Would you be able to work part time?

[markielock]

Hi guys,

I've been recovering the last couple of years from my 'experiment' of working full time after completing University. Thankfully, since my base line of health has reached a sustainable standard: I've been able to find some part time jobs that amount to around 22 hours a week. I made sure they were suitable to my symptoms too: working as an IT support assistant at a University and opening and closing a local Church on Sundays. It's allowed me to move back out and be more independent.

It's still hard and a struggle; my quality of life and ability to do what I want to do is significantly effected. I have to make sure I manage every aspect of my life and plan ahead, e.g. cook in bulk on one day, meal plan etc... and it's never cut and dry and may only work 50% of the time. However, working part time instead of full time seems to be working despite going from doing very little to working has made my symptoms worse - This time, on part time hours, I don't seem to be going 'over the line' and then free falling into much, much worse health.

My question is: I've read a lot about others working full time with CFS and suffering immeasurably. I've been there myself and I simply couldn't physically and mentally keep it up: it was a living hell. Equally I read a lot about others who can't work anymore due to their symptoms (Is that based on the idea of working full time?).

How would you cope working part time?

For me it seems to be an answer, at least a temporary one, but I appreciate I am just a single person and that I can only afford to rent a room in another person's home, no savings etc... on this salary etc...

 

[AndyPandy]

@markielock I can't work at all - full time or part time. I was medically retired from full time work 4 years ago. I tried to continue at only a few hours a week before retirement but was too ill. I struggle with activities of daily living and often go without showers.

If I could work at all I would. I hope you can continue to manage part time work and wish you all the best.

Andy

 

[AndyPR]

How would you cope working part time?

Poorly, I tried it after giving up my full time job and in the end had to admit that even part time was too much for me.

As @AndyPandy says, if I could work I would, and I'm sure that most, if not all, PR members would say the same.

 

[Valentijn]

How would you cope working part time?

It simply wouldn't work. Due to the inconsistent and unpredictable nature of ME symptoms and flares, it's extremely unlikely I could stick to anything resembling a schedule. And a big limitation for people who don't/can't work is that we really can't travel at all, without substantial assistance. So showing up for 4 hours per day instead of 8 would still result in a crash from traveling, even if we could handle the actual work (with accommodations).

The other issue is limited energy reserves. I have to choose between taking a shower or being able to cook dinner. I simply cannot do both on the same day. For many, the energy going into work would mean that they could literally not attend to personal hygiene, meals, children, or much of anything else.

 

[Firefly_]

I could work part time...as a wet floor sign

 

[Old Bones]

And a big limitation for people who don't/can't work is that we really can't travel at all . . . I have to choose between taking a shower or being able to cook dinner. I simply cannot do both on the same day.

My limitations with respect to transportation are not quite so severe. But, I've definitely considered them as a contributor to not being able to work, even part-time. I still drive, but only during the less-busy times of day. Otherwise, due to my heightened sensitivity and perceptual problems, the other drivers are too fast, too close, and too aggressive. It's overwhelming, and exhausting. Regardless, it takes several hours after getting up before I'm alert enough to safely drive within my restricted "action radius". Public transit would be a nightmare -- standing up on a lurching train crammed among other commuters. I'd be ready for bed by the time I got to work. The final transportation choice, by bicycle (a method I previously used in the summer), is self-explanatory -- PEM.

@Valentijn So true about having to choose activities. Although I am able to do many individual activities, I can't handle them in the same time period, whether an hour, a day, or even a week or month. My priority changes throughout the year . . . preparing healthy food, keeping the house tidy (hardly ever!), researching my next medical intervention, writing Christmas cards, doing a hobby activity, etc. I can focus on only one thing at a time. It's not even a conscious decision to do so -- it just happens. So, if I were working, not only would I not be cooking, I wouldn't be eating.

 

[worldbackwards]

How would you cope working part time?

Working outside the home is a non-starter - my noise and temperature sensitivity would finish me off pretty quickly even if I were well enough to travel, which I'm not. Within the home, well, given that I can only do things for a short period of time before I have to stop and do something else, and also that my concentration is limited within that to pretty simple stuff (I find it difficult to shift focus repeatedly whilst doing a task), it's hard to think of a job that anyone would employ me for.

I suppose that if someone brought all the stuff round and then took it away again then I could put nuts and bolts into plastic bags four or five times a day for a bit, if I didn't do anything else non-essential with my hands and arms. That's my skill set. Possibly, as I can't say that I've tried it out. But I'm sure they have machines for that sort of thing.

I have no great fondness for the idea of work in itself - I got sick when I was quite young and I've had no jobs to miss apart from the drudgery that teenagers do - but I worry about not being able to support myself. I've been fortunate so far with family support and benefits, especially when I was really ill for a long time and could barely do anything, but it's impossible that this will last forever and it's frightening to think that I could left to starve and be helpless in the face of it.

