i miss work, would love to work again..anyone work and sick? how do you do it?

[hurtingallthetimet]

i really really really miss working....i loved it mostly to hlep my kids and it made me feel good...ive worked my whole life...and i felt i had nervous breakdown wehn had to quit...i worked as long as i could after becoming ill...

im not better than when i quit im actually worse in ways...but a part of my longs to try to work at least part time...i use to put 110% in any job...no matter if it was cleaning or office job...and i treid to do best job possible...im afraid though i wont be able to do it and fail...ive heard trying and failing is better than not trying at all...but along with becoming ill i also become more nervous, painic and anxiety attacks and im not sure i could handle failing...

im just not sure what job i could do...my memory problems and typing skills are gone for the most part...i cant be on feet...i have to lay down constantly between doing anything...just not sure what job if any out there for me and i coundt work many hours...is there such a job? i couldnt take medications which i need to live day to day because of pain, exhuastion, migranes anxietys....its all scary..im afraid id be a dud and miss alot of time...

anyone work? waht do you do if you dont mind my asking? i barely get out of bed not sure how id handle a job...but i miss working...missing helping kids...miss haviing somewhat a social life..

 

[Sparrow]

I really miss it too, but there's just no way I could handle it yet. When the daily activities of life are still enough to wipe me out or are beyond my capacity, I have to acknowledge that trying to work at all would be a huge mistake.

Keep in mind that being able to do something for one day, one time, is not the same as being able to do it day after day, or consistently. I say this with all the best intentions and support in the world (and obviously, you know your situation much better than I do!), I have to say that as an outside observer, I think you probably need more rest and recovery right now before you think about working, even if you could find that perfect job. Once shopping is easy again and you feel great from day to day, then think about a little working if you feel up to it.

I feel for you, though. I really miss it. It's a tough, tough thing to give up.

 

[SickOfSickness]

Maybe you can find something volunteering, and explain about needing breaks and to not be on your feet much and other specifics. Maybe the Big Brother/Sister program? I don't know a lot about it myself but I think you just spend time with the kid a few hours once a week. If you had one old enough, you could sit and do puzzles with them, help with their homework, talk, watch a movie, and maybe cook, or whatever you are able to do. Or do you have any friends where you could babysit their child for a couple hours? If you don't know about feeling okay for a scheduled time, then don't try it.

I think there must be some volunteer jobs out there where you can show up whenever you feel better, and leave when you have to. Nursing homes might. There is also going to shelters to play with the puppies and cats who are lonely. There might be facilities for disabled children that you could visit too. I know I've seen children's hospitals looking for people to just sit in the playroom and help entertain the kids. I can't remember if that was a paid or volunteer position. They were wanting a certain amount of hours a week, 10 or 20 I believe, but every hospital would be different, and they might be more flexible if you were working free. Also soup kitchens or organizations that are doing an event or holiday.

 

[kurt]

My philosophy is to let your desire to participate and be part of the work world be a motivator to find ways to improve your health. Trying to work when you are unable is a bad idea, just makes things worse because as you pointed out, there will be more failure and that can be psychologically damaging. Rather, I would make your work to find some self-help or medical or alternative medical help. That is what I did and it took years, but eventually I found some treatments that got me from mostly bedridden to now working part-time at home and being mobile again. For example, when I was very sick I could not drive, for about 7 years. But I used my time to find ways to treat my CFS. After finding some treatments that really do work, I am now able to drive again, short distances mostly but sometimes longer. And I only need to rest maybe once during an average day, can sit and work at a computer, talk on the phone, etc. Most of my paid work right now is computer-related, some technical writing. This is much lower level work than pre-CFS, I was a researcher, educator, and a software engineer. But it is better than laying in bed all the time. However, this is only possible because of finding effective treatments (mold avoidance, multi-B12 protocol, rehydration therapy, stress-reducing meditations, etc.).

