What would it take to get you working again, or stay working FT?

[Strawberry]

I would like input from almost anyone here, if possible. Meaning, I would like to hear from all levels of illness. Minus "a cure" or "a miracle." We all need a miracle...

**If you, like me, work but are having a very difficult time keeping from having to quit, what would it take to keep you working?

**If you have had to quit working, what would it take to get you back to work, even if part time?

For instance, I sit all day at work, so it is a low energy level job. But because I work I have no energy for shopping, so I have groceries delivered. I can't clean my house, so I probably should hire a maid once or twice a month (if only I could afford it). If I am hungry enough to make myself cook, I sleep extremely poorly and my legs burn for days from the extra effort. I should probably throw out the rarely used food out of my freezer and have someone cook meals for me and put them in my freezer (if I could afford it). But I'm not sure if even that is enough to keep me working.

I can't quit, I have a child that still depends on me financially. So I probably will work myself to death. Just trying to figure out if I have more options?

Also, if quitting your job let you heal drastically, I would love to hear those stories too. How did you keep from bankrupting? Okay, that one is a joke.

 

[taniaaust1]

Generally for many of us by the time we quit are work we are must worst from trying to work till we got to that point so then dont end up improving.

I had a remission one time when I was a single parent and not working but Im postive that remission was doing what I KNEW I had to do at the time to get better and improve, that basically was not doing anything for a long time and putting myself first. My own young child had to become my carer (she was aged only 9-10 years at time and had to do everything including taking care of her younger sister is disabled).. the alternative would of been I would of spent more years bedridden.

I would of never gone into remission and had 2-3 good years with my kids where they really had their mummy back. (it sucks having to put that kind of load onto a young child but knowing you are doing it for them in the long run).

Unfortunately when I caught something, like a common cold virus going around and got this illness back, I was in a different situation.. my children had grown up... though once again I attempted to try to work while sick, this time being pushed by our dole office who made me work part time when I shouldnt have been, I knew from my past that when I crash its rest I need. So with working, I just crashed more upon that first crash, till I couldnt even work 6 hours a week.

They forced me to try working while I was trying to get a disability pension which would of given me a chance at that point rest up properly and go into remission again.

I truely believe at that point that I could of recovered again if I'd been given the opportunity to do so instead of being treated by various agencies as if I was just a lazy person rather then a truely sick person.

Cause i havent been able to restrict things to the level my body needs.. now I cant even care for myself and require support services and I dont even know if I can recover again from this level. There is no way I could possibly get back to work at all with my current level of health even if everything was done for me. I cant even leave my house unless someone is with me to push my wheelchair.

 

[GhostGum]

After many years of progress I was able to start 9-12 hours of casual work last year, physical work helping fit blinds, shutters, awnings ect. I keep progressing and am likely capable of more hours but I am quite apathetic to it because away from work I am totally focused of full rehab and recovery so I can build a foundation for the rest of my life.

I even ride my bike to work, down the street to run errands and even started some body surfing in the ocean recently. To most this might seem like I am incredibly functional but none of it still runs properly and I still do not pull up properly or sleep properly.

As a man and outdoors person, still being in my early 30's I wont accept anything other than my full lifestyle back. Seems a little crazy and selfish, but I think that resolve and drive is also what I need; it is fundamental to the human condition really.

Have seen discussed before as well that people are more likely to recover if they have been able to completely rest with no obligations over the years; this seems very true in my case. I am not sure how others manage with families or even just living alone, my respect to those who do, or try.

Sorry that my answer is not helpful in anyway to you op

 

[Strawberry]

Thank you @taniaaust1 and @GhostGum

So a miracle or a cure truly is what we all need?

 

[taniaaust1]

For instance, I sit all day at work, so it is a low energy level job. But because I work I have no energy for shopping, so I have groceries delivered. I can't clean my house, so I probably should hire a maid once or twice a month (if only I could afford it). If I am hungry enough to make myself cook, I sleep extremely poorly and my legs burn for days from the extra effort.

the best thing you probably could do for yourself is find yourself a good dr who is willing to support that you cant continue working full time as it is causing you not to be able to look after yourself or your child well (causing you not to be able to cook, clean, shower much or whatever) and maybe try to go onto a disability pension as you shouldnt be working full time. Its further damaging your health.

Only one who truely understands your current situation will probably still support getting you onto disability while you are still in work (or do you have sickness payments where you are. I know after a certain amount of time on sickness benefits that people can end up on disability pensions).

 

[SickOfSickness]

It's really sad you and many others are in that situation.

I can only work when it's very flexible, sedentary, from home, and not requiring speaking. I don't think I could do full-time even with those.

One possible idea is buying healthy frozen meals. If you get a cheaper brand, or get them on sale or with coupons, they might not cost much more. You could also save if assemble your own frozen meal. For example, you buy bags of frozen vegetables, a bag of frozen chicken breasts, and add some gravy from a can or jar.

I had to use plastic cutlery, plastic cups, paper plates, and paper bowls a lot for a while.

Also showering less often helps me save some energy. At first your scalp is used to the daily cleaning, but then it starts producing less oil.

 

[Valentijn]

Also showering less often helps me save some energy. At first your scalp is used to the daily cleaning, but then it starts producing less oil.

