posted
I am wondering how many of you have been treating Lyme and working at the same time. I have probably had Lyme over twenty years and I have been lucky enough to keep working all of the time.
I just started treatment this summer. I hope that I will continue to work, as usual, in years to come.
Posts: 83 | From Minnesota | Registered: Dec 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I started to feel sick going on 13 weeks now. I had a diagnosis in 3 weeks, but I havent been able to work as a vet tech or really do anything. I feel totally disabled at the age of 28. I hope to get better soon.
I see an LLMD for the first time on Monday Whew!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I was able to work until about four years ago, although I've been sick for over 20 years. Once my cognitive skills left me, that ended my working days. Increasing pain and fatigue didn't help, either.
I was "lucky" enough to have private disablility, and got SSDI approved right away (because I was denied private disability and hired a lawyer to help with that appeal - the BEST thing I ever did. I just used all my appeal stuff for SSDI. BTW - the lawer is in MPLS, let me kn ow if you you want her name - I wish I had talked to her long before I considered applying for disability).
But disibility insurance and SSDI are not enough to cover much. It's awful not to work, but when if you can't, you can't.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Only a small % of our local support group works!!!
I was a stay-at-home Mom when I first got Lymed and then I was deathly ill and would have been unable to work- and even getitng better I was so physically weak it took a year to just gain strength again-
BUT THEN I went back to work full time- I was scared- so scared- I would get bad again- but I had a daughetr with cardiac Lyme and no insurance because my ex had suddenly dropped his (thank you*)! SO I had to go back- and it was GREAT as far as stamina- etc- I was a workhorse- I was great- (I am a perfectionist when I work and people can depend on me, I am the "rock" as my ex-boss put it)(not the crack kind of rock the Prudential kind of rock*)!
ANYWAY work was surprisingly easy and I did NOT GET WORSE. I was fine!!!
Then I had another baby and am home again and because of my husbands health I am probably going to be our sole provider pretty soon in the years to come (he is bad diabetic, dialysis soon they keep saying but not yet)
Anyway- I get scared of the pressure because I have been so sick-
but one does what one has to do-!!
Some people can work just fine with Lyme in my experince- MOST can't!!! But some have to- and make do- and can-
It is hard- though- Tale care-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I got sick almost 8 months ago, and was just starting a new job when it all started too!
I could only work at my new job for a few weeks before I got too sick and had to continue calling off day after day. I felt so helpless and, in a way, kind of embarrassed that I was so ill that I couldn't even make it to work and that I had to keep calling in every morning.
I'm such a hard worker that I felt so wrong having to continue calling off. It eventually got the point where I had to call in and have a big talk with my employers about how sick I've been, etc., and at the time I still didn't know what it was and it felt weird to tell them I was sick with something and no doctor I'd been to could diagnose me with anything.
I have been extremely blessed to have found this job as they were very understanding. After a few months of calling off and not being able to come in or coming in very sparsley, I called them and asked them if it woudl be at all possible if I worked at home for them. They agreed to it.
This is why I'm extremely blessed. It's been so much easier for me to work at home.
Sometimes even at home it's hard to work, but when I have the good times during the day, I do the work then and get as much work done as possible before I may feel bad again. And then if that happens, I take it easy.
I'm only 23, so it's been hard for me at such a young age to feel so extremely ill. I sometimes feel like I'm 100 years old, what with the joint stiffness in my knees which has been as bad as to lock my legs up totally and make it hard to walk at all (which I actually haven't had since being on medicine for a while) and just being lightheaded and dizzy and just constantly woozy.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I taught school for many, many years while being ill off and on ... constantly, back and forth. Finally my body gave out and I was forced to retire.
Six years later I was finally dxd with Lyme disease, which had been the problem for most of my life. That was 7 yrs ago.
I'm now doing great, but am glad I wasn't working when I began treatment for Lyme! Rough stuff!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
I worked up until August of 2000, though I was chronically ill way before that. I honestly should have gone out on disability much sooner, but I would often push myself.
When symptoms became SO extreme that I could no longer even push myself, that's when I bailed on my job.
I was lucky. I had a trail of records from here to Montana documenting my depression, anxiety, and OCD, because without an official diagnosis (joint pain didn't quite cut it), you can't even apply for disability.
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bettyg
Unregistered
posted
i worked from being bitten xmas 1969 and NOT KNOWING IT NOR A BULLS-EYE until DEC. 1998 when i life/quit work after working fulltime 30 yrs. 7 months and getting NO RETIREMENT BENEFITS since i was just 49 and you had to be 55 to receive benefits!
in lyme treatment for 3 yrs.; no way could i have worked; too much fatigue, no energy; mind on vacation! they would not have put up with any more sick leave being used!
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Initially I had to quit work and became housebound. Then I learned about diet connection, leaky gut, heavy metal toxicity.
I changed my diet and sought a physician trained in nutrition and metals. He began to detox me with glutathione injections and we identified food allergies.
