What do people do for work? (Job/Career Change)

I realize many of us don't work. I have been out of work for four months as I regressed badly this spring. I was not treating with my LLMD at that point. I have went back to my LLMD and have started treating again. I still have rough periods but I'm doing better in a general sense though and I'm just about ready to start earning money again.

I'm not a big fan of my current career. I would be looking to change even if I wasn't sick. My job is very regimented and structured. Being sick I am looking for the opposite of that lol. Has anyone changed jobs/careers once they got sick? What did you do? Did it work out?

Thanks for reading!

I am software architect/developer mainly Microsoft technologies. TBD has been a big blow to my career.

I am in my late 40s, and worked all my life in software, so now with the challenges with TBD not sure too how long i can keep goin in the rat race of software. i am fortunate in that i work remotely most of the time, but deadlines, conference calls, needing clarity to think through technical involved problems has been hard since i returned to work from STD.

I've been off work for 5 years now.


My job needs a great attention to detail and excellent working memory....hoping i can get back to work in a few months.

I am stressed thinking about going back...not just because of the job being extremely stressful...but I will need 5 weeks of training...to cover the changes...along with what I may have forgotten.
It will feel really strange going back...and not looking forward to explaining to all the co-workers why I was away so long. I know which ones will be the non-believers.

Asked myself this question many times, this forum too in the past.

I've worked with lyme for 25-30 years full-time and part-time, in addition to being a student and weekend traveling athlete for about half of that, some very struggling times and some good times.

Have lyme longer than most here, but I was pretty functional (until 2008 or so) as I managed it, learned my limitations and tried best to work around them. This meant leaving some jobs in search of a better fit. **I had daily flex time in some jobs which was perfect- 2 hour arrival window and lunch when and how long I wanted it. Having projects as opposed to daily tasks can allow this **. Being punctual while ill is hard and stressful.

In any job search, people need to tailor thier search to match what they can and cant do. Lyme or other illnesses just make this more obvious with limitations. Everyone has limitations, despite the current trend in what society tries to tell us - in the same thinking as the "participation award".

Remember, the same job differs in different companies too.

Best to concentrate on what you can do everyday, with some variety thrown in. You might not know till the interview. This viewpoint allows for more variety of jobs/careers to, vs one type. The more specialized one is, or the more money one seeks, the more difficult to find a fit.

Ive been in blue collar mechanics, white collar sales, design/ engineering, to wearing a lab coat in the sciences. Only job had travel, and it was only regional with a somewhat flexible schedule. I used a college science degree, a technical school cert/diploma, a specialized technical license and "born with skills" to get me by.

****All my different jobs had some relation to a previous job and / or something I have done/knew about in my personal life.****

Passed up many position that I knew would not be a good fit. Plus the added income of some more stressful jobs even if I can do them is just not worth it. Live simple, or try to.

I think the more type of jobs people have had, the easier this is to transition to something new. Variety is good, unless your company is "old school" with pension ect- those are going away fast.

Post Edited (astroman) : 9/16/2018 4:22:05 PM (GMT-6)

I have not been able to hold down work for 3-4 years. Or if I do, I have to quit or get fired or lose the freelancing opportunity. I am barely able to function on my farm lots of dead plants right now. For whatever reason, the Springtime I am dramatically energetic and use that time to work on my farm. With automatic timers and "just let it go" mentality, I am able to do small things on the farm. I have to set one goal per day, or just rest all until I have a good day.

However since my last LLND visit I have had a dramatic turn of events and all my neurological symptoms have gone away. I am very opportunistic and looking for work that I can commit to 3-4 days a week, with the ability to take 1-2 week breaks. Not sure what is going to be out there for me.

Suprisingly I saw the the latest Lyme recommendations that they were, at one point, considering job protection legistilation for people suffering with Lyme. LOL, old me (pre-lyme), I would never hire anybody with Lyme if I knew they would just suddenly disappear and I had to pay them. Now If I had the resources, i would help them pay for doctor visits/herbs/medicines.

