posted
im wondering if there are people who are in treatment who work full time....do you think that working full time is impossible with lyme? do you think it will impede the recovery process?
Posts: 47 | From new york | Registered: Jul 2013
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TF
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Member # 14183
posted
Yes, there are lyme patients who work full-time. I am one who did and I know many others.
It does not impede the recovery process.
Posts: 9931 | From Maryland | Registered: Dec 2007
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GretaM
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posted
I do. And it's very difficult. As soon as I get home from work I go to bed.
I ask myself that question every day.
Is working impeding my recovery/remission?
But I don't have a choice. I am alone and need to work full time to afford treatment.
It's a double edged sword.
Do you work full time? Is it impeding your recovery?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I still work full time as well. It did not impede my recovery either. BUT, I wonder if I had to do IV abx and work full time, I'm not sure I could manage both.
Posts: 80 | From New England | Registered: Jun 2012
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posted
I tried to go back to work twice, and it definitely impeded my recovery process.
I wasn't resting enough. I was stressed. And I wasn't exercising.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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lymeboy
Unregistered
posted
I do, and I have a teenage daughter. I hate getting out of bed. It is difficult. I was out of work for about 6 months. But I've been working for 3 years straight, full time for about a year.
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gmb
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posted
When I first started treatment in March 2010,my employed asked what they could do to help, I went on a 4 day work week.
The 3 day weekend gave me more time to rest through some of the early herx years, and I could spreading yard work over 3 days helped. I also made all of my Dr appointments on the day off.
A 20% pay cut hurt, but I think the extra day off helped a lot. I went back to work 5 days/week in Sept 2012. There were numerous time when my IV nurse had to changed my dressing in my office lol... that was a site for my co-workers.
posted
I did for about 2 years and then came to the hard realization that if I were ever going to get better I would have to leave my job. The other driving factor to leave was that I felt my performance had diminished and I had too much pride to continue to produce inferior work.
I was fortunate to have short and long term disability policies to make my decision a little easier though. It was still a hard decision because it will be difficult if not impossible to re-enter the workplace because of my age and my profession.
After I stopped I could not believe how much my fatigue improved.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
As a single mother with one income, I have no choice... whether it will impede my recovery, I don't know (because I'm just starting off).
BUT - I am fortunate to work in an environment that is forgiving and flexable... so I don't think it will hurt my recovery. Now whether my recovery hurts my job performance is another question! But I hope not because the folks here are good to me and I hope to be able to continue to offer the same! :-)
Posts: 173 | From Washington, DC | Registered: Oct 2013
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quote:The other driving factor to leave was that I felt my performance had diminished and I had too much pride to continue to produce inferior work.
that my work environment had changed tremendously. There was no tolerance for anything but the "best". I have no doubt I would have received a less than stellar review which would have been my first one in my 25 year career. Mentally I couldn't have handled that.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
I am finding it difficult to maintain my focus at work. I work full time, have yet to find an LLMD for treatment so each day is a major struggle to get out of bed and get ready for work. Once I am in my office and sitting down, the pains kick in and it's all I can do to pack it in and go home to bed again.
I have short term disability so if I end up receiving treatment and have to take a short leave, I will, but in the meantime, I try to just white knuckle it and go to work every day.
Aside from the physical pain and disabilities, this has been a HUGE hit to my mental and intellectual stamina.
-------------------- Tested positive for Lyme/western blot in May 2010...received standard treatment of doxy for 3wks. Whoop dee doo...symptoms came back in full force following tkr in January 2012. Posts: 46 | From Connecticut | Registered: Sep 2013
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GretaM
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posted
Sugarjoe-I agree with you completely on white-knuckling it, and it being a big hit on mental and physical stamina.
I feel like I'm going in circles.
Terv-I agree with you on job performance also. My job performance sucks and the emotional blow from that causes me to be depressed.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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posted
I also feel the need to add that now I am going on IV I will be missing 2 days per week.
Instead of praising me for continuing to come to work 3 days per week even though I'm ill-my boss is resentful I will be missing two days per week.
It makes me wonder why I'm doing it.
