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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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who am I?

:DI've been doing a little searching on the site

and I've come across a term I'm not familiar

with "AR" I think it has something to do with

keeping up with an exercise regime.

I guess I haven't gotten to that place yet, I'm

still at the stage where when I get to the top

of the stairs I have to lay down and recharge.

That has been the worst for me. I attended

my sons baseball game last night, my husband

had to meet me half way across the field to

grab the two coffee's I was carrying because

my arms were too weak to carry them any


And yet according to my insurance company, I

still maintain the ability to work.

Denial has also played a huge part in my

recovery, it took me a long time to gain the

position I had held prior to getting sick.

I allowed my profession to define who I was, I

now know how wrong that is on so many levels.

The trick is convincing my self.


HI Rosalie - glad you started a blog. AR refers the amygdala retraining technique created by Ashok Gupta. I've been doing it for some time now, off and on.

Is there any way you can use the skills you've gained to work part time (that is if you have the energy) at another job? Or work from home? Could you transfer your skills to another profession that would allow you to work at home - if you have the energy to do that? This is an area that is so underserved in ME/CFS; how to be able to work in just bits and pieces?

We are all certainly caught in this work is who we are trap to one degree or another - another knotty issue@
I so wish I could work,I .miss it so much. Unfortunaltely I'm a Polcie Officer and the requirements are very strict. I have to pass a rigourous training every year, my job entails a lot of driving. I'm open to any and all suggestions, I know its hard for some to understand why its such a part of my life, but if you use this site for example, The people who strive to make this work and put there all in to it, why? Because you care! And thats exactly how I feel about my job. I'm trying so hard to keep my family first, because I know if I go back to work in any capacity, I will lose what ever time I spend with them now. My last days of work had me working a 6 hr shift in the office then coming home and crashing. I never saw my kids at all and I know they're important, and I missed spending time with them.

Please excuse my ignorance, but, are there actually jobs that can be done at home? When I asked my employer about working from home doing computer work, he denied me without blinking.

There are some things that can be done from home.

I've started doing some freelance writing recently. I don't know whether I'll make much money or not, but without it I'm earning nothing, so anything is an improvement.:)

I'm sure there are other things, outside of writing as well. Don't know what they'd be right offhand. :) You could always do a google search or whatever of working at home, see what other people have come up with.
Rosalie could I copy your Post yesterday about police work do the work forum?

That is the big question what can one do to make an income when one is disabled by this disease? Or if one can't make an income what can one do to remain productive? To make a difference? Those are just questions right now but I hope if we keep raising them then we will start to come up with some answers. Christina Gombar, a member of this forum, is very interested in these questions..

there lots I would like to write on this new discussion board, but as I don't have a computer at home, I have to sneak pockets of time at work. (I only have 30 mins lunch break & am often tired by the end of the working day to stay back & type).

I wrote a couple of lengthy pieces last week staying back after work & then promptly lost them when I attempted to post them on the discussion board. So here's hoping this one works. I'm staying back at the office to type tonight.

Rosalie, I had to smile (in the nicest possible way) when I read your sentence about carrying the 2 coffees half way across the field & your husband meetiong you to help as your couldn't carry them all the way.

I have Fibromyalgia (as well as severe back pain, despite lumbar disc surgery in June 2008) and several other chronic health problems).

But am continuing to work full-time (at times with considerable pain and/or fatigue).

I remember a couple of years ago being so exhausted that I never thought I'd being able to do the 15min walk home. Well, eventually I arrived home & walked in the door of my ground floor apartment & just collapsed in a heap on the couch (or do you say "sofa" in the US?). I was too exhausted to take off my coat, so just sat there (I am single & there's no way I could get to the phone that night to ask for help). I quite literally couldn't move. I went to raise my right hand to get the TV program next to me & couldn't move my arm at all. So I sat there, sort of frozen in time, unable to get up, put the light on or take off my coat. I sat there for nearly 4 hours in the gradually darkening room. Eventually I was able to move. I got off the couch & undressed, grabbed a couple of slices of bread (I was too tired to butter them). Then I shuffled to the bed, got in & slept the sleep of the dead (even though I normally take a drug to reach some deep level of rest).