Still, it's clear from the pioneering work of Professor White that such things would simply motivate me to recover. Praise be.

 

[Apple]

At no point in my illness have I been well enough to work part time. If I was a little better (maybe at your level) I would like to try some form of self employment (I have so many ideas! haha), but I wouldn't try working unless I was well enough for it not to have a large negative affect on my life.

What you said here:
"my quality of life and ability to do what I want to do is significantly affected" worries me a tad. I know you said that you're not going 'over the line' but It sounds a little bit like you are.

Quality of life is important. Please be careful and listen to your body.

 

[Ben H]

I worked full time for 2 1/2 years, while ill.

Looking back it was absolutely rediculous, and if I could, I would not have done that given the chance again. But hey, I didn't realise the nature or what I was dealing with. I've gradually declined over 5 years and gave up work I think 2 years ago this August.

Like many others I have to choose what to do now with my energy, shower, food etc.

At least it's a fuck you to the 'malingering' tag, so many of us try to work I guess, not that we need to justify it to anyone. But I wouldn't do it again.

Now I'm on disability, and I hate it. I wish more than anything I could work.

B

 

[Comet]

I have to work, but I am also mostly bed bound and only leave the house once or twice a week at most.

I had no choice but to reinvent myself and I now run my own (not very profitable) internet based business using a laptop while laying in bed.

It's very draining, but at least I can vary my work schedule according to my health.

 

[geraldt52]

Be aware that working part time, after having worked full time, can very significantly affect the process of and your chances of qualifying for Social Security Disability in the future. It may be used against you in ways you can't imagine. I did it to keep working, but I'd never have done it if I had known.

edit to add: I didn't see your were in the UK, so I don't have any idea if part time v full time might have the same affect on a claim of disability.

 

[Mij]

I'm unemployable. I'm doing very little this week just so that I can make it to my doctor appointment.

 

[TigerLilea]

I work part time from home but could never work at an outside job. I never know from day to day how I'm going to feel or how many hours I can put in. Fortunately my job is two weeks on two weeks off and I only work up to five hours each day. Some days I barely put in an hour.

As long as I get the completed paperwork to my client on time, I'm okay.

 

[Mary]

I worked full time for 2 1/2 years, while ill.

Looking back it was absolutely rediculous, and if I could, I would not have done that given the chance again. But hey, I didn't realise the nature or what I was dealing with. I've gradually declined over 5 years and gave up work I think 2 years ago this August.

Like many others I have to choose what to do now with my energy, shower, food etc.

At least it's a fuck you to the 'malingering' tag, so many of us try to work I guess, not that we need to justify it to anyone. But I wouldn't do it again.

Now I'm on disability, and I hate it. I wish more than anything I could work.

B

I did the same thing, kept working for 3 years after I first crashed. I don't know how I did it and realize in hindsight it was not a smart thing to do. I haven't worked since 2001, and it takes all I have to get my needs met, and that I manage, just barely, with nothing to spare. Like everyone else, I ration my energy very carefully, have to plan a couple of days in advance when I will wash my hair, etc.

 

[daisybell]

I gave up work several years ago, but don't get any benefits. Living on savings when in your 40s isn't my ideal....
I've recently accepted a casual job, which I'm hoping will give me lots of flexibility, and the hours are likely to be low - probably only 3 or 4 per week. That will bring in a little money - and hopefully not be too much for me to manage. If it all works out, it will help to stretch my savings out a little further.

 

[panckage]

I'm a substitue teacher and it works quite well. Lots of holidays and I can take off time whenever I need to. I can't do much outside of work, but I do enjoy my job and i can pay my bills.

This thread has already been done though. If you search you can see several pages of peoples response

 

[TiredSam]

Here's the last thread on this subject:

ME/CFS people working full-time (or close to)? What is life like for you?

 

[markielock]

Thanks ever so much for all the feedback guys!

At no point in my illness have I been well enough to work part time. If I was a little better (maybe at your level) I would like to try some form of self employment (I have so many ideas! haha), but I wouldn't try working unless I was well enough for it not to have a large negative affect on my life.

What you said here:
"my quality of life and ability to do what I want to do is significantly affected" worries me a tad. I know you said that you're not going 'over the line' but It sounds a little bit like you are.

Quality of life is important. Please be careful and listen to your body.

