Do you work full-time?

[sunkacola]

Ah, Cookiebaker, there's no need for apology at all. We all misread things at times, and YES you can blame fibro fog if you want to, I blame it for things all the time!

You are in the process of learning the self care you need to learn, and progress on that of course takes time as you know. The fact that you are learning is great, and you get a lot of credit for that.

You know, I always say that I wouldn't have made it through this or that without my dogs as companions because they give me someone to love and take care of. I am grateful to them every day. But at the same time, I wonder if it is really true that I wouldn't have "made it through" those things. Would I have died? Ended up in a mental ward? Seems unlikely. While I credit them for keeping me here and (relatively) sane, and my gratitude to them is a good thing and they feel essential to my life, I strongly suspect that if I had not had them I would still be here and still outside of an institution. This is what I mean when I tell myself that I can do things that I think I can't, or manage things I think I couldn't have managed if not for......

Mind you, without the companionship and furry presences there's no doubt that I would be diminished in some ways. We all need companionship and someone to love and while we know survival is possible in even the most extreme situations that one would think are not survivable, there's a big difference between surviving and thriving.

 

[sunkacola]

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

Well, we are basically saying the exact same thing, just using different phrases to say it.
My point being that when a person has to rise to the occasion in whatever way that is, they often find that they are capable of more than they thought they were. Stories about this are everywhere.

And people with fibro or other difficult conditions who have responsibilities that they must meet because no one else will be doing it for them are often going to get really serious about learning the best ways to manage the condition they have because if they don't they may fail their obligations, which would feel unacceptable to them.

I know I have heard people who have been through something really seriously difficult or who have difficult conditions say that having their ( child/business/ family/ fill in the blank) to take care of was really a blessing because they didn't think they'd have tried so hard to take the right kind of care of themselves if they had not had to be there to take care of _____.

 

[cookiebaker]

Mind you, without the companionship and furry presences there's no doubt that I would be diminished in some ways. We all need companionship and someone to love and while we know survival is possible in even the most extreme situations that one would think are not survivable, there's a big difference between surviving and thriving.

Amen to that!!!
the Furbabies are just as important to me as my human partner.. about the only real major difference between the four-legged and two-legged is the two-legged can be useful for bouncing ideas off of and getting real feedback from.
sure the four-leggeds can give feedback in the form of tail wags and kisses, but actual conversation is just a tiny bit outside their expertise.. LOL

 

[fimi]

And people with fibro or other difficult conditions who have responsibilities that they must meet because no one else will be doing it for them are often going to get really serious about learning the best ways to manage the condition they have because if they don't they may fail their obligations, which would feel unacceptable to them.

I see what you're saying ... people may work harder at self care so they are able to meet their responsibilities - which in a way are pulling them through and giving them a reason(s) to try.

But ... I also know people who have serious conditions that don't have responsibilities to meet, and they try just as hard because they simply want to make themselves feel better - that's an 'obligation' they make to themselves.

Regardless of our 'responsibilities' or 'obligations' I think most of us just do the best we can to face each day.

 

[Sabina]

I applied for FMLA & received certain “accommodations” for making full time work easier. Such as working from home 3 days per week & ergonomic chairs, keyboard, headset, etc. These all helped me tremendously. Granted, I worked for a large company with an HR department & also accrued a lot of time off so I was lucky.
All the best

 

[Con]

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!

Hello simplelife. I work full time and being able to work from home has helped. It allowed me to use ice packs or heat easily with no outside noises, smells or bad lighting. Work had made an adjustment for me coming back into the office. However, now that has increased and I am not sure how it will play out. I feel I am pushing myself to work when personal takes a back seat. And yes I do need my income. I pace myself on weekends or evenings in order to be able to work. Or take a vacation day if not able to work. I am also still trying to figure it out a year into diagnosis. I did tell a select few at work regarding the fibro. I had a really bad flare a month ago and looking back can see how it effected work right before flare and after. I have thought many times about doing something less stressful.
Best of luck to you for taking that step and reaching out.
Take the bits and pieces that work for you.

