Do you work full-time?

sunkacola

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Do you think once it got started it’d be sort of easy after that?
I have started up a support group, although not for fibro or chronic pain. It was pretty easy, actually. I just put u p an ad and a couple people contacted me, then they brought a couple more and in no time we had a nice group of 5 or 6, which is all you'd really want. You just have to have a set topic and goal, decide ahead of time on a format you want to take, the rules on conduct, and let everyone know what those are. Of course, once you got a group going you would be open to suggestions about modifying the format or meeting time or whatever if others have suggestions.

Most libraries in the US will give you a meeting room. Or if you don't mind people coming to your house, do that. (I did that but it was a very small town so I had no reason to expect any crazies might show up; I wouldn't do it in a city). Sometimes a hospital will give you a little room for a support group since it is about a medical condition. Or a church. All of these would be free meeting spaces and in public and safe.

Once the group gets going it is very easy to maintain, as long as people are getting a benefit from it.
Even if only two people show up, that's a group, and would be potentially very helpful.
 

fimi

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on the subject of people giving, givers don't usually ask for things and just give (they usually come under empaths, earth angels and lightworkers) they sometimes attract takers who just want to use and manipulate (they have to be careful not to get drained)when they get a bit stronger they figure things out, give to the needy (genuinely) not the greedy (that's what I learned) once i got back connected to divine energy and trusted what/who it was guiding me to (and away from) things got better, I used to be terribly self sacrificial (to my detriment) those days are gone now 👌🏻
I agree... no more complex energy zapping people for me either ... but give me a room full of animals any day ;)
 

simplelife

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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.
Thank you. I've been considering only WFH jobs, so I must be on the right track!
 

simplelife

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Acting as if everything was fine is something I had a lot of experience with starting early in my life...


...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.
I get what you're saying, but what I was really asking is what KIND of career can one realistically do while living with extreme pain and fatigue? Laywer? Doctor? College professor? CEO? Or more like an office job?

Yes, we do what we have to, humans are amazing. I've spent most of my life learning that lesson very well. But there's no way I'd be able to do the work I am trained for, what my professional background is in (wildlife biology). I can't be in the field, away from food/shelter/water except what's on my back, for 12 hrs/day for months at at time. I can't work 60hrs/week and be a single mom. It's been an extremely painful process to come to terms with having to give up a career I dreamed of since childhood and got an advanced degree to pursue. NO. We can't just do whatever it takes to do what we want. We have to do what's realistic. That's what I'm asking.

So now I'm just trying to figure out what's realistic for me. To be frank, you kind of make it sound like what's realistic is a not very good life, one where I have to suck it up and suffer just to get by. I've done plenty of that already and that's not a life I want to lead. I'm not going to lose hope that life can still be fulfilling and enjoyable. But thanks for the perspective.
 

simplelife

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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.
Thank you. I appreciate your response here because I also interpreted that comment as a subtle accusation of laziness or lack in personal merit/worth/grit for those who can't figure it out and do it all. I'm looking for wellness, not more suffering. I'd rather be poor and have time for my wellbeing!

I'm learning my limits and I'm proud that now I will slow down, or even STOP as I approach my limits. I completely hit the wall otherwise and then I'm out for days. I'm sad to give up a lot of things, but I'm also hopeful I'll be able to reintegrate some of them as my financial stresses lessen (presumably, with stable income!). Just trying to figure out what kind of work will suit a condition that flares up unexpectedly, or that pushes me over the edge if I try to do too much.
 

simplelife

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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!
THANK YOU. Just what I needed to hear. Very helpful! I'm also looking at jobs I can do from home/online.

Good luck and hang in there. I hope this regimen works until you're able to retire.
 

Cutiegirl

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Haha...I spoke too soon. Came down with an ear infection and am on antibiotics. Had to dose myself with honey, lozenges and cough meds all full of sugar. Now I know that sugar causes flare-ups for me. Need a sick day for Monday (but I anticipated this and had emergency plans). So miserable. I will go back onto my 4 day detox then and then back to my baseline elimination diet. Will have to pick a new item to try.
 

cookiebaker

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but what I was really asking is what KIND of career can one realistically do while living with extreme pain and fatigue?
medical billing or customer service (phone work) are two I can think of right off.
 

JayCS

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what KIND of career can one realistically do while living with extreme pain and fatigue? Lawyer? Doctor? College professor? CEO? Or more like an office job?
extremely painful process to come to terms with having to give up a career I dreamed of since childhood and got an advanced degree to pursue. NO. We can't just do whatever it takes to do what we want. We have to do what's realistic. That's what I'm asking.
my professional background is in (wildlife biology)
what kind of work will suit a condition that flares up unexpectedly
This has made me remember Bolles' "What Color is Your Parachute?" with the example of someone dreaming of becoming a pilot, but unable for physical reasons they realized that the main part of this dream for that person was 'being above it all, overviewing everything' and became a crane operator. Unlikely praps, but makes a point that it's good to know exactly how our dreams have come about.
So it may in all "desperation" still be trying to balance out our our reality (flare) with a certain proportion of dreams (wildlife)...
Then I think it's more about how possible it is for us to control hours and types of activity than what specific profession (which then still might include wildlife in the widest sense)... The profession may be more dependent on what we can get our head around with and without brain fog, not sure if you have to watch for that (yet...).
Home office is one important aspect, self-employment or not another - less pressure from the outside, but praps more pressure on the inside...