As you know with lyme or at least with me, you get these periods of sudden energy and relief, sometimes for two or three weeks. Then it all comes roaring back. And even if you feel "good" enough for work, there are days when you have herx or relapse, sometimes lasting for weeks. I have had this since my last drammatic turn of events. But everytime I go through a setback, since my drammatic improvement of events, I feel that I am improving 1-2% where as last year it was the opposite of progress. This year I am able to occasionally bend over and lift things. I am not able to jog, but I can walk for 20-30 minutes. I think if I can keep this 1-2% improvement eventually I can commit to a job and figure out a way to manage the disease.

My goal is to get a job to be able to afford my current protocol and doctor visits, catch up on bills, and then ask my LLND if we can try the Dr. Horowitz protocol posted the other day -- after we get rid of all the other co-infections which might be 6-9 months or even a year.

If I had a million dollars I would pay my LLND to take training from Dr. Horowitz and also in his video his idea of a "lyme center" I would try to get LLMD (banned in oregon) but LLND to open one of his "lyme centers" (his idea in the video) in Oregon and give away all herbs I could legally do grown on my farm.

astroman said...

I think the more type of jobs people have had, the easier this is to transition to something new. Variety is good, unless your company is "old school" with pension ect- those are going away fast.

My "company" is the military so there is a pension but as you might imagine being sick with Lyme doesn't jive well with being sick with Lyme. I know my career is over. Even if I wanted to stay and make it a career I wouldn't be able to in my current state. I'm over being in the military. It was a great experience but it definitely doesn't fit my personality. I'm ready to move on.

I'll be looking for jobs and careers that provide autonomy and flexibility. I'm just not sure where to start.

JayPoppa said...
How anyone holds down a job with Lyme disease is a mystery to me. Personally I've been housebound for the past two years. With months of the time being bed bound. I don't understand how these people with Lyme do it. I don't know maybe some are more severe than others. So anyone reading this just be thankful if you can work. Some of us are barely making it out of the bed.

Sorry to hear you’ve suffered so much JayPoppa.

I hear some people who say they “had” to work - had no choice - but I can tell you that there was no way I could have worked - even if I gave up my job for a job less demanding - like a clothing store clerk. Before treatment things were really bad for me.

I can sympathize JayPoppa.
And yes there are more severe cases.
I think I have it bad and then I see/hear about someone who is having seizures or is so fatigued they can’t get out of bed and I realize it could be worse for me.

On my good days I could work at an “easier” job but how do I predict the good days? So I call in sick once or twice a week?

And if I was to take a less demanding job - my current employer could terminate me.

Lymie24 said...

astroman said...

I think the more type of jobs people have had, the easier this is to transition to something new. Variety is good, unless your company is "old school" with pension ect- those are going away fast.

My "company" is the military so there is a pension but as you might imagine being sick with Lyme doesn't jive well with being sick with Lyme. I know my career is over. Even if I wanted to stay and make it a career I wouldn't be able to in my current state. I'm over being in the military. It was a great experience but it definitely doesn't fit my personality. I'm ready to move on.

I'll be looking for jobs and careers that provide autonomy and flexibility. I'm just not sure where to start.

Many companies like military background. Autonomy and flexibility can be a blessing, many careers that are project based and minimal to no customer face time have this. You still have a time line but its out there a ways, day to day stuff isn't so concrete. As long as it gets done at the end in a satisfactory manner is what matters.

Cant tell you how many times flex time made it possible to nap in my car on an extended off work lunch, came back very refreshed. Drank way to much caffeine and Red Bull to make it though the day many times only to crash on the couch the min I got home- or on the drive home in some parking lot.

And look out for micro managers- they have issues. I have actually asked "whats your managing style" in the interview. A MM will not like this question, and will get around it. A non micro-manager will tell you they dont micro-manage, because they don't like it either and know what your question really was about.

Self employment - as long as its not retail is pretty flexible too. Health insurance cost just makes that harder today though. I did that some years.

Post Edited (astroman) : 9/16/2018 8:59:17 PM (GMT-6)

JayPoppa said...

Girlie said...

