Forgive me if this has already been discussed. I got bit last year, two months of graduating college. I haven't been able to work since, but am at the point where I am going to have to go back full time. Wondering how you do it? Did it help to get your mind off Lyme or make things worse? Need some encouragement.
Posted by aperture (Member # 34822) on :
Listen to your body.
Posted by Larae30 (Member # 35220) on :
I just started a new job last week (I graduated last December with my doctorate). It is going okay, it's def. tough, but I've been able to manage. I have to work in order to live and attempt to pay for all of my medical costs and I am going to have to start paying back loans soon too, so I don't have a choice about working...
If I was younger, I would think abt just living with a family member or something until I got better, but I have too many financial obligations to do that now at my age and I have a very supportive fiance, thank goodness.
I am an occupational therapist and work in a rehab center mostly with older people and working with patients helps take my mind off of lyme. If I weren't busy, I would prob feel worse at work too.
Like aperture said though, you've got to listen to your body for sure.
Posted by finallylyme (Member # 33807) on :
I work 36 to 40 hours a week. I alternate 6 hour days with 9 to 10 hour days. If I work 3 8+ hour days in a row I'm barely able to make it to the end of the 3rd day. If I don't work I can't treat my Lyme so that keeps me going. I've also noticed getting out and doing something every day actually helps my fatigue if I'm careful not to over do it.
Posted by fatherguido (Member # 25266) on :
Doing a lot of the little things we know to do adds up to something bigger. Supplements, diet, mild exercise, etc. I am guessing this is already being done.
My LLMD told me on my first office visit the biggest factors to feeling better are to remove the stressors from your life (easier said than done) and get a sound night of sleep. If you have anxiety/anger issues (I did), that also needs addressed to take the edge off temporarily.
Rely on family and friends to help out with household stuff to save your energy. Who has time to do this stuff after work when really sick.
My manager was very sympathetic to what I was experiencing the first two months of treatment which was absolute misery. I felt like calling off most days in the beginning but usually went to work anyway. Only 4-5 days were called off sick that year which really impressed my boss and it very easily could have went the other way. A couple of annoying coworkers would get a disclaimer if I had a monster headache that day and back off from their antics.
I set short and longer term goals for myself such as attending a particular event knowing my health had to be at a certain point.
Listen to your body seems to be the consensus. I would add try to do some enjoyable things you WANT to do rather than the stuff you HAVE to do. It is not all physical with the illness.
Posted by JeniferM (Member # 31996) on :
I work full-time but I end up taking a couple of days off every 2 to 3 weeks when the symptoms flare up. I also hang on to a bunch of more brainless tasks that I can do when the brain fog hits and I can't think very logically. There were many times where I've built something and then came back to it later wondering what the heck I was thinking at the time. yeesh
12 years ago I lost the job I had at the time because of fatigue. Hopefully the job you take on will be sympathetic to your needs.
Also, I've found taking on stressful (or active) jobs makes it all very much worse than anything. It would be better for me to not work than to become a twitching basket case (if you could afford it). Although, I still have many days like that... Sometimes I feel like an over-bred small dog that just sits there twitching and flinches at everything. hehehe
From the Lion King movie... "scurry, sniff, flinch!"
Posted by WheelWatcher (Member # 34223) on :
Im working full time too, im just in the process of opening my own practice as an independent speech therapist in the hopes that i can have more control over my schedule as well as make enough to pay for medical costs.
I wont lie, i have been totally exhausted by my job and i have done a bad job of taking care of myself. I work mostly with kids with severe disabilities and it completely drains me.
I have learned to just accept that my house will always be a disaster. It is hard to not have energy to do anything much outside of work, but i feel i am lucky i do have the energy to work, and to have the opportunity tomwork for myself now!
Posted by agmorgan (Member # 36230) on :
I am in awe of all of you. Thanks for the replies. I'm going to give up my dream career for now and try and find something that is not too demanding.
Posted by tricia386 (Member # 29623) on :
I have to work full time, otherwise I could not be able to afford treatment. I do have FMLA so I call in once every 2 weeks. I have a desk job so its not real demanding.
But it sucks like days like today I am herxing pretty bad. And its late night here So I am stuck here till 7. Cant wait to get home to my epsom salt bath.
Posted by Nicole_Denise (Member # 20620) on :
I just graduated and had to start a full time job to make money. i know I would get better faster if I didn't have the stress of working, but I don't have a choice. I focus on reducing stress as much as I can outside of work. Forget about cleaning most days. If I have to go straight to bed after work, I do. And I had to drop my social life to make room for sleeping and work.
It sucks when you have a bad day, but on good days it can make you feel almost human again to actually be talking to people and doing "normal" things.
Posted by lpkayak (Member # 5230) on :
i was a teacher and found if i pulsed...took heavy meds fri, sat, sun then i was pretty good by noon on mon-oktes,wed,thurs and ol fri morning...
also sometimes took a day off when there were 2 full weeks in a row without vacation days
most impt for me was nystatin, diflucan and probiotics and sbc cuz bathroom was not always available
Posted by Bitten in Bergen (Member # 34067) on :
I've been working full-time through all of this - had lyme/babesia FOR YEARS, didn't know it, and struggled to manage. I was the sole breadwinner because my spouse was disabled (fatigue, pain, cognitive issues) but we couldn't get a definitive diagnosis for either of us.
But things got totally out of control once I was finally diagnosed last year - along with my entire family.
I've struggled to hold everything together since then, but things have recently gotten a bit more complicated with my spouse's lyme/babs treatment. So I finally decided to put in for some intermittent FMLA. Am keeping my fingers crossed that it will be approved. I've been running on empty and I can't be all things to all people any longer - I'm burned out and need to SLOW DOWN.
For anyone who is fortunate to have family or friends they can get help from, use it - unfortunately, we have no one and can't afford to hire help.
Some larger companies do offer short or long-term disability depending on how long you've been employed - again, a great benefit to take advantage of if you need that downtime to get back to your health.