having a job with lyme and bartonella

lymebarthiker,

I have a job, and a physical one at that. I guess I am lucky in the fact that I've been able to work almost the whole time I have been ill. Also I am more Bart dominant than Lyme actually, so I know how you feel. I am self employed so I suppose I that's how I haven't gotten fired, although I'd like to fire myself some days haha. I just grit out the discomfort and keep working.

Do you enjoy your job? Is it a part of your life or "just a job"? I guess I just ask this because for me to stop working would be like killing me anyways. Can you work part time or is it non flexible?

If it were me, I would try to work as much as you can reasonably manage, whether that's 5 hours a week or 40 hours a week. It relieves some of the stress of the financial burden this disease puts on all of us and gives you some normalcy back to your life. This is only my suggestion and you have to make the decision you feel is best. Hope this helps.

LC

I lost my 20 year career last Fall. I tried for 3 or more years to keep working I spite of symps until they impacted my daily performance. I would have tried since I was 15 months from retirement with health care. I just could not will my body yhrh it anymore

Unfortunately I can't work for myself or at a desk. I am looking to work customer service something easy like Walgreens, world market, or family dollar.

My biggest concern is having my neurological shocks happen during work which end up making me sick. I think I will try to work because being out of the house makes me feel good

And the extra income will help me to not be so worried about treatment. With doctors visits prescriptions and supplements this is turning out to be one super expensive bug bite.

I will be getting insurance soon but I am sure it will be useless to an llmd since they never accept insurance anyways.

I've been trying to listen to my body lately but one minute I feel better and the next minute I have a icepick headache and tense neck.

Bartonella is the moodiest bug on the planet.

Yes, I work and its more like 60 hours a week. I work in a printing industry. I hate my job with a passion.
When I was at my worst my husband sent me back to work. I would get to work and the anxiety would hit, and i would cry and cry. My husband just figured if i got out and did something it would be better than sitting at home feeling sorry for myself. When were busy its 7 days a wk, and a few 12 hours. Believe me its very hard on me, I'm around solvent, ink and a bunch of other chemicals that aren't good for you. I want to quit so bad, the money is very good, just don't think I can find another job that pays as well. My husband said I can quit butttttttt., I need to find another job first so I will find another job even tho it won't pay as well. I would like to work at a fitness place, got an application but I don't think they will hire me. I just feel like I won't ever get better working where I do.. When I was doing acupucture the guy told me my liver is struggling, got a massage they told me my liver was struggling. Its just a vicious cycle, work or no money for treatment................

I am struggling to find work where I am at. 50k a year would be insane for me. I'm going to have to settle with 8.00 dollars an hour.

I want to try and work as much as possible.

Moon61 I would say you should probably not work at a place that is making your body suffer and your husband clearly does not understand the strain this disease puts on you.

You are all so strong and all of your comments are pushing me to have the strength and courage to start work again. I an scared but I will try.

I somehow held onto my job.  Not really sure how but I did.  In the peak of my illness I was so sick that I thought I had to quit because I was so sick.  I just told my boss that I wasn't feeling well, and so I just sat down in my office and rested while I recovered from the herxing.  Every now and then I would push myself to do this or that.  But I hung in there, treated... And now I'm back to being a highly productive employee once again!  I simply told my leaders that I wasn't feeling good and had a systemic bacterial infection.  They said okay so you are seeing the right doctors and taking the medicine needed to fight this?  I was like yup I'm on it!

I've been sick (undiagnosed) for nearly 10 years, so I have been able to keep my life-- college and now a job. I just didn't have any other choice because I was told nothing was wrong with me so I was expected to carry on a normal life. I have a high pain tolerance and am very tough.

There are days when I'm definitely mentally not all here but I am a very good actor at this point.

I resigned from a 15 year career in Oct. 2013. I had built up 600 hours of sick time and in the last two years that I worked there, I ran my sick time down to 40 hours. If it wasn't doctor appts, it was illness due to my virtually non-existent immune system. In 2013 alone, I had: pneumonia, whooping cough, rotavirus, the "regular" flu twice, and probably a half-dozen sinus / ear infections. All suffered through without the "convenience" of antibiotics, which I am allergic to (!!!). :(

I informed my supervisors when I was first diagnosed three years earlier. I even had my doc's call and speak directly to my supervisor (b/c for some weird reason, people often don't believe me when I say I'm sick... apparently, I'm one of those who "looks fine"). I thought, keeping supervisors "in the loop" would make a positive difference. But, in the end, I recall my supervisor once saying, "....it's always something..." ***hole. Ahem.

Finally, toward the end of my last week there, a coworker initiated yet another "dispute" about my accessibility (due to the aforementioned doc appts and illness). That's putting it nicely. :) I kept my cool that day but, did a lot of thinking over the following weekend. By the time Sunday evening rolled around, I knew I couldn't stomach working there even one more day. I knew I had to make my health my number one priority before lyme & company killed me. Called my supervisor's supervisor, asked him to meet me at the office so that I could clean out my cubicle and resign. He was dumbfounded but, very understanding and empathetic (unlike my immediate supervisor - who thankfully was out of town).

I took a lump sum distribution of my 401k money, moved back into my parents spare bedroom, and am tending to my health and attempting to make a living being self-employed.

I've been fighting lyme for approximately 10 years now. It's been really bad for the last three.

I worked two jobs for the last 12 years. One as a project manager and senior estimator for a large construction company and the other was my own recording business.

Unfortunately, I had to give up the recording business. Most of our work was at large music festivals where putting in 80 hour weekends was not uncommon. Between the physical nature of this and me barely being able to walk 100 yards without feeling like I just ran the mile, the long hours, and the god awful tinnitus I have from Lyme, this part of my life has gone by the wayside. I hope to pick it back up once I am feeling better. Music just sounds like noise to me now and I miss it terribly.

The project manager position is a challenge to say the least. I have 17 vacation days per year after 12 years of service and they are used for sick days. The fatigue I can deal with by taking naps in my office at lunch or catching a few minutes behind closed doors when I have a "conference call". The brain fog is awful. My google calendar and constant email reminders pretty much saves my job. I also use a large desktop calendar to hide a mountain of postit notes. Most of my contact with customers has moved from phone calls, to email so I am able to read, and rerread each correspondence before it goes out to make sure its correct and makes sense. If my employer knew the degree to which I had to go to keep things straight on any given day, I have no doubt I would be let go. Being responsible for millions of dollars worth of sales is not something I am comfortable with right now, but with my wife being unemployed and the medical bills piling up, I just plan on continuing until my system fails and I make a big mistake that costs me my job. I am praying that I start feeling better before that happens.

I hope you can find some type of work that allows you to stay home. My friend with Lyme just became unable to continue working and found a great gig with a company that offers tech support over the phone. She basically tells them which hours to forward calls to her and she works from her couch. There is always a solution to the problem I guess. Finding it can be difficult at times.

I used to work and go to school before I got bit but can't imagine doing that at this moment anyway because my doom feelings and anxiety are way too bad and the I only thing I can think about is if my illness is going to kill me or if I will be like this forever, sorry to sound depressing but I can't get those off my mind and it flares up my anxiety and dp/dr real bad so yea I can't work or go to school at the moment but I am hoping too soon.