Do you work full-time?

[simplelife]

I would like to hear from anyone who is able to hold down a full-time job. How do you do it? Did you tell your employer about fibro? What about applying for new full-time jobs? How do you manage the harder days and still work a full day? And would you be able to do it if you lived alone?

I ask because I want to know what’s possible and realistic for me. I was diagnosed with fibro over a year ago and I’m still learning to manage it. So far, I have nowhere near 8 hours/day of productivity in me! (before this, I was a SAHM with no boss--or paycheck; now I'm a single mom running out of money).

I appreciate your insights. Thanks!

 

[JayCS]

Hi simplelife... it'll be so hard to compare, cos it depends on your severity & type of fibro.
I can hear your pressure from both sides: not much money or time, but also not much "productivity".

So I'll venture a kind of answer altho I don't directly feel asked , but maybe some of it's useful...

I was working full-time 3 years ago, a challenging job, 45h+/wk.
When my fibro full flare was beginning to crash in, I told my employer right from the start, before it hit, before diagnosis.
After long sick leave trying all the time actively to get as well as I could, I had to break off aiming slowly at full working hours, so applied for the 3 kinds of disability available here, and had to negotiate various things I needed with my bosses, several times, until the message got thru, e.g. that I can't work before 9:30 at the very earliest.
Working only a few hours every day for me is better for not overdoing it than doing all my hours in a few long days and having longer time to recover - I wouldn't recover in time and I'd have my severe Ache every day all day.
What I needed changed a bit, whilst finding more and more things to help. So for me it was important to find out exactly what I need and adapt as much as I could and ask for as much as I could.
I would be able to work a lot more if it were online and without stress at home, without mask.
That's what I do now, after a 2nd major condition, MCAS, kicked me completely out of being able to commute to work.
And that's what I'd do if I had to change jobs, whether self-employed or not.

 

[sunkacola]

I have lived without other human beings in the house most of my life, although always with animal companions so I don't tend to say I am alone.
I worked outside the house all of that time. When I started having the pain and fatigue of fibromyalgia I kept working and after it was diagnosed I kept working.
There was no choice. There was no one else who would buy the dog food or pay the mortgage. You just do what you have to.
The last 10 years I was working I had my own business, which gave me a bit of flexibility, but was also very demanding work both physically and mentally/emotionally. There were rare days when I would call a client and postpone an appointment but the vast majority of the time I just worked anyway and masked how I was feeling. Acting as if everything was fine is something I had a lot of experience with starting early in my life.

I retired a couple of years before I thought I would, but it was not because I couldn't keep working. Rather, I realized that I could keep working until my body really gave out....and then I wouldn't be able to do the things I like to do for fun that involve physical activity. Or, I could stop a bit earlier and maybe still have a bunch of years of being able to do what I like to do.

Was that a good strategy? Yes, because I think my body was happy to stop. But I don't know if it made much difference in how I feel.

My point is that if you need to do something, whether it is take care of a child or earn a living or whatever it is, you have to keep doing it whether or not you have fibromyalgia or anything else you might have, so you just do it. There's no "how" to it....you just do it.

Someone I knew who has 5 young children lost her husband in an accident. He had been the sole breadwinner. So how on earth, in her grief and loss of income, did she continue to manage and take care of 5 children, financially and otherwise? She just did. She had to, so she did. And, when asked she will say that it was having that responsibility and need to meet it daily that, more than anything else, helped her to get through those first couple of years and keep on living.

What is possible and realistic for any one person is of course very individual. But I firmly believe that having to meet responsibilities and carry on with life is one thing that can help immeasurably with learning to manage fibro or any other similar condition. It will make it necessary for you to get out of the house, to eat well and get some exercise and do all of the other things that are helpful in managing it, because you will have to do those things in order to keep on meeting those responsibilities.

