Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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What kind of job does everyone have?

Discussion in 'Finances, Work, and Disability' started by ToxxicWishes71, Mar 29, 2018.

  1. ToxxicWishes71

    ToxxicWishes71

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    I'm 20 years old and has had chronic pain, fatigue, and multiple other symptoms since I was 12 years old. My first job was full-time, and I had to quit because of my illness. My second job was "part-time" yet seemed more like full-time, which I ended up being fired because my symptoms got in the way. Currently, I've been working part-time as a pizza delivery driver for about six months.

    Problem is, I literally only work three days out of the week and I am trying to move out in June with my best friend, my sister, and her son. But, I am totally freaking out. I am struggling to find a job because of my chronic pain and sleeping issues.

    So, what kind of job do you have, if any? Is it part-time or full-time? Is there a lot of strenuous work? Stressful? Or is it fairly simple? Etc...

    I really don't want to be unemployed. For one, I am not even diagnosed and dealing with that will be too difficult. And two, I just refuse to believe that I am at that point (although, it feels like I am sometimes...D: )

    Thank you!

    Toxxic
     
    alkt likes this.
  2. Runner5

    Runner5 Senior Member

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    PNW
    I went to college for a very long time so I wouldn't have to work a real job and then I had enough education to quietly work away at a desk at an office located in a library. At the moment I'm unable to work at all which is really scary. I tried to get disability but it was no-go. They said I could sell things online or otherwise use the Internet well enough to provide some income and that was enough to decline my application. I hate relying on my husband but he's been really good natured about it.

    I hope you find your answers Toxxic, it's a tough road, hope you find a cure and just get to move on with life without pain.
     
    alkt, L'engle, Tally and 2 others like this.
  3. wonderoushope

    wonderoushope Senior Member

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    I have my own art business selling art prints and I have just taken on 10 hours work doing admin. My art business work is very flexible in hours and has plenty of spare time. I will say my health has improved a lot the last 4 months, that's why I am picking up extra work. I took on the extra work, as I find it too stressful for me to deal with the fluctuating income each month with my own business, so a little extra stable cash I think will alleviate the anxiety (all adding to the improvement of my health).
     
  4. PatJ

    PatJ Forum Support Assistant

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    I used to be a computer programmer and web developer. I had to start working part time in 2005, and had to stop working entirely in 2007 due to brain fog and fatigue. I've never been able to work since. I rely on Social Assistance (Canada's version of welfare) to pay for food etc. I'm fortunate to have the assistance and am grateful for it.
     
    alkt, L'engle, mrquasar and 5 others like this.
  5. Dainty

    Dainty Senior Member

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    @ToxxicWishes71 That sounds so scary, and I understand. I got sick at 13 and severe at 16. I am currently 29 and was unable to work at all until recently (was reliant on caregiver for basic necessities). About 2 years ago I started doing odd jobs for friends and family, then 1 year ago I began housecleaning for other clients, too.

    My experience landed me a job at a very small Bed & Breakfast designed for the chemically sensitive and those recovering from severe chronic illness. I was the perfect fit! I worked there 3 days/week, and that was really the most my health could handle at the time. Just this January I had the chance to pick my perfect hours and I attempted 4 days a week. I recently told my boss i want to go back down to 3 as soon as that's possible!

    Problem is, they're short-staffed at the moment and I'm really good at what I do, not only in terms of cleaning but also in being able to identify problematic fragrances other employees can't. My MCS is an asset here! The place is very zen-like, and what helps is my brain doesn't really have to work all that much. My body still struggles to keep up with the physical demands. The job is usually not stressful, though it can trigger my PTSD or MCS reactions.

    I am also developing my own business becoming a Fragrance Free Guide to anyone who wishes to live fragrance free. It is difficult to develop your own business while also working a part time job and freelancing for other clients to make ends meet! I'm telling you, today was the pits. I had to go home early from work because my abdomen was acting up so rough I couldn't do my work, and had to cancel the client right after work, too. I came home hoping I could at least work on my business but felt so down. This is the second week in a row I missed Friday's part time job tasks and also the client. Can I make it? Will I make it?

    It's hard, yes. But we'll make it. :) Slowly.

    Have you seen my thread on the chatting gig? It isn't much, but I earn $50/week from it. It's helped me through many times when money was very tight.

    Find gigs that are gentle on you if you can.

    Wishing you all the best in your journey. *hugs*
     
    datadragon, pibee, Misfit Toy and 7 others like this.
  6. Butydoc

    Butydoc President

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    I use to be a Plastic Surgeon but now unable to work Ive become a part time grandfather. I would be a full time grandfather if my health permitted. I had to change how I perceived my self worth and adapt to my new reality. As time goes on, this becomes easier but never easy.