 

[DaiWelsh]

I do work and earn enough to support my family but I am extremely lucky in my circumstances and even then it is HAAAARD. I am a web developer and had a dozen plus years experience behind me when I got ill (I was actually running my own development company at the time but had to wind that up after I got ill). After trying freelancing (I had done so successfully prior to employing staff) and an office job (lasted all of 10 days) I found a job advertised where I could work from home. I am now judged almost exclusively on my long term output (my employer is unaware of my illness) and if I have a few really bad days I can usually catch up over the next week or so. Even then I could not keep my employer happy if I wasn't highly experienced and skilled and I still have periods of really bad symptoms when my output drops too far and I just have to wing it until I am back on an even keel. I don't know if this helps you or not - it is possible for me to work but as I say I am very lucky and it is still very hard so if you do try something try to be realistic about what you can achieve - any kind of work at all with this illness is extremely hard.

I guess the key would be to try to find something that can be done ad-hoc, on my better days I can do 3-4 hrs work total, but on bad days even with absolute determination and only having to sit at my computer and type I just can't do a jot - I simply can't make my brain engage. That was what killed the freelance work - no client likes to be ignored for several days or even weeks. But if you don't have short term deadlines that could work, I just can't think of many such jobs, hopefully you can.

Good luck anyway, I feel for you, I miss being able to work effectively, if I couldn't work at all....

 

[ramakentesh]

Id love to work from home.
Ive worked for 12 years - 10 years in my current job and im quite good at what I do. I developed POTS about 8 1/2 years ago and in that time Ive had three years where ive really struggled. Ive found over time its just got harder and harder and its like im forever burning it at both ends. Im not sure what the future holds but I guess im trying to work for as long as I can before I just cant do it anymore.

 

[outofstep]

I have a few suggestions for you. Have you considered starting a shop on ebay or Etsy and selling your garage sale finds on there? There is also a company that offers short-term workers for whatever clients need-like it could as small as needing someone to put together an Ikea chair for their home office or a much bigger project-I'm not explaining it that well so here is their website (taskrabbit.com) I don't know if this specific co. is in your area but there do seem to be other similar companies popping up around the country so with a little research you can likely find one. And finally, Carrigon is the master of earning $ online via answering surveys, she has a thread about it but I can't locate it now-maybe you could message her for more info.

I know many people who have non-traditional jobs, including a dogwalker/watcher (for people not home during the day), a housesitter, there are things out there that sounds like you could manage it, especially if you work from home. Good luck!

 

[ramakentesh]

i guess eventually ill go down that road. offices suck anyway so i guess thats an upside. Honestly i wonder whether id be better mowing lawns than sitting all day there slowly getting dizzy and weak...

 

[hurtingallthetimet]

thanks for the suggestions...i know i should wait uintil im able to do a good job soemwhere...i know im not able to now but i just miss it so much..it helps to know others know how i feel...

its so hard to want to do anything...and not be able to becuase your sick...i miss going to movies with my kids and then out for dinner..that was fun

 

[Desdinova]

Up until recently I had understanding supervisors. My new supervisors both have family members with FM and IBS but think FM is all in your head & Stress and That IBS is Poor Diet, nonactive lifestyle, stress and anxiety "You need more Fiber and Exercise.". I try to strategically scheduled my vacation days and am lucky to have several co-workers on other shifts who look for overtime and can work my job to cover me if I have no vacation available.

It's getting a lot harder though work takes the majority of my energy. My personal life is now non existent, I have little family, no wife or kids and little in the way of real friends. House hold that always looks like a bomb hit it which drives me crazy since I am or rather I was a neat freak. Nothing like having no clean clothes to ware to work. Or being so tired you can't fix anything to eat or even to tired to eat . It's embarrassing having to ask your sister (who lives at the other end of the state) for help cleaning your home. At least I don't have to keep up with a yard anymore. I'm sure nothing I've said is news to most here.