I sometimes think that people who stop working or who don't have to work or don't have other responsibilities may be less likely to take seriously and continue with all of the things that are necessary in order to manage the condition the best they can because the absolute requirement is not there to make them do it. Just a theory of mine.

I also think that we can do more than we think we can. It is easy to think we cannot do something if we don't really have to do it. If you have to, then there is no option for thinking you cannot, so you don't defeat yourself with that thinking.

I personally never told people that I had fibro. I didn't tell them when I was in pain. It would only have made it worse for me if I had. I also felt that I did not owe anyone an explanation for why I had to call in sick or postpone an appointment, and just saying I did not feel well was enough.

While doing so definitely means you have to be dedicated to taking the right kind of care of yourself, if you need to then you will do what you need to do and you will probably find that you can do more than you think.

 

[JayCS]

I sometimes think that people who stop working or who don't have to work or don't have other responsibilities may be less likely to take seriously and continue with all of the things that are necessary in order to manage the condition the best they can because the absolute requirement is not there to make them do it. Just a theory of mine.

I know anyone, incl. you, can see that this theory doesn't apply to me one bit. Unless you really mean "may be less likely".

I also think that we can do more than we think we can. It is easy to think we cannot do something if we don't really have to do it. If you have to, then there is no option for thinking you cannot, so you don't defeat yourself with that thinking.
I personally never told people that I had fibro. I didn't tell them when I was in pain. It would only have made it worse for me if I had. I also felt that I did not owe anyone an explanation for why I had to call in sick or postpone an appointment, and just saying I did not feel well was enough.
While doing so definitely means you have to be dedicated to taking the right kind of care of yourself, if you need to then you will do what you need to do and you will probably find that you can do more than you think.

The response that as in your case more work was possible with appropriate self-care is a fitting answer to the request. As long as the condition isn't too severe, which maybe it isn't? We don't know.

Encouraging people to do as much as they can about their condition and grow with their responsibilities is important, I agree.
However I've read more of fibromites doing too much, overdoing it, not able to let go, not able to pace and suffering much too much and then crashing big time. I only/do know one example of a person who admitted that they don't work on it much, because they no longer needed to. So the theory comes across as a bit of suggestion / judging those that wouldn't admit it. And in the context of the whole opinion "I also think that we can do more than we think we can" comes across as people like me who can hardly work being .... sort of lazy. I asked my wife about her opinion on this and she said that in her experience there may be a few very difficult people (whom she works with btw) who take an easy way out, but I'm by far not the only one she knows who always think they can do more than they actually can. When I asked her what she sees happening if I forced myself to work more she rolled her eyes and said: That's probably exactly what's got you in the mess you're now in. Agreed she also says I didn't self-care enough, but what she means with that specifically is....: working etc. a lot less. She's still always on at me that I'm still doing too much. So saying if "we" self-care more "we" can necessarily also work more will apply in some cases, but I hesitate to agree that it's a majority. I don't think it's something that can be generalized. I also don't want to generalize, but am saying it's difficult or even impossible to judge and very necessary to take the kind of person(ality) into account.

In our experience (at least here) there is quite some pressure in ourselves and in society to do more than we are able to. And encouraging ambitiousness is one thing, but this pressure can lead to more suffering than is necessary, whether social pressure, anxiety or guilty feelings etc. Maybe it's different where you are, but maybe it's just that this stance works for a few people, worsens for others.

Also it seems to me to contradict what we all usually say that pacing, sweet spots and limits are vitally important and also difficult to keep to, whilst pushing thru the pain is the worst we can do.

So I prefer to encourage and hear people encourage that dedicated self-care can increase and make sustainable what we can do. Which will in the case of a single mom mean some chaos management, asking for help, simplifying everything, lowering certain expectations, looking for quality time, prioritizing, learning to live well with less etc. And not just do it cos you have to. Misunderstood, that can break bodies and relationships/hearts.

But maybe I've just misunderstood something here myself....