I'm good for 5 days, and start feeling greasy after 6, and smelling a bit rancid after 7-8. I usually take a sit-down shower every 6 days. Any longer than that, and we use the inflatable hair washing basin.

 

[Invisible Woman]

I was unwell for a few months before I sought help. Then there were further delays waiting and seeing and referring to a specialist and ruling out a few things. I tried to carry on working and no one told me not to at first. After about 8 months I just crashed completely and have been unable to work or do much of anything else ever since. Even in the early days I would do what I could when I could - managing too close to the envelope with hindsight.

Being told to rest - and taught what proper rest means - right from the start may have made a difference. Taking a few months off work and then maybe trying to build back to part time work after that may have helped.

Good education about the condition and being realistic would have helped enormously. Unfortunately, most of us only experience this with hindsight.

Sorry - no easy answers.

 

[hellytheelephant]

@Strawberry it would be interesting to know how many folks on PR have pushed themselves to work long after their body was telling them it could not continue. This was my case- and it is a big regret.

When I first had ME badly in the 90's I worked from home for a while then it was impossible to work- I could not have got shoes on my feet and stood in a lit bathroom let alone gone out of the house. I swore to myself I would NEVER overdo it again if only I could have my health back... I did get considerably better, but I might have looked fine to others but was still essentially not 100% well....

Life conspired to me splitting with my partner and I struggled to pay rent and work full time....forward a decade from then and I am now functioning at @25% of normal.

I haven't worked FT since 2010, or PT since 2013. I was initially beyond upset at not being able to work or train for the career I wanted. Now I have come to this conclusion:energy is like a pie you are given. Yes, you can save the slices you might have used once for daily showering to do something else, but the problem is that the pie is TOO SMALL!
Pacing can help you choose what to use those pie slices for, but in the case of anyone with ME the pie is always going to be tinnier than the things you want/need to do.

Don't buy into the BS that if only you tried hard enough you would find the way to do what other people do.
I believe you need radical kindness to yourself to start to heal. It is a serious life- altering illness and it sounds as if you have made every 'economy' you can as far as pacing goes.

sorry...probably not very helpful -I hope that doesn't sound too gloomy.!

 

[Mel9]

@Strawberry it would be interesting to know how many folks on PR have pushed themselves to work long after their body was telling them it could not continue. This was my case- and it is a big regret.

When I first had ME badly in the 90's I worked from home for a while then it was impossible to work- I could not have got shoes on my feet and stood in a lit bathroom let alone gone out of the house. I swore to myself I would NEVER overdo it again if only I could have my health back... I did get considerably better, but I might have looked fine to others but was still essentially not 100% well....

Life conspired to me splitting with my partner and I struggled to pay rent and work full time....forward a decade from then and I am now functioning at @25% of normal.

I haven't worked FT since 2010, or PT since 2013. I was initially beyond upset at not being able to work or train for the career I wanted. Now I have come to this conclusion:energy is like a pie you are given. Yes, you can save the slices you might have used once for daily showering to do something else, but the problem is that the pie is TOO SMALL!
Pacing can help you choose what to use those pie slices for, but in the case of anyone with ME the pie is always going to be tinnier than the things you want/need to do.

Don't buy into the BS that if only you tried hard enough you would find the way to do what other people do.
I believe you need radical kindness to yourself to start to heal. It is a serious life- altering illness and it sounds as if you have made every 'economy' you can as far as pacing goes.

sorry...probably not very helpful -I hope that doesn't sound too gloomy.!

Yes, radical kindness to yourself is essential.
No more thinking 'i should try harder'!

 

[Strawberry]

Ugh, you guys are all killing me! You are making me cry at work. But I know you all care, so its good.

Did you learn how to quit trying too hard? Or did you just walk the same path to destruction I am? No, make that run. I am running 100 miles per hour into a brick wall, but I don't know how to quit working. I can't handle housebound. It is hard to get to work and home, but I do less to equal here than at home. I try to justify to myself that its better for me....

Yes, I want a bigger pie.

 

[SickOfSickness]

The first years I was sick, nobody believed me, so I had to push myself hard to keep up. Then I pushed myself hard because I didn't think it could make me worse permanently, but I knew I was going to crash within a few years.

It took many years to learn to stay in the energy envelope. I hear that from everyone. It's hard to convince yourself to do less, especially when PEM is delayed.

Even now, sometimes I don't stay in it. I feel like it's worth pushing myself occasionally, and I'm trying to use supplements to lessen the PEM.

Most people waste a lot of time and energy. At least we can avoid that.

Do you have good doctors? I think you should plan for having to apply for SSDI or SSI someday.

 

[hellytheelephant]

@Strawberry We ALL want a bigger pie! This forum should be renamed the Pie Rustlers.
Just go gentle on yourself...no one is telling you what to do- only you know what is right for you. That's one of the great things about PR, is that there are many shades of experience and opinion here.and M.E is different for everyone.

You don't say how long you've been ill, but for many of us who are now housebound/bedbound it is a big source of regret that we did not slow down earlier.....

 

[SnappingTurtle]

I believe you need radical kindness to yourself to start to heal.

I like this concept and need to take this to heart.