Do you work / have career?

[PennyIA]

You sure you have CFS? The reason I ask is because there is no way you can be a software engineer and have CFS. Software development requires so much cognitive abilities and ability to remember is just insane. Not like health care where you just remember facts and that there is only one right answer. Software requires tremendous amount of thinking requiring your to solve business problem from scratch.

I take lots and lots of notes. Like EVERYTHING has to be written down. And I don't do any direct coding any longer - just tell others what they need to do and help them organize their work. But, yeah. My personal opinion is that I can't do my job very well. I can do it, some days are better than others, but there are a lot of bad days where all I can do is listen to the phone calls and just not make things worse by trying to contribute.

I have bone-crushing fatigue from morning to night. I have post exertional malaise. I have chronic pain in my left calf (muscular) and left knee (joint); my left arm (who knows what)... and the middle of my upper back. Peripheral Nueropathy on my right side that they swear isn't related to anything. I also experience frequently OI-types of symptoms, sometimes for months on end where I end up 100% bed-ridden. - but the doctor insists all of the OI-like symptoms can't be OI (and I'm tired of fighting him).

I'm undiagnosed, but due to the PEM, I think I probably have CFS along with something else undetermined. A lot of my symptoms can be tied to B12, B6 and Folic Acid deficiencies which the methylation protocol is supposed to address. If it fixes things, awesome, if it just reduces my symptom list, that would be ok with me. Heck, I'm ok with just a remission (though I'd be a LOT happier if I could come back in a few years and be able to say that it's a treatment that provided long-term relief).

 

[WillowJ]

I recall at school a career counselling session. I said I wanted to work with animals.
They suggested being a Taxidermist !

I wreckon the illness calls for some lateral thinking on career. the bog standard suggestions may not be the best.

Having said that , I am currently trying to solve my financial crises too.

that is seriously wonked.

I was thinking more about advice about what career will be around for a while and can be done low energy (and that one could drop in and out of, if necessary) than the personality tests. I've not had those, but I did have a nice chat with a disability counselor at one point, and an academic advisor at another. A lot of good it's done me, since I got worse instead of better...

 

[SOC]

that is seriously wonked.

I was thinking more about advice about what career will be around for a while and can be done low energy (and that one could drop in and out of, if necessary) than the personality tests. I've not had those, but I did have a nice chat with a disability counselor at one point, and an academic advisor at another. A lot of good it's done me, since I got worse instead of better...

I was told, long ago, by a "career counselor" that I should be a piano tuner.

Disability counselors can be really good, though. They have a sense of what jobs are working for people with limitations.

Great idea, WillowJ

 

[Ema]

Posts on the pros/cons of seeing a specialist have been moved to a new thread in order to keep this one on the original topic:

http://forums.phoenixrising.me/index.php?threads/is-it-worth-seeing-an-me-cfs-specialist.24534/

 

[RedLineBoy]

So today I decided to take 200 mg of 5HTP and suddenly my headaches are gone. I'll see how I feel tomorrow.

So someone with CFS what can do they do to financial keep float?

 

[SickOfSickness]

So someone with CFS what can do they do to financial keep float?

I suggest preparing for the worst. Imagining that in a few months or years they can do very little work anymore, so their income is extremely low or non existent. Doing everything that might help themselves down the road financially is just one way. (Cutting costs.) Another would be physically making things easier on yourself later. For example if a person lives in a building and has to climb stairs, I suggest moving to a place without stairs. Perhaps moving closer to someone who can give help when needed. Limiting energy and resting more.

 

[golden]

I was told, long ago, by a "career counselor" that I should be a piano tuner.

Disability counselors can be really good, though. They have a sense of what jobs are working for people with limitations.

Great idea, WillowJ

I sat there thinking about training to be a piano tuner for a while !
I would like a list of Alternative jobs....like this ...it might be helpful!

 

[SOC]

I sat there thinking about training to be a piano tuner for a while !
I would like a list of Alternative jobs....like this ...it might be helpful!