JayPoppa said...
How anyone holds down a job with Lyme disease is a mystery to me. Personally I've been housebound for the past two years. With months of the time being bed bound. I don't understand how these people with Lyme do it. I don't know maybe some are more severe than others. So anyone reading this just be thankful if you can work. Some of us are barely making it out of the bed.

Sorry to hear you’ve suffered so much JayPoppa.

I hear some people who say they “had” to work - had no choice - but I can tell you that there was no way I could have worked - even if I gave up my job for a job less demanding - like a clothing store clerk. Before treatment things were really bad for me.

I can sympathize JayPoppa.
And yes there are more severe cases.
I think I have it bad and then I see/hear about someone who is having seizures or is so fatigued they can’t get out of bed and I realize it could be worse for me.

On my good days I could work at an “easier” job but how do I predict the good days? So I call in sick once or twice a week?

And if I was to take a less demanding job - my current employer could terminate me.

I hear ya. Even if I had to work I couldn't. Not long ago I spent about a two month period being able to barely move my arms or legs. I'm in the process of trying to get Supplemental income but it's not looking so great. If it wasn't for my family I'd be dead or homeless. So when i read posts about people talking about working it confuses me. I mean why do some people get disabled with Lyme disease and others are able to work and carry on semi normal lives?

Hi Jay, I'm sorry you are going through such a rough time. I hope you see some improvement soon. If you don't mind me asking what all do you have? (Lyme, bart, babs, EBV, MCAD, etc.). Are you seeing an LLMD?

After being around this disease for three years now I totally agree that there people are affected at different levels of severity. It's probably a lot more complicated than we even know. My guess is it has to do with our genetics and the way our bodily systems are wired. This isn't related to Lyme necessarily and is only an anecdote but one of my best friends has abused alcohol for about 13 years. We would both binge drink only the weekends in college sometimes (okay, a lot of times), however as we got older he never really slowed down. His idea of light drinking is 12-16 bud lights around a fire. He also is an outdoorsman. He has had more ticks on him than could be counted. I find it hard to believe that has has never obtained any borrelia, bart, or babs bacteria. Yet, he has never been sick from a TBI and he really never really gets sick period. He gets up to early and stays up to late. Yet he remains perfectly healthy. How does this happen?

https://www.sciencedaily.com/releases/2003/06/030624090043.htm

Here's a study about how people experience pain differently. There are some theories about why but nothing scientifically concrete yet it seems.

I worked full time for over two years with varying levels of functionality. I had to have an extreme routine however. I had to have access to anti-inflammatory foods. I had to be able to do light-moderate exercise when I had good days. I had to get enough sleep. That never worked as I had to get up at 5:30 a.m. and once a month I worked 12 days in a row. Basically half the month. I had to do epsom salt baths and use the sauna. My life was so regimented by my diet, exercise, and detox routine that I immediately would fall off the wagon if I didn't do these things. That's the only way I maintained my job.

I think my breaking point a few months ago was just as much mental as physical. I was doing Buhner protocol. I was not treating with my LLMD at all. No antibiotics. After about 4 months on that protocol I relapsed HARD. I felt as sick as I ever have dealing with this stuff. That shook me emotionally. I told my wife and my parents that for the first time in my life I could understand how one could take their own life. I wasn't suicidal but I also knew I could not live the rest of my life like this. I started to become depressed. That's when I threw my hands up, went back to my LLMD and told him I am his and I am in it for the long haul. I knew my job was keeping me sick through it's environment and furthermore I did not enjoy my job at all which made the emotional aspect even worse.

Noah2112 said...
There are many people for whom a single round of antibiotics does work, as well. My LLMD tells me that everyone responds to these infections differently, and he suspects that coinfections are behind the majority of people who are ill long term. Typically people who only have one illness can fight it off with the right medicine and some time. Others have to fight longer and harder, but we can do it.

A single round meaning a few weeks ? Not for chronic lyme unless it's followed up with another treatment protocol. i've not heard of one person putting lyme and co's into remission with a few weeks of antibiotics.

NotQuiteAntonio said...
I’m a crapty nurse, working nights.