Within 2 months I was able to join my husband in starting a new business and 16 mths later, I am working better than ever.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I guess that I'm a rarity so far. (Mind you, I have not had a positive lyme test, only clinically diagnosed) but I've been able to work straight through. I've also had enough energy to ride and race my bicycle a bit. Only a bit, though.
Hopefully you'll stay able to work.
This bug sucks!
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
I am in the same boat as "Disturbedme". I had just started a new job last summer and I was still on my probabtion period when my brain started to fail me and my symptoms got bad. I work in finance and I went from perfect employee to a total mess. Kept making mistakes on simple things. I couldnt keep up with what was happening. It was so scary. I was nearly fired until my bloodwork came back positive for lyme and Bart. They have given me the next few months of and have been very good. I get a small about of illness benefit from the government every week and I spend it all on supplements and fruit and veg. I am back living with my mother and trying to get my head back together. I seems to be much worse on treatment. I had symptoms for 2 years rpior to this. I had spent 2 years travelling arounf the world and having the time of my life...all the freedom you could ever want. Its really hard going from that to not wanting to leave the house. Its too bright outside.... heads too foggy....dont want to see anyone. I really want to get back to work. My eyes are really bad though I may not be able to work with computers. I just want my brain back so I can work again. I'm 27 ....cant retire just yet. Wish I could...I feel like a pensioner!!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I became sick with lyme in 04 and worked until 06 for a company plus ran my construction business part time until 06. I lost my full time job and ran the business full time. My health has now caused me to shut down the business last week. I need to find another job with flexibility, but enough pay to support my family.
We are all in quite a position and all I can do is count on the Lord to provide..........Rich
Posts: 413 | From nj | Registered: Nov 2005
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posted
I was a student and working part-time when I became ill. I managed to complete one semester, and then I just couldn't do anymore. But I hated the thought of not doing anything, so I managed to continue working.
I have been working part-time (about 20%)as a librarian - which has been an easy job. It has been very rough going through treatment at the same time. But in a sense I feel that it has helped me not to give up and keep going with treatment AND a sort of life.
Never thought I would ever experience anything like this. I just have to trust God to pull me through (and some abx as well )
sig
Posts: 155 | From Norway | Registered: Jan 2006
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posted
I've been down to part-time (30 hours which is almost full time anyway though I was working the standard 40 before that) for almost a year... for the year before that, I was taking time off left and right and working under 40 hours most weeks anyway...
had FMLA at one point for headaches well before I got diagnosed with lyme... my job's been pretty flexible with my schedule and whatnot so that has helped me continue working at least at the 30 hrs per week..
I was closer on the physical front than the cognitive front to going back to work full-time before starting ABX 2 months ago... ABX treatment has been rough for me so far but I've managed to work the same hours as usual... just have to get done as much as I can when my mind's working decent...
I'm also in my mid-twenties and trying to deal with all the neurological symptoms... still have some physical symptoms but I managed to see respectable improvement on most of them mostly through diet and supplements as well as some exercise/lifting over the past year and a half..
[ 24. July 2007, 11:53 AM: Message edited by: Charlienj ]
Posts: 43 | From NJ | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Undiagnosed for 17 years. Been in treatment, on and off, for 3 years. I've been working or in grad school for 7 years.
I not only work full time, I also go to law school. I started 4 months after starting Lyme treatment.
We all have been hit differently by this disease. I've had it since I was 12, and I've always been an overachiever. So I've just kept on pushing.
I also took some rests when I needed it. Last summer I worked 3 day weeks, and took a fluff course. I'm seriously considering taking 2 months unpaid leave next year to study for the bar.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I was a stay at home mom for the past 15 years. I had been homeschooling for 3 yrs when things got really bad. I kept falling asleep while giving spelling tests, forgot names of everyday objects and people I know...short term memory was gone. My ability to think logically/critically was severely impaired.
Still not sure about a lot of things. I work less than a block from our home for about 3-6 hrs per week (antique shop). Some times I can't even do that! I'm being treated for Babs right now, LLMD says we'll deal further with the Lyme after that.
I had wanted to work part-time as a sub.teacher in the fall, but I don't think that is going to happen yet. Some days I'm too tired to do laundry, climb stairs, vacuum...you know the drill. Other days I feel okay.
When I think about going back to work I get really stressed out...I don't want to take on a responsibility that I may not be able to fullfil, and getting fired would stink too.
Hopefully, I'll go into remission within the next year. I've probably had this for at least 8yrs as I look back at all the weird, and I thought, seemingly unconnected symptoms and illnesses.
Fortunately, we can still eat and have a roof over our heads without me working.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
I'm another one of the lucky ones. I have had Lyme since last fall, diagnosed in June, and working the whole time. For about a month I didn't function well, but I was able to disguise it pretty well (I have an office job where it's mostly management decisions and writing and I could still write well).
