severe/moderate M.E just don't have the choice at all. There is no aspect of working that I could manage.

I mostly miss the interaction with other people and feeling you are doing something useful in the world, and being part of the world! I did a lot of voluntary work in the past as well as paid work and I miss being part of my community. But I have no choice so I just have to deal with it.

I'm concerned that you are pushing yourself so far to your limits all the time. My long experience of this illness tells me that the harder I have pushed, the more ill and disabled I have become. I have kids, os have had to push myself beyond my limits for years. What worries me is that if you catch a flu etc you will end up even more ill from pushing it all the time. I had a remission for about 8 years to near normal that ended 8 years ago after catching measles from my kids...severely affected ever since.

But on the other hand independence is a precious thing and the thing I miss the most. Good luck with it all.

 

[Hell...Hath...No...Fury..]

In the early days about 5 years into it when i found some supplements that helped drastically i started doing voluntary work to see how many days out per week i could manage. Even when doing great, i think i only managed one afternoon per week for i think it was 3 weeks

I then tried something else; doing a university science degree from home to see if i could keep to some routine. It turned out that i was studying (minimal amounts) almost round the clock just to be able to read the massive amounts of texts and equations to be able to keep up with everyone. Others were maybe doing 3-4 hours per day while i was working maybe 12 per day to accomplish the same amount of work.

There was never enough time to have recovery time. Lecturers gave me extensions when necessary and i never attended any in-person classes.

I got half way through the degree. Then met someone, and was in a relationship for a while which meant the Uni degree was now no longer remotely possible.

Still to this day it is half completed.

I then had a small online business for a couple of years, unfortunately it became so popular that even from home it was draining the life out of me, non stop demanding customers, answering customers questions round the clock. Until it got too much, after thousands of questions answered, i just couldnt keep going even though it was a success.

Now i'm in a relationship again there's no chance of even attempting to try anything. I have to be single to even begin to have enough energy to do things.

I now manage to make jewellery from home (i attempt to make one thing per week but often dont manage it) and i'm saving up the pieces i make to one day sell. I could sell them now but i'm not mentally ready to deal with customers again yet and i dont want to feel pressured to produce anything otherwise i would just stop doing it.

I really enjoy it but like with everything else; whatever i use, i lose, so the rest of the time my fingers dont work correctly. They dont co-ordinate and i cant hold things or drop things and struggle to type.

If i happened to die before i started selling, i've wrote down that i want the pieces sold where poss and all moneys to go to Phoenix to be used for whatever is most useful.

I cant see myself ever being able to work part time unless things drastically change. Its such a huge struggle just trying to live part time