Do you work / have career?

[Olena]

Hello everyone! I have a lot of work before the onset of illness (getting up at 6 am and went to bed at 12 at night), very strong, I love to work, I walk a lot - more than 10 miles a day.

I got the VEB and zoster virus, but continued to work. I had a lot of damage: breathing (could not breathe), numbness hands, shaking legs, I wanted to sleep all the time.

I benefit from treatment, but a lot of nerve damage from the varicella zoster.

 

[Little Bluestem]

Hi Olena, are you able to work now?

 

[Olena]

Yes, now I'm working as usual, but it's hard.

I benefit from treatment with human immunoglobulin against Epstein-Barr virus and Monolaurin.

I like the load on the muscles, I feel that this is necessary for my

 

[RedLineBoy]

How is that Dr. Jacob Talibeth or whatever his name is is able to work / promote his product from fatigue to fantastic if he has CFS.

He claims he has CFS, but then how did he end up finishing med school?

 

[SickOfSickness]

How is that Dr. Jacob Talibeth or whatever his name is is able to work / promote his product from fatigue to fantastic if he has CFS.

He claims he has CFS, but then how did he end up finishing med school?

I don't know about him.

But many people can "push through" for 1-10 years. Because many of us are "type A" personalities, or even if we're not, we enjoy doing a lot. Some of us were workaholics and if we felt ill, we'd ignore it, and continue working. Push ourselves harder and harder.

We SHOULD stop and rest, but before there were internet ME/CFS groups, we were less likely to know this. Often we were misdiagnosed so we have no clue we're seriously ill. Anyway, after months or years, we crash harder, and probably are forced to stop working full time (or part time).

 

[Lou]

How is that Dr. Jacob Talibeth or whatever his name is is able to work / promote his product from fatigue to fantastic if he has CFS.

He claims he has CFS, but then how did he end up finishing med school?

Just my opinion, but I'd be careful listening to Teitelbaum's advice.

 

[SickOfSickness]

How is that Dr. Jacob Talibeth or whatever his name is is able to work / promote his product from fatigue to fantastic if he has CFS.

He claims he has CFS, but then how did he end up finishing med school?

Also, maybe he was feeling rundown and bad, and "cured" himself with the supplements he recommends.

I think many people attribute their cure to something wrongly. For example they take some expensive new herbal treatment, and think that cured them, but actually they got cured because they moved to a house without mold.

(I don't think lack of mold would cure someone with ME/CFS, or very few, but I can't think of an example, and someone might think they had ME/CFS but they were suffering from mold poisoning.)

Or their improvement/cure was not for any specific reason but their immune system finally got better.

There are so many types of people with ME/CFS too, and sometimes they have good cognitive abilities, just bad physical. Or the other way around. So someone could work at home or do some types of work, if they had a job that fit their remaining abilities.

 

[Antares in NYC]

Hi everyone! I just wanted to drop by and say hi. I'm still standing, but frankly I don't know how I do it.
I haven't posted in these boards since I got a new job, a very demanding gig that's putting me closer to a major crash, but helping with the bills. Things were getting pretty dire at the end of the summer, so I had to bite the bullet. Since September every day has followed the same routine:

• Wake up early, go to the office...
• Work, work, work, then work some more, while hiding my obvious signs of ME/CFS
• Head back home, barely crawling my way up the stairs, crash in the couch, with extreme exhaustion, absolute zero energy.

That's been every day since then. Over the weekends I basically lay in bed on in the couch, with zero energy, recovering from the work week, preparing for the dreaded Monday.

It's good to have an income, since I was drowning in medical bills, but I actually fear I will collapse one of these days, badly. Like really, really bad, which is starting to scare me, sincerely.
I still fantasize of an exit strategy. I'll try to save as much as possible (which is difficult in a city as expensive as NYC) until I can no longer work, and then probably move out. My girlfriend and I have been discussing the idea of actually moving away, far away, somewhere with mountains and clear air, lay low for a couple of years. It sounds nice, but the reality is that I can't afford not to work. Still hoping for a miracle.

I've also been dealing with awful and terrifying secondary ME/CFS problems, including bleeding Crohn's and even scarier results from a CT-Scan. One of my doctors requested more tests, but I've been battling my horrible insurance since they decided not to pay for the last ones. Bastards! Just another headache, on top of dealing with the medical nightmares. What a miserable existence it has turned out to be. Sorry, just venting, not trying to be negative.

