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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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ME/CFS and work?
- Thread starter Rebarns
- Start date
I work full time in IT.
It's a big organisation in the public sector.
I've switched jobs after becoming ill.
Before that I worked as a software developer for a company.
Even though superficially the jobs are comparable, in real life they are day and night:
compared to my pre-CFS productivity I'm on 20%
I think this is more or less the only job I can handle full-time.
It's a big organisation in the public sector.
I've switched jobs after becoming ill.
Before that I worked as a software developer for a company.
Even though superficially the jobs are comparable, in real life they are day and night:
compared to my pre-CFS productivity I'm on 20%
I think this is more or less the only job I can handle full-time.
- I've got my own office and with my iPhone I can block out noises
- not a lot of meetings
- my own dedicated work-area
- very few dead-lines + no strict monitoring of my results
Before the illness I've developed single-handledly software with more than 100.000 line of codes.
Today I'm happy if the code is not more than 50 lines
Btw on the CFS-scala I'm on 60.
@FinRinTin
Wow that is so good you can do that, even though it's less than before!
I'm currently in retail and it's about the worst job I could have with this illness, I'm in the unfortunate, but not uncommon, situation where I am surrounded by disbelief of my illness, so most people don't understand my need of a new job.
My current job causes me so much pain and such desperate fatigue which anyone with ME will understand but most people see me as just "tired".
I'm also young so I don't have a lot of experience, making it very hard to move into a new job!
Wow that is so good you can do that, even though it's less than before!
I'm currently in retail and it's about the worst job I could have with this illness, I'm in the unfortunate, but not uncommon, situation where I am surrounded by disbelief of my illness, so most people don't understand my need of a new job.
My current job causes me so much pain and such desperate fatigue which anyone with ME will understand but most people see me as just "tired".
I'm also young so I don't have a lot of experience, making it very hard to move into a new job!
Haley
Senior Member
- Messages
- 1,178
- Location
- NSW Australia
I'm in the process of studying for a new career because my current job causes a lot of fatigue and pain (I walk around 3km of an afternoon and do manual therapy on top of that). I've tried about 5 different types of work within my current profession but haven't been able to find anything that worked with the CFS...
I spent a lot of time researching what field to move into (in terms of what I was interested in, jobs demands etc.) - fingers crossed I've found something that works, but actually getting a job in the field is the next challenge. I'm pretty lucky in that my cognitive symptoms are less than my physical ones, so if I can sit behind a desk I should (hopefully) be ok.
I spent a lot of time researching what field to move into (in terms of what I was interested in, jobs demands etc.) - fingers crossed I've found something that works, but actually getting a job in the field is the next challenge. I'm pretty lucky in that my cognitive symptoms are less than my physical ones, so if I can sit behind a desk I should (hopefully) be ok.
Murph
:)
- Messages
- 1,799
I work from home as a freelance journalist. I'm lucky enough to be mild and I used to be very mild and I worked at a newspaper for a few years which got me experience and connections. It's hard some days but I can work lying down so I manage.
Judee
Psalm 46:1-3
- Messages
- 4,494
- Location
- Great Lakes
My job at a call center evolved into work-at-home when the company wanted to hire more people but not expand their office space.
I had ME/CFS when I started and during the 16.5 years I worked there, it got increasingly worse. I never could work the 40 hours but I started at around 34 hours per week and went down to 30 when the company that bought us out said 30 is full time too.
Finally though, I had to go down to 20 hours per week, losing my health insurance and most other benefits, after getting an infection.
I worked that for about 4.5 months until my mom got a burst appendix and had to stay in the hospital for a week for surgery and recovery. Stress and pushing myself during that time made my ME/CFS go completely over the cliff. Once she was home I was putting in time offs left and right and praying that other employees would sign up for them which they did. (Thankfully, lots of new people wanted the extra hours.)
However, I finally realized, I couldn't work anymore. I wasn't taking the time off for her but because my reserves were completely empty.
Anyway, I have occassionally heard of other companies that let you do work-at-home customer service through the years. Probably some would involve a time of in office training though first but something to keep in mind if you are not completely housebound. Also customer service can be very stressful and if you get a company that doesn't train you well "flying solo" from home would probably be even more stressful.
I had ME/CFS when I started and during the 16.5 years I worked there, it got increasingly worse. I never could work the 40 hours but I started at around 34 hours per week and went down to 30 when the company that bought us out said 30 is full time too.
Finally though, I had to go down to 20 hours per week, losing my health insurance and most other benefits, after getting an infection.
I worked that for about 4.5 months until my mom got a burst appendix and had to stay in the hospital for a week for surgery and recovery. Stress and pushing myself during that time made my ME/CFS go completely over the cliff. Once she was home I was putting in time offs left and right and praying that other employees would sign up for them which they did. (Thankfully, lots of new people wanted the extra hours.)
However, I finally realized, I couldn't work anymore. I wasn't taking the time off for her but because my reserves were completely empty.
Anyway, I have occassionally heard of other companies that let you do work-at-home customer service through the years. Probably some would involve a time of in office training though first but something to keep in mind if you are not completely housebound. Also customer service can be very stressful and if you get a company that doesn't train you well "flying solo" from home would probably be even more stressful.
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@Rebarns
Wow.. I can't believe that you are working in retail.
Just imagining to stand a great part of my day feels like torture.
I hope that you can find a job that is more suited.
Yes, torture is exactly how I'd describe it!
And thanks, I search job sites pretty much every day and apply often! But I live just under London UK and so many people want jobs here making it hard to actually get one!