 

[fimi]

I sometimes think that people who stop working or who don't have to work or don't have other responsibilities may be less likely to take seriously

I would have to disagree - in my opinion most people with fibro take their condition very seriously - working or not.

But I firmly believe that having to meet responsibilities and carry on with life is one thing that can help immeasurably with learning to manage fibro or any other similar condition.

I would say it's the other way around - most have to learn to accept their illness and manage their condition so they are able to meet their responsibilities and carry on with life as best they can - which for some, can be incredibly difficult and overwhelming.

 

[cookiebaker]

I sometimes think that people who stop working or who don't have to work or don't have other responsibilities may be less likely to take seriously and continue with all of the things that are necessary in order to manage the condition the best they can because the absolute requirement is not there to make them do it. Just a theory of mine.

to me, this is a bit of a judgemental statement..
I do realize that it is your opinion, and we are all entitled to those.. but, unless you are actually living with that person, you have no idea what is happening with that person. Yes, there may be certain people that do fit that statement, but not all people who chose to stop working do.

I do not consider myself to be a "lazy" person at all.. and used to enjoy doing a lot of different things, most of which involved physical activity.. yard work - we have 2.5 acres that needs looking after, working on our 120 yr old house - partner and i completely insulated and re-sided this old 2 story house by ourselves and have made foundation repairs ourselves, keeping up with maintenance and repairs on my vehicle - i used to never take my car to a shop & pay for things i could do myself, and i also enjoyed more recreational activities like bicycle riding, walking/hiking in the woods, etc. So yeah.. used to be quite active physically, because things needed to get done and one simply chose to ignore the pain, or just push through it.

When covid hit and the lock-downs started, i chose to stay home because of severe COPD - catching covid could literally have killed me very quickly due to that "underlying health issue". At the time, that was the right choice for me. The decision was made after discussion with my long time partner, and could we handle me not working for the duration of the pandemic (who knew it would just keep going like it has)

When I was still working, I was going to a chiropractor (a very good one) at least once a week to try to keep the lower back/SI joints happy enough that I could keep pushing through. I am kind of stubborn in that respect.. its just a "little" achy, take some Advil or Aleve and just keep on going, because you have to/are expected to.. did not matter that neither one actually provided any real relief, and by the end of the work day i just wanted to cry from all the pain.. but i was still expected to go home and make dinner, too, and all the other usual things.. feed the dog/cat, dishes, etc.

Now.. after making that choice to stay home in late March 2020, and not forcing myself to just "keep doing it" anymore (which i had been doing for a long time, btw) within a couple of months (by June 2020) my body literally fell apart on me.. I was not just sitting on the couch eating bonbons, either, I still did all the usual things around the house, but i was not forcing myself to stand all day, or lift heavy things anymore. I also stopped going to the chiropractor... and basically became a bit of a hermit.. refusing to go anywhere beyond my yard.. living in the country, I could at least go outside without major panic attacks. (the area i live in became an extreme hotspot for community spread at the start of all this, so me going anywhere was a major thing)
It got to where I could barely stand for 10-15 mins at a time before extreme pain in my lower back took over and forced me to sit down before i fell down.. sleep became an even bigger issue than it was before - before i was "sleeping" due to just simple exhaustion, now, the pain was/is enough to either prevent me from sleeping at all, or causing me to fully wake up several times during the night change positions..

Forcing myself to keep going for all those years has actually done me greater harm in the long term. I am slowly trying to come back out of that by small increments. A little bit here, a little bit there.. being mindful of my current limitations and what i can handle without causing further harm, yet still trying to improve things. Some days walking to the end of my drive (about 200ft long) is not a huge problem - i do use either a cane or walking stick for anything more than say 20-25 ft - but on other days it seems like an impossibility.

So, just a reminder that everyone is different, and how each individual is affected is different.

Many of us DO just push through because we are expected to - either by ourselves () or by others - bills to pay, food to put on the table, etc.. You do what you [think you] have to do to get by, even if it means causing more harm in the long run..

