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Hi, I was diagnosised with Mitochondrial Myopathy in the Complex II

and Complex III area about a year ago. I am still working and wish

to do so as long as possible - I currently have an opportunity for a

job that is only 5 minutes from my house, hours are 2PM-10:30PM,

rotate weekends, bascially staying at the same location - I was

wondering if anyone " out there " who is still working, what work

environment, work schedule they felt really helped them and didn't

compromise their ability to work. I have to make a decision like

yesterday. The job I currently have is training staff, I go to

different sites (so I'm usually on the road) it is a 9-5 position

with off on weekends, it is demanding, but has potential and

interesting - but it lacks a team. HELP, what are others doing out

there with working - any suggestions or opinions about this

opportunity I have before me????? I would really appreciate the

feedback. Thanks.

Clara W.

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Clara,

That is a tough one to say. I myself work from 7:00 AM to 3:30 PM,

Mon-Fri. I guess it would depend on how your handle your sleep pattern,

but I myself would have a rough time being up during the day and not

going into work until the PM. I think I would already been drained by

the time it was time to go to work. Would you be able to sleep for a

few hours before going into work? I know I need to keep the same

schedule all the time for me to manage at my best, but YMMV.

cjw3606 wrote:

>Hi, I was diagnosised with Mitochondrial Myopathy in the Complex II

>and Complex III area about a year ago. I am still working and wish

>to do so as long as possible - I currently have an opportunity for a

>job that is only 5 minutes from my house, hours are 2PM-10:30PM,

>rotate weekends, bascially staying at the same location - I was

>wondering if anyone " out there " who is still working, what work

>environment, work schedule they felt really helped them and didn't

>compromise their ability to work. I have to make a decision like

>yesterday. The job I currently have is training staff, I go to

>different sites (so I'm usually on the road) it is a 9-5 position

>with off on weekends, it is demanding, but has potential and

>interesting - but it lacks a team. HELP, what are others doing out

>there with working - any suggestions or opinions about this

>opportunity I have before me????? I would really appreciate the

>feedback. Thanks.

>

>Clara W.

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

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Clara

I work in a school, so keep school hours, but I work with small groups of

special education and not in a classroom. I often stay until 5:00 to get

work done. I could not work without using my power wheelchair. I had to go

to another site twice a week for a couple of hours and found that very

difficult.

laurie

>

> Reply-To:

> Date: Tue, 29 Jun 2004 19:31:49 -0000

> To:

> Subject: Work!

>

> Hi, I was diagnosised with Mitochondrial Myopathy in the Complex II

> and Complex III area about a year ago. I am still working and wish

> to do so as long as possible - I currently have an opportunity for a

> job that is only 5 minutes from my house, hours are 2PM-10:30PM,

> rotate weekends, bascially staying at the same location - I was

> wondering if anyone " out there " who is still working, what work

> environment, work schedule they felt really helped them and didn't

> compromise their ability to work. I have to make a decision like

> yesterday. The job I currently have is training staff, I go to

> different sites (so I'm usually on the road) it is a 9-5 position

> with off on weekends, it is demanding, but has potential and

> interesting - but it lacks a team. HELP, what are others doing out

> there with working - any suggestions or opinions about this

> opportunity I have before me????? I would really appreciate the

> feedback. Thanks.

>

> Clara W.

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

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Guest guest

Hi Clara,

I would encourage you to follow the signals your body gives you

regarding how hard and how long you work. It sounds as if the new

opportunity may be less stressful on your already stressed body.

When faced with a tough decision like this, I try to be very

analytical and weigh the benefits against the drawbacks.

I talk a good game, but I am the worst role model in the world when

it comes to looking out for my health, so please do not follow my

example.

I work in clinical research, and in addition to four hours of

commuting each day (car, train, bus), I work full-time, and often

travel domestically for my job. I've got two west coast trips this

month alone (I'm in Philly). I love what I do, but I need to find a

way to slow down so I can take care of my health. In payment for

putting my body through this stress, I have constant muscle pain and

weakness, and a whole host of other complications, including SLEs on

an alarmingly regular basis.

I am actively looking for a less stressful way to do the work I love,

and I hope I find it before I burn myself out completely.

Hoping you find an answer,

Theresa

(primary carnitine deficiency, suspected MELAS)

> Hi, I was diagnosised with Mitochondrial Myopathy in the Complex II

> and Complex III area about a year ago. I am still working and wish

> to do so as long as possible - I currently have an opportunity for

a

> job that is only 5 minutes from my house, hours are 2PM-10:30PM,

> rotate weekends, bascially staying at the same location - I was

> wondering if anyone " out there " who is still working, what work

> environment, work schedule they felt really helped them and didn't

> compromise their ability to work. I have to make a decision like

> yesterday. The job I currently have is training staff, I go to

> different sites (so I'm usually on the road) it is a 9-5 position

> with off on weekends, it is demanding, but has potential and

> interesting - but it lacks a team. HELP, what are others doing out

> there with working - any suggestions or opinions about this

> opportunity I have before me????? I would really appreciate the

> feedback. Thanks.

>

> Clara W.

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