    Good luck with your journey Toxicwishes17.
     
    pibee, Misfit Toy, Binkie4 and 9 others like this.
  7. songbird1

    songbird1

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    I do part-time, onsite office administrative work. I have a flexible schedule where I can work my hours around my needs. It's not a forever job, but it's the most I can manage right now - and I am barely managing it, physically speaking. The hardest part for me is the physical demands of commuting and just managing fatigue each day. My ideal would be some type of low-stress work-from-home employment, where I'll have control over my physical environment.
     
    alkt, PatJ, Dainty and 1 other person like this.
  8. Intuition

    Intuition Dance with ME

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    Melbourne, Australia
    I had just finished my medical residency when I got sick (was couple of months into my first 'real' job). Im now living with my parents and thankfully they are happy to support me for now. When I see what my uni debt is I just cry, but I got no real assetts so not much they can do at the moment. Being currently bedbound, I constantly dream about the day I can return to work.
     
    alkt, Joh, Mel9 and 4 others like this.
  9. Murph

    Murph :)

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    I have a job I can do from the couch, via the computer and the occasional phone call. It's also fairly flexible so If I need a snoozle, I take one. I basically work for myself and I have a few clients.

    I know these sort of jobs are hard to find so I hesitate to say it's as simple as getting one. But if you can think of a way to achieve it, I recommend it. Even the commuting part of a real job is stressful enough without the work and the swivel chairs and the bosses.
     
    alkt, Mel9, Dainty and 1 other person like this.
  10. ratmom

    ratmom

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    @Runner5 WHAT THE?!?! That has to be the most disturbing thing I've read in a long time. What do they expect you to sell if you don't have money to buy stuff to sell? Most of us don't really have like $3k worth of household goods to sell a month.

    @ToxxicWishes71 A friend of mine who is housebound in Alaska (not due to illness - just literally lives in the Alaskan wilderness) has had loads of success getting part-time and full-time online jobs. I believe she recommended AngelList and general "Start-up job" locating websites to get her positions. I don't know how suitable they would be for CFS folks but it's a good resource for finding remote jobs that let you work from home. (My friend also did a webinar or something about working remotely - Her advice: When asked why you want a remote job, act like that's a coincidence and you're not specifically looking for a "remote" job. Apparently, telling them you want to work remotely never works in your favor, like you look lazy or something, but I don't know how this works for people with disabilities.)
     
    alkt, SickOfSickness and Neunistiva like this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    I became ill in 1989. I have never been able to work full time. Luckily though, I found that I have a talent for making jewelry. I was always creative and love art, but didn't find this out until I was 34. I started making jewelry and now have my own business working from home and doing events (juried) when I am able. For many years, I was doing really well. I am still working but not doing as well as I wish. I am just too sick to get out there like I used to, but I still make jewelry, I still sell it and I also have a niche of being able to repair jewelry and recreate pieces. I do custom designs for all occasions or necessities and I am not getting rich, but at least I can do something that makes me feel like I am participating in the world and it makes people happy.
     
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  12. Neunistiva

    Neunistiva Senior Member

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    I was pretty bad right from the start, before I finished my University degree. I've never been able to work a single day in my life. It's my biggest dream and the first thing I want to do when I get healthy. Go to work
     
    alkt, Joh, Mel9 and 2 others like this.
  13. pibee

    pibee Senior Member

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    I work all kinds of things for money that I can, reselling stuff, coworking with agencies as project manager (mostly online), giving math lessons, translating.

    Nothing that I would normally do if I was healthy. I picked my whole career etc from a POV of sick person, when I was 18, this is what bothers me.
    but in the end any school you finish is good, I realized that after changing 3x my 'major'... ..I don't regret it much, i just want to be healthy ASAP ...I mean, what I really want to do doesnt require school that much..but requires health... ... :grumpy::grumpy::grumpy::grumpy:
     
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  14. nettle_tea

    nettle_tea

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    I am a library assistant at a rare books library, although I'm on short term disability leave right now. I've been working 4 days a week for the last year, and I hope I can figure out a way to get back to that. It's the commute that's killing me - I can't drive to work because there's no parking close enough, and I can't walk well enough for public transit.

    I'm working on getting a wheelchair so I can get around again, and hoping that will allow me to keep my job. I am fairly sure I could work 20 hours a week, but I probably can't get away with dropping much below 28. Besides the commute, my job involves continuous light lifting (of books) for much of the day. So... we'll see.
     
    alkt likes this.
  15. place

    place Be Strong!

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    Office work that is flexible in hours and works on a school calendar
     
    alkt likes this.
  16. Pink

    Pink Senior Member

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    @Dainty that b&b sounds like a heavenly place to rest!

    Im a stay at home mom of 6 kids.
    I panic each day if heaven forbid something happens and my husband cannot work.

    I struggle every day and really most days I cant do much. I'm overcome w guilt that I need hired help and dh cooks, shops etc. I feel useless and hate that I'm stuck here
     
    alkt likes this.
  17. CreativeB

    CreativeB Senior Member

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    I guess I'm lucky as my symptoms are fairly mild. I work full time as a college lecturer (in HRM so I'm aware of employment rights). My employers are great and my direct line manager is really supportive. I have a lot of flexibility over how I manage my work, can come in late in the mornings and work from home one day a week.

    It's the end if the academic year ... I'm suffering right now and expect to crash next week when my holidays start :nervous: i will get 6 weeks holidays over the summer
     
    Pink likes this.

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