I do worry about going over the line. I am predisposed to being in denial over being ill with CFS (with nasty consequences) and I'm sure others are too. This is something I've got better at being aware over the years and I am practicing mindfulness every day. In terms of quality of life: I am always in pain and I have a persistent haze that makes me feel like I'm suffering from acute dementia. All of my symptoms are elevated because I am doing more; I am just resting outside of work. However, where I was living with my parents, was the perfect example of the middle of nowhere. Because of this, I equally didn't have the greatest quality of life there due to not having any independence or autonomy. Although my symptoms are elevated, I feel this is a better balance between being able to live my life and being ill (as @panckage said, I can pay my bills too! Damn student debt lol). I do have to be extremely careful because my mobility is very limited and it is very, very easy for me to become bed bound for months if I go too far.

I had a bit of an ulterior motive with this thread: I wanted to see if anyone else was having much joy with working part time vs full time (which is horrific and I wouldn't even wish on healthy people!). I am already starting to feel the effects of the delayed fatigue and it's making me low emotionally so felt it would be good to get some more perspectives.

And a big limitation for people who don't/can't work is that we really can't travel at all, without substantial assistance. So showing up for 4 hours per day instead of 8 would still result in a crash from traveling, even if we could handle the actual work (with accommodations).

I completely agree, when I worked full time the commute was horrific. Because I can't walk very far: this time I made sure I was right outside a bus route (approx 2 mins away). I also live on a hill so I make sure I'm only walking downhill to a bus stop when I leave for work. When I get home from work I make sure I get off a bit further up the hill so I can walk downhill again. I rely exclusively on busses, otherwise I'd simply not be able to get out without cauing massive detriment to my health.

I have to work, but I am also mostly bed bound and only leave the house once or twice a week at most.

I had no choice but to reinvent myself and I now run my own (not very profitable) internet based business using a laptop while laying in bed.

It's very draining, but at least I can vary my work schedule according to my health.

I'm trying to reinvent myself too. I needed what I currently have to pay my bills and have independence. I only see this as phase 1 though as I'd rather struggle on into creating a business that I can "work on" , instead of "work in". At least I can then work on my own terms, despite the struggles. I do wish your business all the best .

I worked full time for 2 1/2 years, while ill.

Looking back it was absolutely rediculous, and if I could, I would not have done that given the chance again. But hey, I didn't realise the nature or what I was dealing with. I've gradually declined over 5 years and gave up work I think 2 years ago this August.

Like many others I have to choose what to do now with my energy, shower, food etc.

At least it's a fuck you to the 'malingering' tag, so many of us try to work I guess, not that we need to justify it to anyone. But I wouldn't do it again.

Now I'm on disability, and I hate it. I wish more than anything I could work.

B

Of course, the biggest theme being expressed in this thread is being stretched too thin and having limited choices in what we can do in a day. I, like everyone, have these limitations too. I am lucky I can just about keep enough endurance each week to work part time to be independent, which I really need in my life: but I'm literally always keeping myself at my absolute limit and very close to the line, which of course isn't the greatest way to live. It's not the most ideal life for me, but it's better than it was - just got to keep working toward betterment... and not burn out in the process!

I really hate that we're basically conditioned to see those who can't work in the conventional sense of what's defined as 'work' these days as malingerers.

Thank you ever so much for expanding my perspective guys. I hope I can keep this up until I find a better option.

EDIT: thank you @TiredSam , it was that post which promtped me to start this one about part time. I'll have to have a deeper look into previous threads in this forum to find more opinions on part time work

 

[TiredSam]

I had a bit of an ulterior motive with this thread: I wanted to see if anyone else was having much joy with working part time vs full time (which is horrific and I wouldn't even wish on healthy people!).

I'm having quite a bit of joy working part time, and couldn't work full time. I think whether it's possible to work part-time or not depends on your level of illness. For me I have to stay in my energy envelope, so I keep cutting down what I do (also reducing / saying no to work, I've cut down everything else already) until I'm hardly symptomatic. That's fairly non-negotiable, I'd rather feel well on the sofa. I wouldn't take on more work if it meant me feeling ill more often (unless it was extremely well-paid and not too onerous).

I do appreciate that I'm only able to work 10-15 hours a week because a)I have a wife who has taken over everything else, cooking, cleaning, increasing her own paid work, b)I'm self-employed so I can decide when I work and how, and c) I was fairly well set up financially before ME hit so I can get by on working 1/3 of what I should be doing without having to worry about the bills. So I'm very fortunate in those respects, I'm not sure I could work or exist independently without those advantageous circumstances.

EDIT: thank you @TiredSam , it was that post which promtped me to start this one about part time. I'll have to have a deeper look into previous threads in this forum to find more opinions on part time work

That thread is a good read, I can recommend reading all of it if you're thinking about working. The views exchanged on that thread made me cut down my work still further and be more strict about pacing generally.

 

[markielock]

@TiredSam That's a really good way of putting it: working inside your energy evelope. I'm just about keeping in mine but staying so close to the edge is taxing in itself. I'm glad to hear you have that flexibility from being self employed too .