It would have made more sense if I was the least bit musical.

 

[RedLineBoy]

So taking 200mg of 5 HTP I feel good and normal...At least for moment I feel sense of normal being. Is that a good progress or a placebo?

 

[Sushi]

So taking 200mg of 5 HTP I feel good and normal...At least for moment I feel sense of normal being. Is that a good progress or a placebo?

Probably something about 5 HTP is good for you--raising serotonin? It won't cure you but feeling better is good!

Sushi

 

[SOC]

So taking 200mg of 5 HTP I feel good and normal...At least for moment I feel sense of normal being. Is that a good progress or a placebo?

So maybe you are serotonin deficient? There's meds for that.

 

[jimmy86]

I was told, long ago, by a "career counselor" that I should be a piano tuner.
.

Haha, I'd like to be a piano tuner, actually. Instead I am a PhD student, which I like very much too.

 

[Butydoc]

Haha, I'd like to be a piano tuner, actually. Instead I am a PhD student, which I like very much too.

Unfortunately I'm a surgeon. I had to go on a leave of absence last September because of my increase crashing and worsening brain fog. I won't be able to return to my profession unless I'm substantially improved. Oh we'll.

Gary

 

[Sushi]

Unfortunately I'm a surgeon. I had to go on a leave of absence last September because of my increase crashing and worsening brain fog. I won't be able to return to my profession unless I'm substantially improved. Oh we'll.

Gary

So sorry to hear that! My autonomic specialist used to be a hospital internist but had to go on disability due to passing out on rounds! He went back to medical school and studied the autonomic nervous system and now has a limited private practice.

So sad to hear of more practitioners becoming so unwell. I hope you find appropriate treatment that will allow you to practice again.

Very best wishes,
Sushi

 

[RedLineBoy]

Umm...how is that your a doc and can still work? How do you keep your concentration going?

 

[Sushi]

RedLineBoy

Butydoc said:

I had to go on a leave of absence last September because of my increase crashing and worsening brain fog. I won't be able to return to my profession unless I'm substantially improved. Oh we'll.

In other words, Butydoc is not working.

Sushi

 

[RedLineBoy]

The problem is I was hit with CFS when I was 19 so I really could not feel normal enough to devote time to building a career.

I wish I rather would have of been hit with CFS in my mid thirties or so. By then I would have a career.

This disease dose not take your memory or skills away so once you know something you will always be able to perform.

 

[SOC]

The problem is I was hit with CFS when I was 19 so I really could not feel normal enough to devote time to building a career.

I wish I rather would have of been hit with CFS in my mid thirties or so. By then I would have a career.

This disease dose not take your memory or skills away so once you know something you will always be able to perform.

You don't know what you are talking about since you did not train for years for a profession you now cannot perform. Your situation isn't worse than that of someone who got sick in their 30's. It's not the same dreadful you are experiencing, but it's an equally dreadful different situation. ME/CFS is terrible whenever you get it.

Have you been reading this thread you started? Doctors, lawyers, engineers, and others are telling you that they are NOT working at their chosen professions. This illness does take away memory and skills. You might benefit from reading the CCC or ICC definitions of the illness.

 

[Sushi]

The problem is I was hit with CFS when I was 19 so I really could not feel normal enough to devote time to building a career.

I wish I rather would have of been hit with CFS in my mid thirties or so. By then I would have a career.

This disease dose not take your memory or skills away so once you know something you will always be able to perform.

Fraid I agree with SOC. Most of us who trained for careers and not working because ME/CFS does take away memory, skills, and the mental acuity to try to put them together. Plus it takes away the stamina necessary to work and follow your career.

Sushi

 

[RedLineBoy]

I'm not saying CFS does not take away your mental stamina. It sure does but what it does it still allow you to work part time and perform somewhat. Enough for your to financially support your self.

I have not met many doctors and lawyers who have CFS so I'm basing my own opinion.