 

[maryb]

What everyone else said........
Volunteer at a drop in centre no pressure to be anywhere at a particular time, home working at your own pace, e-bay etc, good idea......
I missed my job and colleagues so much, now realise it took about 4 years before I'd gone through a sort of grieving process for it/them, don't underestimate this process, just have to change your perceptions of life, accepting your limitations and see life/future in a different light.
My motivation is still to get well, I focus much of my time on shopping and cooking healthy meals. Not much but it keeps me busy. Hope you find something to fill the need in your life.

 

[taniaaust1]

anyone work? waht do you do if you dont mind my asking? i barely get out of bed not sure how id handle a job...but i miss working...missing helping kids...miss haviing somewhat a social life..

I was working full time (actually worked 56 hrs one week) but with quite bad ME at one point, I was able to do that cause I had the ideal job for a ME person come my way.

The job I got was taking care of a quadruplegic guy in which I could choose the days I worked and how much I worked. The job involved keeping him company and this guy when he was awake.... just tended to watch TV so I didnt even have to keep him occupied by talking to him.

I got paid for just being there (used to just lay down in a chair all day) and sleeping near him (a mattress was put on floor by his hospital bed) and getting him an occassional drink when he needed it eg getting him a cordial about 5 times a day, which I'd get myself a drink at the same time. I only had to change his urinal bag usually only once when there. I also fed his fish.

I unfortunately had to leave this job after 6 weeks and thou he was a quadruplegic, he was extremely verbally aggressive and cruel and the stress of that was impacting negatively on me... (he had some puppies he threatened to get his other carer to bash and kill and stuff like that).

I actually got that job after seeing it advertised in the newspaper and I had no medical training. The guys mother taught me how to change the urinary bags (and his feaces were managed in a once a day shower in which another helper came in to do but I assisted with but that was the only time the guy was ever moved).

So there definately is some strange jobs out there that most of us ME people could do.
.................................................................

My sister recently got paid some very good money for participating in a focus group ($30 per hour, which is very very good in Australia). She had to go to a local deli and buy a cake (which they reinbursed cost) and then she and her family eat it and then she had to go to a 2 hr group discussion and discuss it.
If I could still drive, I'd put my name down for participating in focus groups and trialing products etc

Ive tried to find volunteer work but everywhere wanted "reliable" people even for just 1-2 hrs per week, so I was knocked back for that when I said I couldnt always guarentee I would turn up and need to be able to give extremely short notice in advance. With ME I cant be reliable.

If you do ever find a part time job you think you can manage.. take care that it doesnt have chemicals involved even if you dont already have MCS. Many of us..including myself included have done part time work which involved being around chemicals and then developed MCS.

I was doing a very small amount of housecleaning when I was still working (only a few hours spread out over a week) and then started becoming sensitive to everything.

I have a ME/CFS friend and when she was unable to do full time teaching, she went to doing part time teacher relief work.. and her MCS seems to be triggered off by textas (she's got bad sensitivity to petrochemicals which started off from the textas at school, end result being she cant even go into a petrol station now.).

Anyway.. Im just saying if you do ever get a part time job take a lot of care of what kind of job you do as it could flare up new ME symptoms esp MCS

 

[SickOfSickness]

Good posts here.

We have to cut out so much from our lives, to leave energy for the necessities There are some things I don't want to cut out but I should. Finding more efficient ways to do things also may help. I would like to stop going out as often, and do more when I go out. It's a tough call. So much is not worth it, but some things are worthwhile if it makes us feel really good or relaxed, so doing a small favor for someone can be worth it, if you don't crash after.

We all help each other on this forum, so we are doing something.