The added guilt directed towards me while I'm trying to heal isn't helping either.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I had to stop working for 6 months. My LLMD said I was exremely sick. My CD 57 was 16. In fact he said he didn't know if he could help and is a top notch LLMD. I went back to work after 6 months for 30 hours a week. I know my performance is below pre-Lyme. I try to double check my work or will ask co-workers to do so. I am hoping my review won't be so bad as I've been steadily improving on Lyme treatment my work performance goes up. Good luck,
Posts: 697 | From CA | Registered: Dec 2011
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posted
Greta, that's awful. I have to say that I am feeling a bit of resentment from my boss of 20 years (also a family member)...as if I'm lying and using this as an excuse to get out of work. I ALWAYS come in, no matter what. I was taking abbreviated days here and there all summer as the heat was KILLING me and I was exhausted and strung out.
I explained to boss in very great detail what was going on, how I didn't have an official dx, I was seeking help, going for MRI's, NC tests, EMG's, blood panels after blood panels...it was exhausting just trying to figure it out.
For a couple of months, he was okay and I was keeping up with my work. I would even sometimes come in on a weekend to avoid interruptions during the normal work day. But then suddenly he began getting nudgy and docking me for two hours here and there. I'm a salaried employee. I notice he doesn't mind when I stay late or work through lunch (usually because I cannot move or am too tired to get up and leave).
Grrrr. So on top of the completely inadequate attention and treatment for ticborne illnesses, there remains inadequate attention and consideration for illnesses in the workplace.
I shudder to think about those suffering who work hourly jobs for crappy companies. I would be unemployed by now.
-------------------- Tested positive for Lyme/western blot in May 2010...received standard treatment of doxy for 3wks. Whoop dee doo...symptoms came back in full force following tkr in January 2012. Posts: 46 | From Connecticut | Registered: Sep 2013
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posted
I work full time too. I have good days where I feel fine and I have bad days, mostly when I herx and barely make it trough the day.
I ALWAYS feel better on vacations and in the beginning of the week after I rest on the WE, so I think if I would be able to stay home it could be beneficial.
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
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BoxerMom
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posted
My LLND told me not to work, but that was not an option. I cut back from 5 days to 3 days. Huge pay cut, but I was dying at work.
That was 2008. I tried to go back to 5 days at the end of 2011. I lasted a year, but it was a huge hit to my health. I left at the end of 2012 and ended up taking a 9 month leave of absence.
Now I'm back, at 2 days per week.
I would work more if I was able, for the income and distraction. I feel guilty for not being able to get a career going, and I'm bored out of my skull.
I'm making interest-only student loan payments, so I have a huge principle balance to face up to eventually.
Gaaaaaahhhh. Career, money and Lyme do not mix well.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I worked 3 yrs in the beginning in very high stress demanding corp America. One day upon awakening, I could go no more.
I finally realized my health came before my career. By that time I had done some serious damage to myself.
That's just my story. Everyone has different limits.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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BoxerMom
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posted
I'm with Pam, only I had just graduated college when I got sick, so I was still working low wage, no benefits type jobs.
I showed up every day, unbelievably ill, and worked my butt off. Work ethic, survival, and all that.
I ruined my health. And, thankfully, the mindset that I was "doing the right thing." Showing up, never complaining and hoping for the best was pretty delusional on my part. It benefitted my employers while slowly killing me.
Oh what we learn from our culture!
Now my health comes first.
I am fortunate that my husband works full time. I'd be on disability or living with my mom if that wasn't the case.
My husband does want me to apply for disability, and I am considering it.
posted
That's interesting, I actually benefit from working. It keeps me from dwelling on how sick I am. I always feel worse when I stay at home, especially if I am doing nothing.
I think if you are too sick and bed bound that's one thing, but working while you are recovering can really help. I think the structure that work gives you is very important.
Posts: 169 | From The Poconos | Registered: Jun 2011
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MannaMe
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posted
My husband worked until he couldn't go anymore. He was only diagnosed after he quit working. He was only working part days, part of the week by that point.
He hasn't been able to go back to work since. He did start a home based business that he can work when he's able to and rest when he needs to. So far its working out okay for him - health wise.
Posts: 2249 | From USA | Registered: Aug 2011
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CherylSue
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posted
At my worst when I was bedridden, I couldn't work, and went on disability for two years. Ater I was on abx for awhile, I got to the point where I could work fulltime with naps in my car at lunch and sleeping when I got home.
It was hard, and I did it. Whether it impeded my recovery, it is hard to say, but it sure was good for me emotionally and mentally, because I loved my job.
It was really easier to go to work to get my mind from thinking how sick I was feeling. If I stayed home I was more prone to crying. Working kept me going, giving me a semblance of a normal life, and motivating me to get up each day and do my best.
I was able to retire eventually with benefits. My health has improved, although I am not 100%. I occasionally work part time when needed. I love doing this.