 

[sweetkamie20]

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!

Hi, simplelife . It looks like you received a bundle of ideas. I'd like to share my experience because I think it generally applies to many situations ( but not all)...

I tell people about fibro if it is going to affect them - even an employer. I find these results from it:

1.) people don't assume I have a bad reason for doing/not doing something. I.e. If I don't attend most family functions it's not because I don't like them. It's because of fibro. If I call in sick to work it's not because I'm getting my nails done. It's because of fibro.

2.) people have more compassion when they know

3.) people will accommodate my needs without me having to persuade them. I.e. My family proactively accommodates which environments we meet in rather than me, for some mysterious reason from their perspective, persuading them to do what they don't want to

4.) even if an employer has no compassion, I'll find a coworker that does and that person will make me feel like I'm not alone (and may even try to help me somehow). Bonus: if a coworker knows that my "special treatment" is rooted in a medical condition, they won't as easily become jealous. "Why does she get to call in sick all of the time?" If they know what fibro is they might look at similar to being jealous of a person getting chemo treatment. What's there to be jealous of? Cancer and a day off work? Fibro and a day off?

And the added bonus is that the public begins to realize fibro is real. You may even be helping someone find the cause of their symptoms.

Personally, it was scary to be open about my health at first but epilepsy made it easy enough. Once I opened up about it I got a lot of compassion and grace and stopped feeling like a burden asking for an accommodation. I used that experience for fibro and it's been much easier than not.

Something to strongly consider: provide a document to an employer which details the medical research just to be sure they don't think it's psychological...

However you decide to handle it, I hope you find your path to managing fibro easily

 

[JayCS]

Hi simplelife, I really hope you are now getting more encouragement and comfort from these last posts.

I know from your last thread that your brain fog is making it tough to manage 10h/wk. That brings you close to my situation from lack of energy. However, severe brain fatigue I think will be even more of a challenge than physical fatigue, because it can nip orientation, motivation, focus in the bud.

Pressure caused by the challenge of our responsibilities in that kind of situation in my experience worsens it. That in my past caused anxiety which made me gallop like mad aimlessly, procrastinate and fall into binging patterns, destroying self-care. For this, my way out is to step out of the mill, open up, ask for help and support. This is also what all people involved in counselling etc. recommend.

So you might be able to use the challenge of the responsibilities, which you probably already feel to the full, to focus enough to first get some support, some care to be able to get into a position to improve self-care. Being a single mum is not comparable to any other responsibilities, esp. the emotional side of it.

I deliberately brought up the term 'rising to the occasion' above to show the problem of trying to meet a certain kind of responsibilities even tho we might not be capable of doing so. This "occasion" as a single mum isn't one event a year, it can often start before getting up and continues the whole day. Hard for someone without kids to empathize. And I definitely get how tough it'll be for you.

As I implied above, the situation may be different where you are: the support systems here in Germany may be quite a bit better than in the US, and at the same time more people may be more motivated to meet their responsibilities, so they don't need to be told they can do more. So whilst the internal pressure here may be strong, the outside pressure not as strong and the support network stronger. BUT I've often read of people in the US like here able to ask various organizations for support. With the aim of getting help for what isn't possible to change and for getting a break to improve self-care, also for wisdom what is possible and what isn't. (In Germany moms sick or in 'distress', esp. single moms, can get a stay in a health resort/spa prescribed.)

 

[sweetkamie20]

Hi simplelife, I really hope you are now getting more encouragement and comfort from these last posts.

I know from your last thread that your brain fog is making it tough to manage 10h/wk. That brings you close to my situation from lack of energy. However, severe brain fatigue I think will be even more of a challenge than physical fatigue, because it can nip orientation, motivation, focus in the bud.