I feel lucky that I caught this relatively early.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I am still working. Lyme misdiagnosed for 15 years. It's not my choice. I shouldnt be working but I have NO choice. I cant take off work to apply for months or years for disability. aNd I have to pay bills so I keep working. Some days I feel like Im not going to make it.
posted
so many touching stories above; those who still can do; HAVE to work; and totally unable to work
my heart goes out to you all! i'm glad we were able to put my total salary into investments, savings, CDs, etc. when we paid off our modest house in 11 years after buying it ... saved us a bundle!
happy hubby RETIRED W/BENEFITS so i was covered as an employee's spouse on health insurance!
worked 30 yrs. 7 months, and NO benefits since i was only 49 then .... 9 yrs. this dec!
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posted
Had my tick bite and rash 11 years ago, been in lyme treatment 2 1/2 years now, and have always worked full time. It's very very hard, sometimes having to go to work a 12 hour day after not sleeping a single minute for 3 days straight because of lyme insomnia. I have had to make excuses why I can't attend meetings because my muscle jerking and twitching has been so bad and clearly apparent. And I don't know how many times I have used the "just have low blood sugar" excuse for dizziness, stumbling, etc etc. Sometimes you just have to do the best you can do. Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I am surprised by how many are not able to work, it seems a lot of you are women. Is there any connection between severity of symptoms and sex?
I have joined the work force 2.5 years ago and my neuro stuff(burning legs, eye pains, headaches, twithing etc.) started 4 months ago. it was really tough 3 months ago due to the neuro pain and not knowing what is wrong with me. I just kept browsing the web at work for answers, since my neurologist couldn't give me any. Things are much better now that I have a lyme dx(even though sometimes I still doubt it) and taking antibiotics/herbs. The pain is much less and I am able to concentrate better.
Fatigue wise I feel better than in many years now that I am taking medicines, this tells me that I have had this beast for a long time.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I was bitten 11 years ago but stayed undx for the first 9 years.
My health deteriorated rapidly, and I struggled to keep going with freelance writing/coaching work. Although I never completely stopped working (even at my sickest), there were weeks I definitely struggled. After starting abx, things seemed to get worse, and I never imagined I'd be able to return to full time employment.
But 1.5 years into treatment, I was offered a corporate position and, after talking it over with corporate veeps, decided to accept.
That was 7 months ago. In that time, I've only taken 2 sick days (today's one of them). There are definitely times, though, when I struggle to keep up mentally. I have made choices to keep my stress minimal and find that just having the responsibility of being someplace has been really helpful for me.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Itsy_bitsyone
Unregistered
posted
Even though I was infected, I never had problems working when I was younger, before I had my child.
Its been up and down over the last few years. About 5 years ago I did lose a job due to this. At one point, I spent a few years unemployed, lost my home, almost lost my kid...
However, the last two years (until the last few months) I have been blessed with the ability to get up and go to work. My job right now is very willing to work with me through my treatment and know I will be out more than normal.
I have a sit on my butt geek job. Not everyone can do that. I was a child photographer before I had my daughter. I could "NOT" do that now. The last two years (till this flare two months ago) while I have had the usual pain, fatigue, crushing headaches, etc etc...my chiro has keep me mobile and I have been able to get here most days.
I am lucky to have this job, where they care and are flexible. The one I lost was NOT like this.
However, if I wasn't such a geek and didn't have a software company job...I doubt I would be working.
posted
I was bitten 10 years ago and went mis-diagnosed for 8 years. I'm on my second round of treatment (IV rocephin, zith, flagyl) after relapsing in January or so (off ABX only 4 months).
I have been working full time this whole time, but have been blessed with a very understanding boss and team mates. I am permitted 1 day per week to work from home (I use Wednesday which breaks up my week). I also have flex time and a good leave accumulation rate.
In 2001, I took 3 months off under the FMLA. Some was paid vacation, some was not. People donated their leave to me, so I did not have too much unpaid.
I am my only paycheck. Don't qualify for SSDI and my other disability option does not pay alot and I may not even qualify. Have never tried that route.
I push myself and sometimes I think it is to my detriment. I often wonder if there is a correlation between not working and not relapsing. But, Lyme has taught me many things. That I can bend my rigid thinking about a work ethic and still get my job done and still leave my boss and client happy.
The neuro-borreliosis has been really hard to live with in the work environment. Sometimes I could go for weeks without being able to think or concentrate. It would take extreme amounts of energy to get my work done.
I brought my camping mattress to work and it is under my desk. I can lie down if needed. I have a pillow in my car and go take a nap if needed. I use my leave when I can't work, but it gets scary and sometimes I think I will run out of leave again.
I try to take a week off every 3 or 4 months. Invariably, I end up taking other days off inbetween. I don't go away on vacation too much anymore as I end up more tired than when I left.
I'm a very conscientious, hard worker and it has been hard to change my thinking about myself. That I CAN do less and still get my job done. Hard to explain here, but changing my thinking about myself has been a big part of me being able to continue working.
Thanks for listening.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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