However, there is always the fear that I may relapse which I've done many times. I just hope I can get stronger and beat this trend.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Ellen101
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posted
quote:Originally posted by Pony: That's interesting, I actually benefit from working. It keeps me from dwelling on how sick I am. I always feel worse when I stay at home, especially if I am doing nothing.
I think if you are too sick and bed bound that's one thing, but working while you are recovering can really help. I think the structure that work gives you is very important.
I feel the same way. I need to be out working otherwise I would lay in bed thinking about my pain. Sure, some days its tough, and on those days I slap on my pain patches, up my supplements and antiinflammatories and hope for the best.
It's so important to have other things beside this disease to focus on. Of course having 3 kids keeps me busy. Many times I was driving with ice packs around my hips to get them where they needed to be.
Posts: 1748 | From United States | Registered: Dec 2011
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Ellen101
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posted
quote:Originally posted by mlg: I had to stop working for 6 months. My LLMD said I was exremely sick. My CD 57 was 16. In fact he said he didn't know if he could help and is a top notch LLMD. I went back to work after 6 months for 30 hours a week. I know my performance is below pre-Lyme. I try to double check my work or will ask co-workers to do so. I am hoping my review won't be so bad as I've been steadily improving on Lyme treatment my work performance goes up. Good luck,
The cd57 is not really a good indicator of how sick someone is or is not. Mine is still coming back below 20.
Posts: 1748 | From United States | Registered: Dec 2011
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quote:Originally posted by Pony: That's interesting, I actually benefit from working. It keeps me from dwelling on how sick I am. I always feel worse when I stay at home, especially if I am doing nothing.
I think if you are too sick and bed bound that's one thing, but working while you are recovering can really help. I think the structure that work gives you is very important.
Thank you for this post! I think (or at least am hoping) that this will be the case for me as well. When I have too much quiet time, I start to over think and dwell.
Plus, the folks at work have been so supportive of my health care issues over the last few years, so it is a little bit of a social outlet too. :-)
Posts: 173 | From Washington, DC | Registered: Oct 2013
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gigimac
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posted
I am glad there are people who are able to work with lyme. There is no way I could now. One trip to the grocery store and I get light headed and out of it and my brain is reeling.
If I tried to work it would knock me on my butt.
I spent one day of hardcore house cleaning recently and got a swollen face and a huge fever blister and exhaustion for my efforts. Like my immune system smacked me down.
I would love to work again, I hate being at home soo much and I terribly miss being around people.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
I work at a demanding corp job with travel. I initially took a 3 month leave of absence when I had my picc. I did 30 hrs/week for 3 months after that.
Then I went back full time because corp americas patience was running thin and I figured I would get better. Basically I work everyday in pain and I am not sure how much longer I can do this.
I would love to work part-time. I love my job. I am in a very cool role that only a handful of poeple can do. It does help distract and give me something to do besides obsess about lyme.
I think it has impeded my progress due to stress and travel, but helped because my income has helped to afford treatment. Not sure what I will do going forward.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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posted
I work full time in a very stressful job. I too had to travel, but so far have be released from travel as my employer understands the issues I'm having.
There are a few days when I just can't get up, I call in and tell them I'll be there when I can - usually 1-2 late, then I make up the time during the week. If I have to leave in the afternoon, usually 1-2 hours because I'm too sick, I also make up that time during the rest of the week. I do not have sick pay where I work.
I am off every other Friday and do my best to schedule all my drs appts for those days.
I am on meds - I do herx - all my close co-workers know about me having lyme and know when I walk in the office if I'm not having a good day. They have learned to tell by looking at me when I don't feel good - they tend to stay away from at those time.
I have had lyme, we think, for about 40 yrs, although misdiagnosed with FMS for about 20 yrs.
It's tough, I love my job and I think my job actually keeps me going on the right path. As others have stated above this post, working helps keep my mind off of being sick!
Good luck!
Posts: 250 | From East Coast | Registered: Jan 2013
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ukcarry
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posted
Whether or not people can stay working with lyme depends on the complexity and stage of the infection, your own body and lifestyle, how long you have had it (especially if left undiagnosed and untreated), what your symptoms are, what your work is,and so on.
Not everyone with lyme has intense fatigue and malaise, but if you do have it, holding down a job may be impossible unless you work part-time at home.