Pressure caused by the challenge of our responsibilities in that kind of situation in my experience worsens it. That in my past caused anxiety which made me gallop like mad aimlessly, procrastinate and fall into binging patterns, destroying self-care. For this, my way out is to step out of the mill, open up, ask for help and support. This is also what all people involved in counselling etc. recommend.

So you might be able to use the challenge of the responsibilities, which you probably already feel to the full, to focus enough to first get some support, some care to be able to get into a position to improve self-care. Being a single mum is not comparable to any other responsibilities, esp. the emotional side of it.

I deliberately brought up the term 'rising to the occasion' above to show the problem of trying to meet a certain kind of responsibilities even tho we might not be capable of doing so. This "occasion" as a single mum isn't one event a year, it can often start before getting up and continues the whole day. Hard for someone without kids to empathize. And I definitely get how tough it'll be for you.

As I implied above, the situation may be different where you are: the support systems here in Germany may be quite a bit better than in the US, and at the same time more people may be more motivated to meet their responsibilities, so they don't need to be told they can do more. So whilst the internal pressure here may be strong, the outside pressure not as strong and the support network stronger. BUT I've often read of people in the US like here able to ask various organizations for support. With the aim of getting help for what isn't possible to change and for getting a break to improve self-care, also for wisdom what is possible and what isn't. (In Germany moms sick or in 'distress', esp. single moms, can get a stay in a health resort/spa prescribed.)

Very well reasoned Jay. I’m glad you brought up the caution to not prioritize rising to the challenge over self care. The best plan for managing fibro seems to me to recognize what’s healthy and realistic in the short term and then long term and to develop plans around those realities. It sounded to me like simplelife is looking for insight into tangible solutions (she is already motivated to resolve them and doesn’t need any incentive).

Simplelife, generally it takes time to figure out how to manage your symptoms well. Many of us made some noticeable and quick progress in lessening the frequency or severity of symptoms through things like reducing/moderating stress, including exercise/vitamins, and changing our diet. We still had work to do to get substantially good at navigating life but we did get some initial improvements.

Some of us have made substantial progress within a year or 2. There’s no formula we can give you for how to manage YOUR specific symptoms but there are lots of recommendations about what’s worked for us and I have found those recommendations shaved off years of my trials and errors.

It seems to me that once someone makes managing fibro one of their primary goals and implements different things they are in a good position to expect significant progress within a year or two.

Everyone’s journey is different depending on options, resources, etc. so don’t take any of my bad advice personally. It’s just general advice that might not apply to you

If I was a mom and looking at what to do next I would probably consider whether I can go back to college. Forgive me for going into great detail about this if you are already aware but I like to throw this out here in case someone else reads this and doesn’t know

I really like the college option because
#1 - you are not working under duress as like a job - you set your schedule, you are only responsible to be in class about 10 hours a week, and you can even attend online! And some classes you can essentially do when you feel well because they are recorded lectures!
#2 You can choose a long term career that seems like a good fit for someone with your symptoms/needs.
#3 Lots of colleges and federal programs offer special assistance for single moms, first generation college enrollees, disabled persons, minorities, etc. There are lots of programs that you might fit perfectly.
#4 I think just about EVERYONE will receive a college loan if they apply. Those loans are enough to pay for college and living expenses.
#5 professors are pretty awesome - way more awesome than a boss. If you are candid with them about why you need an extension on a project, they usually honor your request. Bosses are relying on you to work, professors aren’t relying on you for anything.
#6 the college will give you special accommodations no problem - do timed exams give you anxiety? They will break your exams up for you. (You need to ask the college how they can accommodate your needs and if their response doesn’t satisfy you, then tell them what you need and they can probably help you.)

My next course of action would be to look for resources in the community. I would see if there is anyone in social work that had ideas. I would try to see which federal or state support I would qualify for.