 

[roxie60]

Boy can I relate. I am faced with returning to work tomorrow after being gone 12 weeks (cant believe how fast that went). I am slight better, no longer bed ridden, but still fighting many symps. Now I am adding anxiety since I still to now think my brain is functioning at the level that is required for my job (system programmer). I have received no support from co-workers over the years, rather they have sometimes been abusive,yelling at me that I'm not sick when I requested a cube that would allow me to be closer to the bathroom (I was having waterfall diarrhea without much warning), I was crushed at how harsh he was to me, I was so sick but I did try to stand up to him. I have used so much energy just doing the job I had not much left to take care of my home much less stand up to insensitive people at work. I am dreading going back, I fear being abused some more, and more so fear I am no longer able to perform at the level required. It is adding so much stress I have been eating emotionally the last week and making my symps worse because it is foods I'm suppose to stay away from (I was doing very well avoiding foods that are bad for me up until a week ago. I feel very down, I am 2.5 yrs from being able to retire w/ health care and I just dont feel I am going to be able to make it. What a let down after over 19 yrs on the job putting up with people attitudes and comments for years. I feel the Drs really dont know what to do and have no sense of urgency. My gp last week even acknowledged she did not get training in med school for treating someone like me, I was stunned and sad, not wonder it is such a battle for pwc's to get healthly, we use all our energy and finaices to try and understand what is going on because DRs have no accountability or training. If any of us who are still able to work had our performance appraisals that reflected a lack of urgency, lack of understanding, lack of diagnosing problems and determining solutions in a timely manner we would be fired. But somehow Drs and political services (that is an oxymoron if ever there was one) are not held to a performance standard for achieveing results. western medicine is a joke. thank goodness there is the internet so that we can help each other. and the govy wants to try and take that away or control it. I wonder how many are suffering in other countries who have no voice, controlled access to info. What a sad world...

Up until recently I had understanding supervisors. My new supervisors both have family members with FM and IBS but think FM is all in your head & Stress and That IBS is Poor Diet, nonactive lifestyle, stress and anxiety "You need more Fiber and Exercise.". I try to strategically scheduled my vacation days and am lucky to have several co-workers on other shifts who look for overtime and can work my job to cover me if I have no vacation available.

It's getting a lot harder though work takes the majority of my energy. My personal life is now non existent, I have little family, no wife or kids and little in the way of real friends. House hold that always looks like a bomb hit it which drives me crazy since I am or rather I was a neat freak. Nothing like having no clean clothes to ware to work. Or being so tired you can't fix anything to eat or even to tired to eat . It's embarrassing having to ask your sister (who lives at the other end of the state) for help cleaning your home. At least I don't have to keep up with a yard anymore. I'm sure nothing I've said is news to most here.

 

[roxie60]

In the last couple of weeks finally started getting test results that show my system is have serious issues and yet I am told to go back to work (well I have to go back becuase short term disability is up), I ahve been put on new supps that I'm afraid to take because I worry I will be physically/mentally (puts me in a stupor, mental fog) and would affect my ability to be at work. I cant really talk to anyone, family think I should just be able to over come (pull yourself up by your boot straps, I tell them I have for years and now the boot straps have broken), only one friend left, I tend to isolate becuase I can never know when symtoms are going to occur so Ive learned to just not participate, less stress of disappointing people. I'm not sure I know who I really am, Ive spent so many years just surviving, existing.....

 

[Desdinova]

You're told to go back to work because most PCP's don't know how too fit everything together. Theirs to many pieces and they can't figure out the puzzle thus they aren't able to see the big picture. And if the odd test comes back showing somethings there compared to all of the other negative, inconclusive or borderline tests then they'll want to give it time and retest.

If you're a blessed patient then you've got a doctor who not only sees it but understands the bigger picture even if their missing a piece or two. If you're a fortunate patient you've got a doctor who sees a piece or two of the puzzle and will treat them along with other symptoms that don't seem related to those diagnosis. If you're a lucky patient then you've got a doctor who will treat some of your symptoms but doesn't do much legwork ordering tests. If you're not lucky then you get a doctor who is cynical, dismissive, arrogant etc.

Doctors just don't know where to begin. As my PCP tried to tell me years ago "There's nothing with all those symptoms" "Here's a prescription for Zoloft and Viox." "Now Away With You (waved hand pointing towards the door in a dismissive fashion.)" OK so he didn't do that last part but that's how it felt since his stance was dismissive.