 

[Cutiegirl]

I am newly diagnosed (June, 2022) and I teach full time in an elementary school and carry a partial load at our local college. The goal is to retire early in a few years in elementary and move over to teaching online courses at the college. Organization and lots of planning helps. I have to write everything down. Elimination diet has helped immensely with inflammation. I have learned that milk causes flair ups and gluten hurts my gut. Trying sugar next to see what it will do to my body. Yoga first thing in the morning. Hot bath next. Lots of supplements. No meds except amitryptaline (30mg) and 3 mg melatonin at bedtime. Flair ups usually means tylenol 3....but because of my special diet it has been too bad lately. No crash yet. Fingers crossed!

 

[sunkacola]

I know anyone, incl. you, can see that this theory doesn't apply to me one bit. Unless you really mean "may be less likely".

Of course, which is why I said "MAY be less likely".....I wouldn't have said that if I did not mean that. . Also, I did state it was only a theory of mine. All of which means I do not present it as a statement of fact.

So the theory comes across as a bit of suggestion / judging those that wouldn't admit it. And in the context of the whole opinion "I also think that we can do more than we think we can" comes across as people like me who can hardly work being .... sort of lazy.

Not at all. I would never call another person I have not even met "lazy", and would be unlikely to call someone I knew that, either, unless I knew a whole lot about their life. Ditto with judging people. That is not what I am doing.
"We can do more than we think we can" is actually a statement that applies to most of us, whether or not we have fibro or any other condition, and it applies to me as well. This is proven out over and over with people who discover that they are capable of things they would not have given themselves credit for being able to do, regardless of whether they are perfectly healthy or have a health condition. It was meant as a general statement and as such it is valid. It may apply to not doing all one can with self-care, or with working on having a beneficial outlook, or destressing one's life.

I think that if anyone read some of my previous posts they would realize that I have never suggested to people that they push themselves past what they could do without causing worse symptoms or fatigue, or try to ignore the pain and keep going. You, Jay, have read a lot of my posts and know this.

Maybe it's different where you are, but maybe it's just that this stance works for a few people, worsens for others.

No need to say "maybe it's different where you are" ( which comes across a bit snarky) because you know it is not. And, again, I was not saying that anything applies to everyone. Again, having read a lot of my posts you know that this is not what I would ever say. I make a point of letting people know that there is nothing that works the same for everyone.

But maybe I've just misunderstood something here myself....

Yes, I would say you have, but thanks for the opportunity to clarify what I do mean.

 

[sunkacola]

to me, this is a bit of a judgemental statement..
I do realize that it is your opinion, and we are all entitled to those.. but, unless you are actually living with that person, you have no idea what is happening with that person. Yes, there may be certain people that do fit that statement, but not all people who chose to stop working do.

Again, I am not being judgmental. Just stating that most of us (and, again, I include myself) can do more than we think we can do. And this doesn't apply just to working.

I do not consider myself to be a "lazy" person at all..

Really, I do not understand why you and Jay are using the word "lazy". I did not use that word and actually never would.

If what I wrote came across poorly to you, that is regrettable. But there is not a need for anyone to take it personally or to jump to the conclusion that I was being judgmental. Again, if you have read my posts you know I do not tend to be that way.

So, just a reminder that everyone is different, and how each individual is affected is different.

This is something that I tell every newcomer and repeat often in my posts. No need to remind me of that.

Many of us DO just push through because we are expected to - either by ourselves () or by others - bills to pay, food to put on the table, etc.. You do what you [think you] have to do to get by, even if it means causing more harm in the long run..

Perhaps I should have said "Many of us can do more than we think we can", but I think it applies to everyone, just not always in the same way.
A person, for instance, who is pushing him/herself too hard could do more on taking good care of their body, putting themselves first some of the time, and on reducing stress in their life.