I would try to link up with a local support group perhaps. If the people on this forum lived near me, I think we would help each other out when we could. @cookiebaker might be heading to the grocery store to get some cookie dough and if I was having a bad day I could ask, do you mind bringing me some cookies/spaghetti sauce? . If I suddenly felt good and wanted to hang out, I could hit up @Auriel and ask if she wanted to have tea and crumpets and or I would ask @fimi if her cat Mittens needs any catnip. @JayCS i would be like, hey, got any vitamins you aren’t using that I can try? seriously, if there’s a group for people dealing with disabilities I think we’d be surprised how willing they are to help each other if they’d just ask…

People love to help others. They just don’t often ask and when they do we say no. If they aren’t being taken advantage of they will appreciate the opportunity to be helpful. Just like we all enjoy helping others

One last thing: for some reason I think of being a home-based customer service rep as being pretty easy (if it’s calls about simple stuff). i think you can do it at home, you are taking lots of identical calls where you are given a script so you can eventually do it without effort. Not sure if I’m accurate here but it’s an idea.

 

[cookiebaker]

I would try to link up with a local support group perhaps. If the people on this forum lived near me, I think we would help each other out when we could. @cookiebaker might be heading to the grocery store to get some cookie dough and if I was having a bad day I could ask, do you mind bringing me some cookies/spaghetti sauce? . If I suddenly felt good and wanted to hang out, I could hit up @Auriel and ask if she wanted to have tea and crumpets and or I would ask @fimi if her cat Mittens needs any catnip. @JayCS i would be like, hey, got any vitamins you aren’t using that I can try? seriously, if there’s a group for people dealing with disabilities I think we’d be surprised how willing they are to help each other if they’d just ask…

Absolutely!!
Even if it was just to lend an ear for a little while it would be helpful - talking to others in a similar situation that understand what you are going through can be such a lift, emotionally.

I have tried finding a support group near me - for fibro, chronic pain, CFS, etc - and sadly, they are seriously lacking.. as in nothing at all.
sure, there are lots of facebook groups, but i tend to avoid fb.. way too much "drama" for my tastes, and it is a similar problem there with members not being nearby.. they are scattered all over the place.

 

[sweetkamie20]

Thats the bummer part - whether there is even a local support group. Some people have that gift of bringing people together. You need someone that’s willing to do that. Or you create an informal support group out of neighbors perhaps. If I recall cookie baker you don’t have nearby neighbors really…

 

[cookiebaker]

Thats the bummer part - whether there is even a local support group. Some people have that gift of bringing people together. You need someone that’s willing to do that. Or you create an informal support group out of neighbors perhaps. If I recall cookie baker you don’t have nearby neighbors really…

no, i really dont.. one of the joys of living in the middle of no where, LOL

the nearest group that would be even remotely applicable to me is about an hour away.. not ideal, to be honest.

was looking at the American Chronic Pain Association's website, and they do have guides to help one get a group started.. but not really sure i am up to that task at this point.. maybe at a later date? i dunno...

 

[sweetkamie20]

was looking at the American Chronic Pain Association's website, and they do have guides to help one get a group started.. but not really sure i am up to that task at this point.. maybe at a later date? i dunno...

Do you think once it got started it’d be sort of easy after that?

 

[Auriel]

I could hit up @Auriel and ask if she wanted to have tea and crumpets.

I'd bring cupcakes kam's! (gluten free and covered in edible stars) make a party of it! we had support groups in our surroundings areas but people weren't showing up so they cancelled them , 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

 

[cookiebaker]

Do you think once it got started it’d be sort of easy after that?

possibly? I dunno..

we had support groups in our surroundings areas but people weren't showing up so they cancelled them

and maybe that is why there is nothing close to me?
I would darn sure take advantage if one was.. it is nice having this forum, dont get me wrong.. but it would be nice to connect with others that are close by, face to face.. plus, i kind of need the reason to get up and moving and out of the house..

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

Very much so!!