posted
I'm 14 years into this and just diagnosed with Lyme. I haven't started treatment yet but I've had the same office job for 8 years and I'm finding it more and more difficult to get there and stay all day, I feel I'm getting more ill every day.
How do you cope if you work? I can't leave work, we need the money too bad, not just to live but for treatment too.
I've started to get creative at work, hiding in my cube, saying I threw my back out and that's why I'm limping, etc.
My boss does know that I test positive for Lyme and seems ok with it for now and a handful of co-workers know.
I just wanted input here about working full time with this disease.
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
You sound like me 30 yrs ago-i had it 15 yrs before dx
I had to keep job cuz i hd med ins and husband didnt
I taught pe to inner city kids an hour commute from home
I raised four kids...but my marriage only lasted 13 yrs -i think lyme had a lot to do with that
3 of my kids were dx and treated for lyme
I cant type to tell u all i did to be able towork and treat
But its like you said
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Its like you said...you have to be creative
If you search on here i have explained how i did it before
There are many other posts on here with ideas
Good luck-i will be out of contact for a few days but will check back soon
Others will be along
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Good to see you, don! I'm so sorry you have to work so hard. I don't see how you do it.
justanotherhi...I was already disabled by the time I found out I had had Lyme for 42 yrs. It's no wonder, huh?
I have to admire anyone trying to treat this illness and work at the same time.
Gotta hand it to you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Your job should be protected under FMLA. If you find yourself missing time at work because of your illness or doctor appointments, you might want to look into this.
Does your workplace offer temporary disability? Just info to know in case you need it.
Take good care....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes I do.
I need to work full time for my medical benefits to pay for my prescriptions and the money to afford to survive and buy all the probiotics and for my treatment costs and supplies.
It is very hard most days. I am up at 5am.
When I get home I climb in my pajamas and stay awake long enough to take my abx, and then I stay upright asleep for 2 hours. Then I take my probiotics. Then go to bed.
My life very much revolves around medication scheduling now. Haha.
I don't set any goals or to-do's on the days I work. Too exhausted.
I am home sick from lyme flare about 4 days a month. My coworkers are very understanding. My union and boss support me phoning in on those days.
I am very grateful and very blessed for a work environment and coworkers and boss who have big hearts and compassion.
But it is still very difficult to go to work every day.
It helps to be stubborn. Finally one of my "worse" personality traits is paying off.
Just worry about each day. And if that's too tough, tell yourself to go another hour and reasses. Before you know it, the work day will be over.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
It's good to hear from others that work. I'm up at 5:00 and lately have to drag myself into work.
The pain is bad sometimes but I don't want to be a drag a talk about it all the time so I pretend I'm ok to my co-workers.
Being chronically ill is the pits. I have co-workers that know what I have but every day ask "are you feeling better today?" Like it's the flu or something. And I hate saying "not really" over and over again.
I hope my boss is understanding, I haven't started treatment yet, back to LLMD in a couple of weeks. Once treatment starts I fear I'll get worse and miss days, I'm afraid of Herx which I've only read about.
I'll check out FMLA. My problem is that I make more at work than on disability. When I went through Chemo 2 years ago for ovarian cancer I worked through it, off just a couple of days here and there but never went on disability.
I really wish I didn't have to work, it's more than physical pain, it's the pressure of people counting on me...from my family counting on my paycheck to my work counting on me to fulfill my duties.
Anyway...just venting.
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I dont know what fmla is but i would be careful
Many of us learned the hard way to keep quiet about lyme and just do what you gotta do to get thru the day
Get your support here...not at work in most cases
I remember my rule was if i could walk without a cane after my shower i would go to work
I never could walk alone to the shower-but immediate crackers and ibuprofen and the hot shower usually got me to work
And i taught pe. I remember being paralyzed for part of the day and figuring out how to pretend staying in that spit was all part of the plan
I remember falling off a stool while sitting cuz of vertigo and pretending i did it on purpose-good they were kindergarteners-they thoght it was funny
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
lpkayak, you're awesome. Now I've been DX but before that not knowing what was wrong I told people I'm a "leaner" cuz I leaned on everything to keep from falling over with dizziness.
Sometimes I would need to go to the restroom very quickly "excuse me!" just to get away from a conversation in the hallway because I thought I would pass out or fall over.
It's an art, I tell ya.
I agree to keep it on the down-low and keep on doing what I have been, just putting one foot in front of the other like Just Don said. It's controversial and most people can't understand what we go through.
You all are amazing, glad I found this place (and found out what I have after all of these years of not knowing)
Posts: 17 | From Santa Clarita, CA | Registered: Sep 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
You sound like a smart, tough person. You'll make it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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