 

[sunkacola]

I would have to disagree - in my opinion most people with fibro take their condition very seriously - working or not.

I did not say not taking their condition seriously.
I said: "may be less likely to take seriously and continue with all of the things that are necessary in order to manage the condition the best they can " which is very different. What that means is that if a person has to, they may be more likely to take self-care seriously.
Please note again, I said "may".

I would say it's the other way around - most have to learn to accept their illness and manage their condition so they are able to meet their responsibilities and carry on with life as best they can - which for some, can be incredibly difficult and overwhelming.

Actually, that is exactly what I was saying.

You say that many people manage their condition so that they can meet responsibilities.
I said: "But I firmly believe that having to meet responsibilities and carry on with life is one thing that can help immeasurably with learning to manage fibro or any other similar condition."
In other words, having those responsibilities to meet may make it more likely that a person will learn to manage their condition so that they can meet those responsibilities. We are saying the same thing.

 

[fimi]

Still not fully understanding your point but thanks for your explanation sunkacola

 

[Auriel]

Still not fully understanding your point but thanks for your explanation sunkacola

Aw fimi your so cute

 

[JayCS]

thanks for the opportunity to clarify what I do mean.

And thank you for clarifying like I was sure you would be able to. As you say, I know very well it's not what you usually say and - as I said - to me wording and the overall context and selection comes over one-sided and contradictory to your actual opinion to me, but as we can see not just to me. But everything's fine now it that's clarified.

Coming back to simplelife's situation, I think it can help people in that situation to illustrate how we can to a certain extent rise to the occasion / responsibilities like you have done, but as I ended my post it can also very much help to show the many possibilities we have to ease the occasions. And as we're all different and don't know who's on the other end (not just simplelife, but others reading this thread), I think it's important to keep a balance between "doing ourselves" and "getting help", between "being a bit harder on us" and "being easier on us". That also helps to avoid misunderstandings.
If someone really comes across as keeping under their possibilities then the balance isn't that necessary. On one of my other forums there are quite a few people who'd need your post rubbed all over them - "if it'd help" as my wife would say. But honestly I there know it'd be such a lost cause that I only do that very carefully, if at all, bedded in tips how to make things easier. Needless to say I myself get much less out of that sort of interaction than here....

 

[Auriel]

Clarifications are awesome they can make a world of difference ️ ️

 

[cookiebaker]

@sunkacola - i guess i owe you an apology.. because i totally misread AND misunderstood what you were saying. (can i blame this on fibro fog? lol no, not really.. ) what i though was being said was just not something i expected to see from you..
it can be hard to really understand what a person means when one cannot see that person, read the body language, hear the tone of voice, etc., so yeah, sometimes things can be, and often are, misunderstood.

Really, I do not understand why you and Jay are using the word "lazy". I did not use that word and actually never would.

it kind of came across as being implied... sorry...

Taking care of myself, and my needs is something I am still learning to do.. "self care"?? what's that? it was always about someone else in the past.. partner, kids, pets, parents, friends, work.. so taking time out for me, and my needs was just not something I ever did. the only time that ever happened was when I was majorly sick with the flu or something. I got sick with pneumonia (did not know it was, initially) a few years ago and I STILL kept trying to keep going..

I have been pretty self sufficient ever since my divorce in 1990.. did not need anyone to take care of me, i could handle things just fine, thank you. Always paid my own bills, took care of my own vehicle, insurance, etc... but having that special person in your life is a bonus i do enjoy. I got lucky when i found the one i am with now.. he is my rock and keeps me sane. Without him, these past couple of years would have been beyond my capabilities to cope with. And yet, i still feel awful having to have him support me financially.. i feel like a leech & a burden, and it sucks. Thankfully, he does not see it that way.. and has been supportive in all ways, not just financially. We are coming up on 22 yrs together.

so, again, Sunkacola, i apologize for jumping to conclusions that were obviously way off base.