Anyway, just wanted to say hi. I miss chatting with the gang here, but I'm too tired at the end of the day to even post. I'll try to keep up here and there. Best regards, everyone.

 

[Marlène]

hello Antares

Hi again, so sad to read you are still in this dreadful situation. If you have Crohn, did you stop eating gluten already? Have you ever heard about low dose naltrexone? Don't you have any medicine at all for your adrenals?

 

[Little Bluestem]

I am glad that you checked in, even though your news is not cheerful.

Could you get a job similar to the one you have now in an other part of the country where the cost of living would be a smaller percent of your salary, even if your salary were smaller? That would allow you to save more money, if you could survive the move.

 

[Antares in NYC]

As expected, I crashed. Major ME/CFS relapse last night. Slept 18 hours straight and I'm basically a zombie, a total mess today, bed-bound, completely depleted of energy, fever, painful and enlarged lymph nodes, extreme fatigue.
I'm heading back to bed. I don't know how long I'll be able to pull this full-time work thing...

 

[Antares in NYC]

hello Antares

Hi again, so sad to read you are still in this dreadful situation. If you have Crohn, did you stop eating gluten already? Have you ever heard about low dose naltrexone? Don't you have any medicine at all for your adrenals?

Hi Marlene,
My gastro doctor performed a number of tests and assessed that I seem to be developing Crohn's, and I'm currently scheduled for more tests in the coming days and weeks. I have not been given a special diet or any restrictions yet. Same for medication. My adrenals look ok.

It seems like my ME/CFS symptoms stayed more or less stable for a few years, but since 2011 my health took a nosedive, and I have experienced all sorts of systemic issues popping up all over (immune issues, recurrent pneumonia, severe stomach issues, worsening brain fog, etc). Among those many issues, I got sudden food intolerances, and episodes of bleeding that appear to be an indication of mild Crohn's, but they are testing me for even scarier stuff. I have a capsule endoscopy in a few days, which we hope will shed light on some of these issues.

 

[Antares in NYC]

I am glad that you checked in, even though your news is not cheerful.

Could you get a job similar to the one you have now in an other part of the country where the cost of living would be a smaller percent of your salary, even if your salary were smaller? That would allow you to save more money, if you could survive the move.

That could be an option, but before I get there, I need to save enough money, and also reduce some of my debt. It's difficult to get ahead in NYC, on account of the cost of living.

Ideally, I would take a couple of years off and move to the countryside, away from the toxic and stressful environment of this city. I feel my current path is not conducive to any healing or improvement if my ME/CFS issues. As I explained, I feel that my current situation will only make things worse. I'm worried. This weekend I had a major crash, and spent the weekend in bed, exhausted, messed up, as a consequence of the awful workload and stress. I'm not sure how long I'll be able to do this, frankly.

 

[Little Bluestem]

Could you reduce your debt faster if you lived somewhere where the cost of living is less? (I am no more a financial adviser that a medical adviser.)

 

[SickOfSickness]

You have warning bells going off like mad. It's expected to feel like you cannot change things yet. It's difficult psychologically and practically but it can be done.

Everyone is different but for every week that you push yourself, you may spend another week or month ill, when you do crash. (And perhaps more than a month.)

A typical healthy person will be bored and unhappy and pitying themselves after one week of a flu. Imagine months of it, with no end in sight. Knowing that you could have prevented months of it.

People are bad at weighing choices when the consequence is months or years away, but most of us on this forum can look back with deep regret.

 

[Tine]

Many heart-wrenching, inspiring stories, let me add this one.

When I got sick in 2004 I was 30, I had just left for the big city to start my (second) career as a designer, needless to say that in a year's time it was very clear that I was not going to make it as I was severe and mostly home/bedbound.

I retired to the countryside to get better, and in the meanwhile I thought: what can I do with half of my brain and mostly bedridden? I had a lot of training in academic research, so I chose that as the easy way (I know it's not), so I started writing academic papers, which I had never written before, cognitive issues in the beginning were pretty bad so I had to wait for days before being able to collect the thoughts to write one sentence, had these little notes everywhere.

Anyway, after 5 papers published, in 2009 I improved quite a bit, and also got awarded a PhD scholarship. The burden was 38 hours per week but in fact nobody checked and I could manage. by paying a fortune to live only 600 meters away from the office and by looking a bit lazy.
Although I always managed to do my job and some more, things didn't end well with that boss and I had to quit.

