What job do you have?

[16bit]

I'm interested in seeing what jobs people with CFS have! Please share, if you wouldn't mind.

I am a stock assistant. I work mostly at the back. I unload deliveries, unpack it and replenish the stock.

It's for a home furnishings store, so that includes handling paint, rugs, curtains, etc as the heaviest items (besides furniture itself). Lighter things involve cups, ornaments and stuff.

But I am looking to change jobs. As much as I love the physical aspect, it's too much physically at times. It's hard for me to bounce back from it.

Sometimes I serve customers, but only if they lack the staff and usually just to cover breaks. I hate this and it helped me to realise I do worse with demanding mental activities. My sick days skyrocketed after doing this a lot.

So I wish to avoid customers if possible. Just not sure what to look into next! It'll be interesting to hear what everyone else does.

 

[Wonko]

Job?

 

[16bit]

If you're a working person, @Wonko

 

[TiredSam]

Self-employed. Teach adults. 15 hours a week. I can do it sitting down and plan my timetable which makes it possible.

 

[Snow Leopard]

N/A

 

[Dainty]

After about a decade of being completely unable to work, I now have a few jobs:

• I'm a housekeeper at a small bed & breakfast (3 rooms) designed for folks with severe MCS. This is by far my most strenuous job. I'm on my feet the entire time, whether it's cleaning, preparing food, baking, laundry, or helping a guest with something. I work there 3 days a week, 6 hours/day. Like @16bit, I find the physical activity is not as bad as mental strain. The environment is very focused on healing and relaxation, and I have an incredible boss, both of which contribute significantly to being able to work this job. I lay down during my breaks and nap after work to recover. This is my only job where I'm an employee.
  
• I chat online at a specific website that pays me $50/week to make conversation and report bugs. This gig has no set times associated with it, so I can work it around whatever schedule my body is doing. And though so far I've managed to get the full $50 nearly every week, anytime I'm not feeling up to it I can let it go that week. There's no obligation to do a certain amount every week or every day, and that makes it less stressful.
• I host testing phones for a company that does quality assurance testing for phone app programmers. This involves receiving the phones they send me, purchasing specific plans for them (all costs reimbursed), and then leaving them plugged in at home. Every once in a while I get a text to reboot a phone, so I do that. This gig currently gets me $150/month.
• Various other stuff as I'm able, though with my new job I've cut back a lot. This includes focus groups, cleaning for an old client, petsittitting and housesitting, and whatever other miscellaneous stuff I feel I can do. I am officially self-employed on top of my part-time job, and I hope to do more with that in the future especially with regards to writing.

It has been anything but easy to find stuff that works for me. And the new part time job still leaves me more exhausted than I'd like. I'm always in the process of figuring out what works best for me!

 

[MeSci]

I'm interested in seeing what jobs people with CFS have! Please share, if you wouldn't mind.

I am a stock assistant. I work mostly at the back. I unload deliveries, unpack it and replenish the stock.

It's for a home furnishings store, so that includes handling paint, rugs, curtains, etc as the heaviest items (besides furniture itself). Lighter things involve cups, ornaments and stuff.

But I am looking to change jobs. As much as I love the physical aspect, it's too much physically at times. It's hard for me to bounce back from it.

Sometimes I serve customers, but only if they lack the staff and usually just to cover breaks. I hate this and it helped me to realise I do worse with demanding mental activities. My sick days skyrocketed after doing this a lot.

So I wish to avoid customers if possible. Just not sure what to look into next! It'll be interesting to hear what everyone else does.

Most of us can't work, not even part-time. I worked part-time for a few years after managing to do a couple of home-based degrees (it wasn't degree-level work though - far from it - just selling plants from home). It got harder and harder and one day my brain packed up, and the last 6 months of my supposed working life were just spent living off pensions that had luckily matured, less half the accrual from a working life that I would have had if I hadn't got ill.

Hope that makes sense.

 

[ScottTriGuy]

Part-time, research, counseling, sitting, do quite a bit via skype so minimizes travel time/exertion.

 

[16bit]

Most of us can't work, not even part-time. I worked part-time for a few years after managing to do a couple of home-based degrees (it wasn't degree-level work though - far from it - just selling plants from home). It got harder and harder and one day my brain packed up, and the last 6 months of my supposed working life were just spent living off pensions that had luckily matured, less half the accrual from a working life that I would have had if I hadn't got ill.

Hope that makes sense.

Yes, I have gathered that most are unable to work. It's tough. I had to pause my studies to recover from a relapse, but that has been my only disruption (in terms of money sources taking a hit).

I work part-time, but I want to work full-time because I need more money. I just have no idea what is best to do, especially if I am going to jump up my hours! It's good to think of what's out there, and what works for those who can work.

I feel like my workplace is taking a toll on me in a similar way. I 100% know I cannot sustain it and am lucky that I have managed to do so for so long. There were many points where I thought I couldn't continue any longer... but I am getting through it so far, thanks to medicine.

 

[MeSci]

Yes, I have gathered that most are unable to work. It's tough. I had to pause my studies to recover from a relapse, but that has been my only disruption (in terms of money sources taking a hit).

I work part-time, but I want to work full-time because I need more money. I just have no idea what is best to do, especially if I am going to jump up my hours! It's good to think of what's out there, and what works for those who can work.

I feel like my workplace is taking a toll on me in a similar way. I 100% know I cannot sustain it and am lucky that I have managed to do so for so long. There were many points where I thought I couldn't continue any longer... but I am getting through it so far, thanks to medicine.

You just mustn't overdo things, or you may push your luck too far.