When someone with CFS or FM says they haven't the strenth to pick anything up or move, I know exactly where they're coming from.

This total disablement, to this degree, never happened again (I'm glad to say), but there have been many times I've caught a taxi home from work (takes 3 minutes by car) as I was too tired to walk home. I remember once sitting down in the gutter in the local shopping precinct because my back hurt too much too stand, & the taxi I had ordered was late. How embarrassing.

I can relate to your comment about not having the strength to carry 2 coffee cups.

And yet, I have continued a full-time, often stressful job.

I was threatened with the sack if I didn't turn up every day (after being late or leaving early with pain many times in 2004). After I was diagnosed in May 2006 & thought to tell my Boss - he just said "I'll give you 2 months to get some medication & resolve your health issues".

Of course, we all know these types of ICI (invisible chronic illnesses) take alot of time & patience to work out the best course of treatment. Everyone is different & may have varying degrees of symptoms. We are all unique on this planet & our individuality makes for a very difficult prognosis & treatment (to deal with our symptoms).

My Boss refused to accept/read the article I'd printed about Fibromyalgia. All he cared about was having an able bodied "wonderwoman" to do the job full-time.

I believe that the mind is incredibly powerful and just occasionally, the phrase "mind over matter" works for me. I couldn't afford to lose my job as I live from pay day to payday & have a big credit card bill to pay off. I can will myself to do my job (well, 97% of the time these days - I sneak breaks, when no one is looking). My co-workers would never dream of the amount of will power it takes to carry out my daily workload.

But I have high medical bills & rent, and my remaining pay is spent on the best organic meat, fish, eggs, fruit & veg & nuts I can possibly afford. I have no money left over.

Rosalie, like you, I would like to find a money paying job I can do at home. I am a prolific reader & writer, but my eyesight has a hard time seeing small print thse days even with my bi-focal contact lenses, and the tendons on the top of my right hand becomes quite painful with typing for hours.

As a police officer, Rosalie, you must be intelligent & quick thinking, so despite your symptoms, I'm sure there must be a way to earn some money in short bursts, when you have energy. But I really do sympathise with your plight - I haven't worked out what else I can do (either). Jobs are scarce & I'm better off doing my current (at times) difficult job, because after 16 years, I can often process some of my accounts work in my office without expending too much memory or mental energy ie on autopilot.

I do some things so automatically, that if someone changed one item of my routine, I would probably have a breakdown. And I actually did have a breakdown in 1998 - I remember that time of my life surprisingly well.

Perhaps, if you've got a sympathetic, sensitive, thoughtful & caring husband, you could both sit down one evening & make a list of all your good points & bad points, list all your skills & how your symptoms relate to these skills. Symptoms of CFS & FM wax & wane, so it's important to work out how much time & to what degree your mental & physical resources can manage tasks.

Secondly, are there part time jobs in your area? You don't want to waste energy & money in travelling to a job (which may only last 2 hours a day). Do you have much in the way of job sharing where you live.

I live in Melbourne, Australia & I can assure you that it can't compare to the US. I suspect the US has a much more dismal financial climate than we do in Australia.

Don't just think about your obvious skills. Think about those that may not be apparent. Do you have a good phone voice, are you a good organiser, do you think "outside the square" , are you creative, can you cook well, are you able to type well. Does your local council or community centre have any sort of part-time work. Inititially, you may need to forget about high pay.

Perhaps you could do some small job which creates a network of people who "know other people". Networking is a great way to "put yourself out there" and show people what you've got to offer. How about volunteering at your local library - no pay perhaps, but you might get to meet people who you would never see when working full time.

Don't expect to land the perfect part time job which is interesting, challenging & well-paid. Start with small steps that lead to new paths you've never trodden before.

Well, must go now & face the walk home. I hope I've given you some ideas to think about.

Best Wishes

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