It's IMO a case of doctors trying to follow Occam's Razor and failing miserably because their interpretation of the principle is wrong. Occam's Razor urges one to pick amongst competing hypotheses the one that makes the fewest assumptions and offers the simplest explanation. But IMO many doctors misinterpret it as being, a simpler explanation is better than a more complex one. And well lets face it ME, FM and IBS are anything but simple.

You're not alone with family thinking you should be able to pull yourself up. My younger sister and myself both hear the phrase "BE HAPPY just BE HAPPY" form various people as if just think and act happily and your symptoms will magically dissipate. I to tend to isolate and I'm sure that some others here at this site tend to do this as well. Others pick up on this and equate it with a lack of interest in them or their lives. Having no idea of the physical hell those with our disorders endure. Especially when they do see us we look fine.

And I've often made the statement "That that this isn't living it's existing and existing isn't life." As for not being sure if you know who your are anymore. That's understandable it's hard to keep our illness from consuming our lives. Those of us who can keep it from doing so to any degree are fortunate and lucky.

 

[hurtingallthetimet]

sorry to hear about those struggling with same or similiar issue...it is hard, heartbreaking and stressful...

i miss working and cry about it...i loved providing for my kids, but it just got so hard i couldnt.. i have been working with the conselour over my guilt of not being able to work.the counselour made a remark that really sunk in last time,
that just taking care of my family is a full time job and all that i can do at the time...

i hadnt really thought of it like that for many reasons...i cant do as much as i use to....i cant do anything without pain medications/morphine and i have to rest in between so i feel i let them anyways...

i did work after becoming ill for as long as i could and i did try my best...but the counselour has helped me so much im still working on accepting being ill, not hating myself for it, and not feeling ashamed becasue i cant work...but as she said what i do is a full time job it is all i can do at the time...i have vented how i hate getting grocerys, going to doctor etc. it wears me out afterwards but at least i can still do a few things i know there are some that are bed bound....

it hard like ive said so many time and others have said so many times when you look so normal and thats all peopel can focus on...

 

[Misfit Toy]

I have the ideal job in many ways, I work from home and can create my own hours. I am a jewelry designer and somewhat successful. I made enough money in the spring to be ok this summer. The interesting part is, I am so lonely. I love that I can have a job and income but I am missing the social aspect. I only deal with women and usually at events that I do. It is great though to have some form of income. I am grateful. But, I am tired and not always able to even appreciate my circumstance because I am so brain fogged at times. I love what I do, but around Christmas, I get so sick and I have to take 4 months to recover. That's not fun!! Ideally, I wish I could work only here and there to keep my creativity alive and not worry about the $$, because working has really hurt my health. I have been so sick all this year and after a major event at an artisans gala or outdoor art fest, I am down for a week if not more.

I want to go work at Pier 1. I want to just check out and look at the furniture, but I am not able to. My hours wouldn't mesh with what they want and I would never make the $$ I am making now.

So even though I work, I really want to work too! Work, out of my home with a job that I see people and meet people, etc. Working at home isn't always the best. I am isolated.

 

[Mary Poppins]

I have worked on and off for years, with varying degrees of success. Some of the impetus for employment has been about financial necessity, some not so much.

Some days, I don't know how I do it - so the initial post asking 'how' was a very good one indeed. I know that in my 17 year work history, I've never been able to sustain long term employment without encountering a crash, often a very severe one. This is usually precipitated by a series of infection/virus-like illnesses.

The type of employment doesn't really seem to make a difference to the inevitable crash and burn. Sedentary, active, mix of both...it's typically all ended up the same way.

I've not really ever had the opportunity to do paid work from home before, however. I've often wondered whether I'd be more suited to that.

 

[Tammy]

I have been working part-time for the last 6 years (before that I couldn't have). Fortunately for me I am working for my mom in that I manage some apts she owns............so although it can be very challenging........I am not required to keep certain hours and if I'm having an exceptionally bad day........I know the boss isn't going to care if I'm at my place resting! There are many days I wish that I didn't have to work..........but then I wonder if the job helps keep me connected more to the outside world. Tammy