How many of you are able to work?

[lenin]

hi,

I was just wondering how many of you can actually work. Apparently some people are able to work. For me would be very hard at the moment as I depend totally on my family. Moving to another city to work would be impossible but I don’t lose hope that maybe this could happen in the near future

 

[Rebeccare]

I wonder if there are any good part-time working-from-home sort of jobs that might work for you. I am able to work about 2/3 of my hours from my bed--thank goodness for laptops! It's sometimes too much thinking, but most of the time I can manage it.

 

[Hufsamor]

I did work 30-40 % for many years after I got sick.
But the last two years I don't work at all.
The last half year I was even working from home, I always thought that would be my best option, something I had wanted for many years.

But it turned out the thinking was too much anyway...

 

[jesse's mom]

I was a hairdresser and salon owner for 27 years. By the end of that time I was a zombie and sold my salon in 2006. I went back to school for three years to be a therapist, and got spinal meningitis in the fall of 2011. I regained some health and was able to run my household and help a dear friend who had a massive stroke for a few years. I won my disability case in 2013, thank heavens! I am in a stage now of getting the Flu and long hospital stay, just last fall. I am in bed about 22 hours a day.
Now I get recurring bronchitis and my kidneys are affected as well. The autoimmune issues are wreaking havoc in my body. My brain is foggy, but BCAAs and fixing my gut with diet and probiotics is helpful for me. Magnesium and Vitamin D are starting to help with some issues as well.

I am writing now, it is doable from my bed.

The supplements are helping with some of my worst symptoms.

I hope we all find a way to be productive in our new normal!

 

[Moof]

I worked for 38 years with ME – although I was able to do very little else! No partner or children, and a very limited social life.

Luckily I had a fantastic job that I loved, and I worked with some amazing people. If it hadn't been such a good working life, I might not have been able to hang on in there for as long as I did. I was always able to manage my own time, which was hugely helpful; I could do the routine stuff when I was over-tired, and the more creative/challenging work when I'd got more energy.

I had to give up a couple of years back, when age started to come into the equation as well as ME. I should really have left sooner than I did, as it took me 18 months to get out of the relapse, but I'm in a much better position now.

I realise many folk with ME couldn't even contemplate working – I was just lucky to be somewhere between mild and moderate for most of the time.

 

[Seven7]

I work with a lot of flexibility and acomodationa and I can work from
Home a lot.

 

[taniaaust1]

It was a disability job program by centrelink which made me sign a contract to work 6hrs per week which caused me to crash even more down to almost where I am now. If I had not been expected to be part time working maybe I would of had another remission and not been where I am now which is quite severe.

IF I was still able to drive (which I cant as my driving is terrible due to my brain problems). I may of still been holding one of the very last jobs I was able to do which was a full time one.
I had a job looking after a quadruplegic guy in his own home and night shifts involved nothing more then feeding his fish, feeding him a snack which was just feeding him about 2-3 biscuits with tuna on them, getting up twice to get him drinks (I'd get his snack at same time) and changing his urinary bag once (I got on the job training to teach me how to do that, I have no nursing experience).

This was an 8-10 hr over night shift, so the rest of the time I could just watch tv with him, or sleep in a chair nearby and once he went to bed, I just slept too in a camp bed there while getting paid. This seriously was an ideal job for someone with ME who could not do much at all.

 

[Neunistiva]

I was just wondering how many of you can actually work.

75% - 80% of people with ME/CFS are unable to work.

 

[Seven7]

75% - 80% of people with ME/CFS are unable to work.

I wonder how percentage of us that can work do it from home or with accommodations.

 

[CreativeB]

I work full time, but like others have said- with a lot of flexibility, support and accommodation by my employer. I'm able to hold onto the job but come the weekend I need to rest. It doesn't take much to make the conditions worse and I end up spending holidays recovering. Fortunately I don't have children and I have a very supportive and understanding husband whodoesmost of the domestic chores

 

[pibee]

i did full time school (university but i had it in HS too), and even socialized a lot with ME, but missed university like 50% times... (which was mostly allowed, or i had to use all kinds of humiliating manipulations to not get into problems). I def wouldnt be able to keep 9-5 job,...mostly because my severe circadian sleep disorder, not fatigue... although of coure fatigue is problem too

 

[wonderoushope]

I just finished up a part-time job (2 days a week) for 6 months and work from home with an art business that is very flexible.

However, since finishing up my job I have noticed my health is going down-hill again. So I am not going to look for work until my symptoms settle. I think it didn't help that I tried antipsychotics for insomnia just around when I left, which made me crash as well. I think my body hung in until I left the job (it was stressful due to the fact my boss was very "intense" which stressed me out). I am getting fatigued again, joint pain and flu like symptoms.

 

[MartinK]

Work sometimes save my life and Im really happy from option, when Im able to work from my bed.
Bed table is really wonderfull thing!
I work like copywriter and social media marketing - and its amazing!
I can make money for the treatment and sometimes I give money for my parents to care for me.

I can not earn much, but I can live at least.

I slowly begin to write a book about all of this and make music from my bed....take keyboard and play...turn speakers on me and create some stuff!

I think only these things hold me over the water...I am thankful.

Another amazing thing is make "green tea" ritual on couch in comfort with fragrant sticks and crackers!

in the life you can always find something beautiful and positive....
Martin

 

[pamojja]

With the onset of mild ME I had to reduce to 50% part-time. That worked pretty well since regular 4 hrs a day was just under the 5 hours of mental work limit I had to get very severe PEM. With having to change to an irregular job - some days 6-7 hrs, or in the early morning without enough sleep - I entered a 4 year period of perpetual PEM and no more fun. Last year limited myself to a 50% part-time work in a homeless shelter. Basically 2 night-shifts a week, half of it usually asleep. And even getting interesting social contacts thereby, while getting paid just enough to survive. I do feel myself so fortunate, in the known how many can't do that little anymore..

 

[ahmo]

Unable to work from the moment I became ill.

 

[Learner1]

I work part time, from 10 to 25 hours a week. Sometimes at home, sometime in the doctors office. My hours are irregular. I try to make myself available when my boss needs me.

But, I prioritize my care regimen first, doctors appointments, careful exercise, taking lots of meds and supplements, IVIG, a 10 hour process every 2 weeks, plus recovery, and a 4 hour weekly IV at the naturopath's to get a "mito cocktail". And I keep a blanket in a drawer at work and go sleep in an empty office if I'm too tired to work.