I became ill in the 1970s and managed to work until the mid to late eighties because I had periods when i was less affected....though still had to have quite a bit of time off sick. Since then work has been impossible, especially as the symptom patterrn is so unpredictable. With my few social engagements, I am forever having to cancel, so .......not to mention brain fog and problems with concentration : i am sure most employers don't want that.
The stress of work may also affect people with lyme badly, even if you are someone who is more mildly affected.
It is very cruel, as the illness costs a lot of cash one way or another, so obviously, many people try to continue beyond what they can cope with. I have been lucky in that my husband has earned enough for us to live reasonably and bring up a child, but it is hard not to think occasionally of the money lost because of being unable to work, the enormous amounts we have forked out over the years and i am still no better.
If you are newly ill, try not to push on to the detriment of your potential recovery if you can possibly avoid it. Being able to rest will help you to manage treatment, keep up your immune system and hopefully, recover.
[ 10-13-2013, 04:03 PM: Message edited by: ukcarry ]
Posts: 1647 | From UK | Registered: Nov 2008
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posted
Wow. Can't believe how many of you can work. I can barely get out of bed. I'm lucky if I can sit up straight or heat up my own lunch.
I wish it would let up. Lying around and panicking while doing nothing is getting to be old hat.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Kudzuslipper
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posted
When I first started treating I used a lot of sick time. And I worked from home a lot. I know I am lucky that I can do that. But a I totally get that a work place has to work. I am very self conscious and probably end up working more to secure my flexibility. But I know I am at the mercy of my coworkers. Cause the minute it's no longer working is when I would have to go on disability.
If you can work 4 days a week it's great. If you take Wednesday and the weekend off it really helps.
Posts: 1728 | From USA | Registered: May 2011
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posted
I've always worked, although I've had to make some adjustments to do so, and I've had to quit jobs that weren't able to work around them.
For me, it's been doing a four-day work week. Also at this point, I have a boss that understands that my symptoms are unpredictable (another girl here has a very serious case of Crohn's, and is sort of in the same boat). I can get through two days, catch up on some rest on Wednesday, two more days, and then weekend. Having a day in the middle is a life saver for me.
Aside from being able to rest, though, I had to account for the fact that my lyme doc is a 5 hour drive, round trip, and I see him once a month. When I was on an IV, I had to figure out when I could have the nurse come to change the dressing (which is a weird conversation for them, most seem used to working with people that don't have to schedule around work). I actually went to work the day after I got my PICC placed, 3 out of the 5 lines I've had to get put in.
I think it's a very personal decision, and you have to be pretty honest with yourself about what you can handle. I don't think that it's impeded my recovery, but I do think it's harder. I really have to focus on taking care of myself, and keeping an eye on my energy levels.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Kudzuslipper
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posted
If I had a choice I wouldn't have worked. It's hard to give up a good job, and it's hard to figure if you can keep it up. You go along fine... And then your sick and then your ok and then you feel like you're gonna die and then you have a good day... So it's hard to predict how long your gonna be out, how long your gonna muddle through. I basically muddled through for two years. I was real honest with everyone else in my life... I really did little else than work and did only the absolutely nessesary things to care for the house, our dogs. My husband picked up a lot and gave up some fun. But we got through. About a year ago I started to have more energy to go to work and also have a life. It does get better.
Posts: 1728 | From USA | Registered: May 2011
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map1131
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posted
I became lost in my own cubicle. Literally! I couldn't remember how to do so many tasks. I was pulling out the 'how to" book so many times during the day. My job was to multi-task specific duties and juggle hundreds of other people's problems.
I made so many mistakes, so I was constantly trying to keep my head above water, 7 days a week. No amount of money was worth what I did to myself.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Andie333
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posted
I've worked full time whenever I could, the entire time I've been sick. There have been times I've struggled with basic tasks that previously had come easily to me.
Still, working took me out of my own head. I had to focus on doing my job, so I wasn't able to think about being sick and feeling yucky.
Plus, it made was a boost to my self-esteem, to be able to contribute something, anything, to the world.
Like others have described, I had times my skills wavered...times I struggled with nausea or pain or dizziness. But I didn't want to stop working, not while I had the chance.
I lost that chance about 14 months ago, when my national company laid off almost 40% of its workforce. I haven't been able to get on my feet professionally since then.
Now, I'm finding what I had long suspected--that not going to work and feeling that purpose creates a stress that only exacerbates my Lyme symptoms.
I'm in the process now of starting my own business from home. As others have said, I think it's important here for you to know yourself and what your needs are. Then decide. If you start working and feel overwhelmed or exhausted, stop. There's always that option.
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