I did a bit of science-based work before doing the plant work, but that was from home too. I guess it paid for my degrees, which I had to pay a bit for, but it wouldn't be possible now, I don't think, as the costs have risen so much.

 

[Manganus]

My last ten years in the productive world, I worked as a night shift psychiatric aide at a ward for "demanding cronical cases" (adults prone to acting out), where fights and bites ocurred infrequently. Maybe I should call it a nursing home, although it was a closed institution. In that setting, calmness and forbearance/patience was important qualities, that I could offer.

I certainly made mistakes and errors, but by and large it was a perfect match to my condition. I believe I did a good job - sometimes a very good job.

I spent many hours sitting in a chair beside the bed of a restless patient, or in a sofa in the corridor to see that sleepless patients didn't disturb eachother. (...and that the communal toilets were tidy.)

It wasn't particularly well paid, but I was happy to be able to work.

 

[ebethc]

Here are some resources for part time jobs (mostly "gig economy" jobs, plus airbnb)... You can see how much ppl make to see if the "risk:reward" is worth your while...
https://priceonomics.com/how-much-are-people-making-from-the-sharing/

 

[arewenearlythereyet]

Food marketing and product development ...basically I think up new product ideas and launch them into retail stores. I can do most of this at my desk with a work from home day on Wednesdays and some adaptations. I do struggle to work the 38 hrs full time and have recently lost my job (my employer didn't like the adaptations and my reduction in hours to just the normal).

I'm now looking at short term interim contracts working for myself. Hopefully I can take long breaks in between contracts. There is no protection being permanently employed when you have this disease unfortunately, so I might as well work less hours in the year for the same money. hopefully that plan will work out? There's not much part time work in my line. I'm 50 next year so I'm hoping I can scrape a living until 60. There's not much point working myself into further deterioration so it's a bit of a juggling act.

 

[Dainty]

There's not much point working myself into further deterioration so it's a bit of a juggling act.

This. Exactly this. Thanks for putting it so well!

 

[Alvin2]

Try not to kill myself by doing dangerous tasks that include driving a motor vehicle, grocery shopping, preparing meals, doing laundry and attempting to mop the floor and clean the washroom.
These are all unpaid tasks

 

[wonderoushope]

I have my own little art business. Where I sell art prints and greeting cards online, I also sell wholesale to retailers. My shipment days are between 1-5 days, so I do my work on the days I have more energy. I usually own work a couple days a week at the moment as my health has deteriorated lately and trying to concentrate on improving my health.

I am not creating new art at the moment, just doing the orders I have.

It's funny, I kind of instinctively knew something wasn't right before I got really sick. I was getting heaps of headaches at work beforehand and just said to myself, I can't work for others anymore, I have to find something where I can work on my health. About 3 months after I quit my work (and had already designed art range and selling), I got really, really sick and felt like I was on deaths bed. At that point it was really hard to do orders, but I somehow struggled through. Very grateful that I have this little business.

I don't want to post my work on here, just due to google searches and private things I have written on here.

 

[confetti11]

Like others have mentioned, it really depends on your level of health as to what job may work for someone.

Except for a few periods of time here and there, I've so far always been able to work. I get tons of treatments though.

Over the years, I've learned that I just have to mostly have jobs where I call the shots in terms of when I work (unless it's from home, then I can be on a schedule). Typically (unless I'm in a relapse), I can work a lot as long as I can control when to push the gas and brakes.

(I have had periods where I worked full time directly for someone. I can still pull that off somewhat when I feel my best. Absolutely no desk jobs for me though. They make me feel worse than almost anything.)

The kinds of jobs I do are:

1. Scoring tests online from home
2. Retail merchandising
3. Mystery shopping
4. Grocery delivery services like Shipt
5. Working as a real estate agent
6. Writing online articles

That's all I can think of at the moment. I do a bunch of small things to make a bigger income. That way, I can ebb and flow when I need to.

 

[tyson oberle]

With ME/CFS I wouldn't be able to do a normal job. I am a self-employed automotive locksmith. I am lucky that other locksmiths refer customers to me which accounts for about 95% of my jobs. On my own I could have never accomplished getting a steady flow of customers. And so I'm lucky to be able to make money by driving to different locations to open cars that have keys locked inside or make keys to cars when people have lost their keys or just want a spare. None of which is very physical and often not very time consuming, but it is still exhausting for me. I generally do 2 - 5 jobs a day. The worst part is usually from my phone ringing which is very irritating to me (getting on average 5 telemarketing calls per day doesn't help either). Sometimes I don't answer my phone because I'm too exhausted mentally or physically and so I miss some potential jobs. I estimate I probably loose about $300 a week by not answering all my calls or by simply not accepting some jobs, but I have to pace myself otherwise it would catch up with me and I would be in bed all day and I would still miss jobs anyway. If it weren't for this job I would be in serious trouble to support myself even though I have no wife, no kids, no girlfriend, and not even a pet to take care of. I suppose I could probably make an extreme effort to have a normal job working for someone by being some sort of a delivery driver as long as if it wouldn't be too physically/mentally demanding , but I would still probably be in constant danger of being fired for being too slow from trying to pace myself.

 

[juniper]

At the moment I'm quite fortunate to work as a primary school teacher - although most of my day is spent sitting at a desk and i have students bring work to me. I also usually dont move too far from my classroom (less walking and therefore less socialising with colleasgues which is a real drainer). I take regular days off too!

...i also dont have a life outside of work - all i do is work, crash, and sleep...repeatedly. Not quite what I'd call quality of life ☹

 

[jason30]

IT job, support engineer