I’d call myself fortunate, but I don’t know. I forced myself out the house and worked hard in school, despite my shortcomings, telling myself I’d fail all the while. I didn’t fail, somehow. Will and good fortune.

I wouldn’t say I’m healed either. I can make sentences and move around. I’m not amazing critical-thinker with a rock-steady memory. I don’t work in a high-stress environment either. I would not trust myself working in ED, ICU, or psych. That’s what is nice about nursing: there can be different options as far as setting, and not all of them are these high intensity situations, like you’d see on TV.

I’m not the worst, but my health is definitely on uncertain grounds. I require treatment from multiple angles to get better. Though, the issue is finding the time and money. But, yeah. I don’t know. I’m divided on how to word it.

My symptoms have always been largely neurological, the mental, and spiritual. I’m fortunate in that my mobility hasn’t gone (yet). But, on the other hand, it has been 10 years, I’m still relatively young, and I can’t afford to not live a “normal” life. Maybe I’m in a little better health, but maybe I’ve also had to adapt and live with what I’ve got? I get down, days worse than the rest, but I’ve put pressures on myself that I can’t skip out on, whether due to financial reasons or just personal, like work or school (screw being a dropout, Lyme already made me do that once). I went through the terrified at every symptom, struggling to find the answers, giving up on life once I did and realized the gravity, not showering or going outside sort of phase, which I feel is an understandable and even necessary part of it.

Though, speaking of adapting to it, I’ve been having a lot of trouble lately accepting things, because I don’t feel this is my life’s purpose. I used to have such a voice for writing, but I’m not in tune with it anymore. I haven’t been since I got sick. Though, these past couple years, there’s been a growing urge inside of me to make something, but I can’t say what. I just feel it, swelling. It feels trapped. It’s so uncomfortable. I’m always thinking about suicide.

Compromise is a part of life. Sometimes, you’ve got to settle. Give your dreams every shot you’ve got, but things are unfair, there will always be limitations, and that’s just a given. Plus, it could always be worse, I tel myself.

I realize those things. Though, it’s difficult not to complain. It’s hard not to feel like I’m wasting my potential, being of this brain and body. My spirit, or, you know, the underlying currents of whatever it is that make up my personality, they have so much more to offer. You understand, I’m sure.

Oh well. I’ll probably live another year. Maybe 10. You keep telling yourself, “you’ll get better, your fire will return,” but you never really know. Feels like I’m wasting time.

I know what you mean about feeling trapped. But I think the fact that you feel trapped means at least you are yourself enough to realize you feel that way. It's really hard when you just don't know if you will get better or not.

I didn't know that I would start feeling better and be able to go back to school. Now my problem is, what kind of job am I looking for? I can't sit all day, but I have awful small motor coordination-so I'm not about to do anything that requires having to assemble small pieces.

I have a friend whose wants to study to be a nurse, and I know I could never be one. Also anything in the health field, they make you get vaccines every year, which I can't do.

Work? HOW in the world can a chronically ill person work? Oh geez....

I sleep 10-12 hours, get fatigued just fixing breakfast, taking a shower, maybe fold a load of laundry> then im Done!!!

Well, then theres those surprise week long WOW Im able to go, go go weeks.

What prevents me from my volunteer work is my inability to control emotions. I have major dspressive disorder, dont You ALL? How do you manage work?

Im jealous

I work in full-time in manufacturing, which can be very repetitious, but have been at my company for 10+ years so I am trained in many departments. Shortly after I got Lyme/bart, finished my Associate's degree (that was a challenge with Lyme) and put in for an Engineering tech position (so that I don't have to do as many repetitive tasks, and can walk around the building vs sitting for prolonged periods which cause my joints to feel stiff). For a long time it was a challenge to get though the day but it was better than the alternative (working in one dept all day). Around the same time, I also found a Naturopath group in my area, and started treatment with them so that has helped me greatly.
I know that many people cannot work, and I am thankful that I can. Before I started treatment with my Naturopath, many days all I had energy to do was struggle through the work day....but knowing that I had to work was motivation to leave the house and although I was depressed, I feel it would have been much worse if I didn't have the obligation to work and to collaborate with coworkers.