Regarding wildlife: I know someone who works for a forest trust who since CoV does a lot of home office by choice. Even closer to wildlife may be some kind of wildlife trust? The advantage would be you're already an expert. As well as closer to your original dream. Unless that hurts too much. I unexpectedly had to choose a new career at a similar point to you. However I was able to develop the second one to be closer to where I'd wanted to be than I could have developed the first...

So what colour will your parachute be? And how will it be made? I'm curious! 👐
 
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cookiebaker

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Thank you. I appreciate your response here because I also interpreted that comment as a subtle accusation of laziness or lack in personal merit/worth/grit for those who can't figure it out and do it all. I'm looking for wellness, not more suffering. I'd rather be poor and have time for my well being!

I'm learning my limits and I'm proud that now I will slow down, or even STOP as I approach my limits. I completely hit the wall otherwise and then I'm out for days. I'm sad to give up a lot of things, but I'm also hopeful I'll be able to reintegrate some of them as my financial stresses lessen (presumably, with stable income!). Just trying to figure out what kind of work will suit a condition that flares up unexpectedly, or that pushes me over the edge if I try to do too much.
I can assure you it was not intended to infer "laziness" at all.. it is sometimes difficult to understand context/meaning of a statement in written form without the additional information gleaned from body language and/or tone of voice... something we all need to keep in mind online like this.

as to your question about what kind of career - you can do a lot of things, but it will require thinking outside of the box a little - how can you put your training to use in a way that is beneficial for both you and the wildlife you want to help? Being out in the field you have already determined is probably not going to work well for you, so what can you do that does not require that part of it? What would you do after a trip to the field? Is that something you can build on? compiling research notes, writing reports, researching impact of habitat loss, that sort of thing?

As you learn to pace yourself, and take the time out for self-care, you will find a way to make things work. You will find you can do a lot more than you think you can right now. Just take the time to learn how to think outside of the box - give yourself that freedom. Don't think you have to do things in a set way.. there are usually work-arounds that will accomplish the same end goal, but it is up to us to figure out what those are.
 

sunkacola

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I get what you're saying, but what I was really asking is what KIND of career can one realistically do while living with extreme pain and fatigue? Laywer? Doctor? College professor? CEO? Or more like an office job?

Yes, we do what we have to, humans are amazing. I've spent most of my life learning that lesson very well. But there's no way I'd be able to do the work I am trained for, what my professional background is in (wildlife biology). I can't be in the field, away from food/shelter/water except what's on my back, for 12 hrs/day for months at at time. I can't work 60hrs/week and be a single mom. It's been an extremely painful process to come to terms with having to give up a career I dreamed of since childhood and got an advanced degree to pursue. NO. We can't just do whatever it takes to do what we want. We have to do what's realistic. That's what I'm asking.

So now I'm just trying to figure out what's realistic for me. To be frank, you kind of make it sound like what's realistic is a not very good life, one where I have to suck it up and suffer just to get by. I've done plenty of that already and that's not a life I want to lead. I'm not going to lose hope that life can still be fulfilling and enjoyable. But thanks for the perspective.
If you read my previous responses to people, above, you will know that there was not the slightest intention or indication in my post concerning laziness. Nor did I say we "could do whatever it takes to do what we want". I think it's always good to real all the following comments by the person you are quoting before commenting on someone's post.

Also, I did not say that a person has to do any certain job if they cannot manage it. I'd never say that, which you will know when you have been here for a while and read more of the posts I and others have made. What I was saying is that if you have to put food on your table or take care of a child you will find a way to do it. Unfortunately, as is the case for you, that often means finding a way to live and/or work that is very different from what was planned. I am so sorry you worked so hard to reach a goal that now is too difficult for you to pursue, especially one so interesting and important.

And of course I have never indicated that what is realistic for people with fibro is a "not very good life". Again, if you read other posts of mine, especially my advice post, you will know that I always strongly advocate for just the opposite. I personally have gone from that not very good life to one that is almost normal by taking the right kinds of care of myself and I always tell everyone here they can do the same ......... that people with fibro can lead vibrant and fulfilling lives.

To follow along further with the spirit of what I was saying, my first thought is how many ways are there of being a wildlife biologist? If the only way to do that is to manage physical tasks you cannot do any longer, then that's that, unless you experience improvement in what you can do, which is possible. But with many careers there are ways to put the degree and training to use in many different ways. Since I don't know your field well, I don't know if that's true for you. But I am thinking for instance that there are hundreds of ways to be a medical doctor, all different in what is required in terms of physical ability. Some you can do while in a wheelchair, others require a lot of physical strength. That is probably true for many fields of work. Maybe there's something you can do in your field even if it is not what you dreamed of. I hope so, for you. (And again, so sorry you have to go through the acceptance of that...that stinks. )
 

sweetkamie20

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I agree... no more complex energy zapping people for me either ... but give me a room full of animals any day ;)
Yyyyeeesss. I'm not this person, but I wouldn't mind 🤣
 

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EzbG

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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.
I tend to agree - after dx, I separated from then husband, and now HAD to support 2 daughters, alone. I managed just fine, until the back injury. Even then, I did okay for quite a while, even after starting my own business.
 

sunkacola

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The above photo would be about me except with dogs, if I had my way about it. The small space I live in means I am limited in how many I can have, though. :)
 
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