Working with Lyme..

i've been working with this horrid illness for 3 years. no idea how i do it. my boss is cool enough to allow me to work from home 1 day a week and work around my "illness surges" throughout the week but its no picnic regardless. if i have to get another job i'm going to be in big trouble and i'm the sole breadwinner in my household.

lyme and its nasty buddies don't care who you are, what you look like, how much money you have, how famous you are or how important it is not to be sick. it destroys everything indiscriminately.

I'm not sure they will go for it...but I'm going to ask. I feel the worst in the morning. So I was thinking 11-5. Instead of my normal 8-9 hour shift. It's just too much. We see like 60+ patients a day. :/ I can barely stand.

I feel for you sweetie, I could not get up for any reason. I see my husband off to work, then go back to bed for 4 hours. All this after I usually lay awake for 4 hours between 2am to 6am. Really screwed up!

I work full-time, but I'm lucky to work from home. I'm in Healthcare and work in Technical Support. Despite working from home, there are days when I feel like I won't make it.

Three years ago, when I felt like I was going to have a nervous breakdown, I took a month of unpaid leave, through the Family and Medical Leave Act (FMLA).

This year, I submitted another FMLA request and was approved for two months. This time, however, I was paid 100% of my salary through my Short-Term Disability (STD) benefits.

In both cases, my Doctor had to complete and submit the FMLA/STD paperwork I received from my employer.

Look into this as an option for yourself.

I work everyday. I’m a teacher from 730 to 220 then I coach soccer right after. I’m non stop til 6 at night then I come home and have 2 small kids to take care of. I have no idea how I do it or how I function. I’m like on auto pilot. All I know is this totally sucks

I work part time at a group home, go to school full time, and spend the remainder of my time with my toddler. Oh how I wish I could quit my job!

I work full-time. I'm a single mom and without my income our lives would be completely different. I work at home 1-2 days a week as I have a big commute. In the office, I close my door and take a quick nap if I need to. If it gets really stressful, I go for a walk. I think the fact that I "have" to work as opposed to "want" to keeps me going.

I work for my local cable company. Don't kill me! I work with hospitals and hotels in coordinating and installing video, internet, and phone services.


I have taken more time off than usual due to doctor's appointments. But, so far, I've been able to power through the days. It's when I get home to a tired wife that things get really tough. Not sure she fully understands that ill effects of this disease. However, I do what I can when I get home because i know her job isn't easy. I just need a break sometimes, though. And the times I need them do not seem to be very good times.

BTW... did I mention we are in the middle of selling our house. Ugh!!

I"m a full time teacher too. For the most part, my energy is okay, however, I've noticed stress really impacts my symptoms. Also, I pretty much come home every night and am on the couch, weekends I have a hard time getting myself to do anything, and about every other weekend I'm feeling crappy enough that I CAN'T do anything other than sit on the couch. I wish I could afford a cleaning service!! I think that would help!!!

I got sick 9/2106 and melted down with extreme fatigue, brain fog, anxiety, insomnia........... I'm the sole breadwinner of the family. Thankfully I had good disability insurance as I was too sick to work until 8/2017. After a month back to work, I decided to retire a year earlier than planned. So now, I do per diem on call work about 4-10 hours a week, though some weeks not at all. I only work when I want to. I'm a speech therapist and demand for my services exceeds supply. I suppose I could work full time if I had to, but I don't have to so screw it. I can't tolerate stress like I used to.

I have been doing a lot of physical labor in my yard and that feels good. Always puttering. Being outside is therapeutic for me. I used to enjoy my interactions with peers at work, I always had a good, witty sense of humor and kept them laughing. I'm no fun anymore. I'm grateful to be getting better for sure, but often feel trapped inside a bubble, separate from the rest of humanity. Fluorescent light make it worse.

I feel for you all that are basically working with a gun to your head. God bless you. Hang in there, you're stronger than you know.

Temperance said...
I am wondering if anyone has experienced a long period of remission (even if not 100%) and then returned to work part-time and what that was like?

For the past year I have had a great job that allows me to sleep during the overnight shift (about 6 hours) as back up emergency support and then 5am-7:30 do some light work before leaving. While it has been a great opportunity it is a very low paying position and I am not being offered a new job that is somewhat high stress and will require my full attention 2-3 days per week. I am concerned about not being able to fulfill my responsibilities with the new work but my overall quality of living and financial stress will be gone!

I've had Lyme for 10 years, diagnosed 4 years ago, was treated by an LLMD for a year and half until he passed away unexpectedly. My treatment was never fully completed so I have managed on my own with some alternative therapy treatments. I would say I function at about 75% compared to my fully healthy self.

Any thoughts or suggestions?

Hi Temperance - welcome to our community!

Have you thought about seeking out another LLMD and continuing treatment? Sorry, you didn't ask about this...but just thought I'd mention it.

Is it possible for you to try the new job...and be able to return to the other job if it doesn't work out?

I work as a business analyst/software developer. It is super stressful, but I am lucky that I mostly sit the whole day.

I have no idea how I do it. Some days I can barely find the energy to get out of bed and get my clothes on. I live downtown in a city so getting to and from work is not always easy. Then when I get to work, some days my brain fog is so bad I can barely read.. I have to really really concentrate on what I am doing. By the time I get home all I can do is lay on the couch.

It seemed to be a little better during the summer.. but since starting to hit babesia with mepron it seems like I am back to square one all over again. Very very weak, brain fog, fatigue, etc.

My boss told me that I could get short term disability, but I fear that I will need it even more at some point so I feel like I just need to keep pushing. Her daughter has a rare autoimmune disease, so she gets chronic illness which is good.

The biggest downfall to my job when I am so sick is that I travel overseas a lot. In February I have to go to Italy for two weeks by myself to implement new software at one of our facilities. With each software rollout (every 3 months) I always think "eh I should be better by then..."