As I was much better and my daily activity had gone from 6 hours a day to maybe 8/9 hours, I decided to try again with design - I got two part time jobs that I performed ok although struggling but I found looking for clients quite exhausting. I was still trying to find another place to finish my PhD, and I had another bout of bad luck, I found some scammers and got mobbed and blackmailed to do different work instead of my studies.

In the meanwhile it has become clear that in order to have this ghost of a career I had to neglect my social life very dramatically, so I found myself completely alone in the world, no friends, no family, nothing. Also my life had became very formulaic (= boring) because of the ferocious pacing I was holding myself up to. Empty and boring.

Now, 2015, I am experiencing my second relapse since 2011 (8 months already) and it's very clear to me that if I want to have a full life I have to give up on my dreams of professionalism. I got some family business cleared so I luckily can have a little backup income (I don't perceive any benefits), and my plan was to move to a cheaper city and try again with the design only part time, but now all my perspective has changed and it seems more important now to work with people, to improve people's lives, but still I can do much more work sitting/lying down. Also I feel I waste so much time being sick and looking for therapies that I can't become good at what I do. (although my health did improve some, so it was worthwhile)
Creativity used to be ok, but last year on top of the rest I got depression, that is the ultimate killer.
I feel sad that I will never offer a relevant contribution to society, but after all I think this is a kind of snobbery, and I have to give up what my family wanted me to be and what I thought I wanted to be, in order to be... something completely different.

 

[digital dog]

I feel I am a ghost or shadow of the person I am meant to be...the person underneath my health limitations.
This illness should be renamed:
CHRONIC DISAPPOINTMENT SYNDROME
The hoops we have to jump to maintain a grain of normality.
I used to be creative. Went to Cambridge and directed plays.
Was offered the role of assistant head at an excellent school at a very young age.
I am now a supply teacher in dreadful schools one afternoon a week if able.
I used to write. I used to dream. Creativity used to drip out of me.
Now I find it hard to think.
I grieve the person I was. Could be. May never be.

 

[Maria1]

I feel I am a ghost or shadow of the person I am meant to be...the person underneath my health limitations.
This illness should be renamed:
CHRONIC DISAPPOINTMENT SYNDROME
The hoops we have to jump to maintain a grain of normality.
I used to be creative. Went to Cambridge and directed plays.
Was offered the role of assistant head at an excellent school at a very young age.
I am now a supply teacher in dreadful schools one afternoon a week if able.
I used to write. I used to dream. Creativity used to drip out of me.
Now I find it hard to think.
I grieve the person I was. Could be. May never be.

As useless as you feel, you write beautifully. I'd say you still have that creativity and it shines off the page in that post.

We aren't the people we were. This illness steals so much and I sometimes think the hardest part is the intellectual and cognitive damage. Maybe that's because it's that which has stopped me working. I'm lucky not to be bed bound.

I wonder if I could manage the physical demands of a part time job if I paced myself and did nothing else. But my brain functioning is so messed up I can't think of any work I could manage without quickly messing up, even just stacking shelves or doing very menial tasks for a couple of hours a day. I get the easiest things wrong and concentrating brings on PEM as much, if not more than exercise.

I used to revel in multi tasking. Jobs that demanded real mental acrobatics and challenges.

All I can do is concentrate on what I still can do and the fact that I'm alive. Not that it helps anybody else. Even posting is beyond me- I start out saying something and it's gone.

 

[panckage]

I'm a substitute high school teacher. It's pretty much an ideal job for me. The work days are about 6 hours. There are lots of holidays so I probably only work 160 days a year. Also I'm pretty free to take off any day that I want if I'm not feeling well. Kids here are positive and not too naughty. I rarely find the job stressful.

Sometimes I have a bit of trouble making it through the day but ritalin helps a lot in those cases.

It's a bit of a pain having colleagues ask why I don't have a full time position yet. Only a couple of my colleagues know of my illness

Overall though I'm very happy with my work! It's kind of funny though as my last career ended because of permanent RSI injuries to my wrists. In hindsight I am lucky that happened because if I hadn't become a substitute teacher before ME I would probably be unemployed and maybe homeless!

 

[roxie60]

Exactly

I don't know about him.

But many people can "push through" for 1-10 years. Because many of us are "type A" personalities, or even if we're not, we enjoy doing a lot. Some of us were workaholics and if we felt ill, we'd ignore it, and continue working. Push ourselves harder and harder.

We SHOULD stop and rest, but before there were internet ME/CFS groups, we were less likely to know this. Often we were misdiagnosed so we have no clue we're seriously ill. Anyway, after months or years, we crash harder, and probably are forced to stop working full time (or part time).