I struggle with this every day, and thought I'd finally post and ask others.
I've kept working through the last six years, including 6 challenging months on rocephin. I have a demanding, though reasonably understanding, full-time job.
As many of you can relate to, working consumes almost all of my energy and 'awake time' so that I have little left for a 'life' (not that I could afford one, anyway!).
The physical aspects of working (commuting, computing, etc.) generally cause me more pain.
I could sell my house and move out of state and live with my parents.
I have enough equity that I could (I think) pay for major medical insurance for a while (I'm paying for almost all my health care expenses out of pocket now anyway as insurance doesn't cover anyone I see).
But, if getting more rest and having less stress didn't work, I'd have given up a LOT.
Did anyone find that getting out of the rat race was the thing that made them better? Or even helped them start getting better?
monkeyshines
Posted by geniveve (Member # 8646) on :
lyme caused me to leave my job of 30 years. it was extremely stressful (boss calling me at home, 11 phone lines, dealing with employee complaints, internal stresses, over 500 active cases every year, and on and on).
i would say yes, it has been a stress reliever has certainly has helped my marriage.
altho i am fortunate to have both our incomes, i miss my friends at work tremendously.
physically i have ups and downs but at least i am not dealing with a very unsymphathetic boss and restricted leave policies.
so overall, it was a godsend for me to retire.
Posted by lymednva (Member # 9098) on :
I really didn't see that I had a choice about continuing to work. My body rebelled and I was almost bedridden before I began receiving treatment.
I am lucky that I had a good STD and LTD policy at work. I also should be getting disability retirement, but the state sees otherwise, even though I am receiving SSDI. Go figure!
I am single, so this was not an easy decision financially, but my body really gave me no other option.
I now have found other ways to supplement my income and hope to be able to work more regularly at my home-based businesses as my health improves.
Posted by JeffM (Member # 8919) on :
Monkey, I was the way you were for a number of years. Working through and around all the symptoms. Collapsing on the weekends and at night.
However, once I got a lyme diagnosis 1.5 years ago my doctor insisted I stop working for at least four months.
He said the body will not get better with stress. In the end, it's the immune system that kills most of these bugs.
After four months I was just as bad. Work had to replace me, I ran a big department, and I needed an early retirement due to disability.
I am glad I did. I really had no choice healthwise. By November the tx started kicking in and I was bedridden and in a wheelchair.
I will never work full time again. I hope to be able to work part time some day soon.
But it does confuse me sometimes when people say they are herxing, suffering etc. but still able to go to work.
I was not able to do that.
You have to take care of yourself with this disease. You and your health have to become the number one priority.
I had a lot of grief leaving my work, and financially it suks big time. But thats what I had to do.
That's my two cents worth.
good luck
Posted by LC (Member # 7070) on :
Hi Monkeyshines-
How about working from home? I never thought my boss would agree to it but I asked about three months ago and he agreed without any argument. It has helped me so much mentally and physically.
And I have the type of job that I have to be available to customers all day long. The IT people built a "tunnel" right to my house. It's as though I am in the office only I am at home!
It's been amazing. It has helped so much. I can sleep in later, don't have to expend energy getting ready or commuting. I even take time almost every day to sneak in a walk, which has done wonders for me. I can lay down for a few minutes in the afternoon if need be. The flexibility has been a god send.
I was where you are at not long ago. I dragged myself to work for so long while in treatment. Many days I didn't know if I could make it through. Often I would have to lay down in may car at lunch. Finally I made the decision that something had to give.
It sounds like you have a solid work ethic and I'm sure your company would rather try to accommodate you than lose you.
If working at home is just not option, perhaps try short term leave? This option may be available to you. I was like you, and didn't want to give it up working. But you may not have to. I would try talking to your boss or HR and see what benefits may be available to you.
Reducing stress and using up less energy during the day will help you to get well. You should go for it! It has helped me tremendously.
LC
Posted by Carol B (Member # 9110) on :
Lyme Disease brought me to my knees literally, before I started treatment. With diagnosis I had some ammo to ask for reasonable accomodations, but my supervisor thought otherwise and I was released on Family Medical Leave- without pay-but my job is secure if I amable to return.
Meanwhile we struggle mightily with finances-have remortgaged-which will tide us over for a bit. I am a teacher and was going to tough it out till the end of this past school year-at first I was saddened and depressed at the thought of not working, but then I felt a tremendous relief.
Now I do volunteer work in the office at my church- at my speed, when I feel up to it. Tomorrow I go in to work on the Church Newsletter for August. I volunteered for our vacation bible school-and barely made it through the week-and that was only half days!
I have just started treatment(four months) and I find my abilities-both physically, emotionally, and mentally are like a real YO YO.
Bottom line(long winded answer, I know)it was getting pretty hard at work-and I think I would have gotten sicker had I tried to stick it out much longer. At least now I get to take naps.
Carol
Posted by kitkat32 (Member # 9682) on :
Hi Monkeyshines,
I struggled with this same issue for several years. I loved my job. It was stressful but very rewarding to me.
I first cut back to 3 days a week which I was handling okay. But, part of my job was to be on call one week a month. I would get calls at midnight...have to go in..come home and get called in again at 3 am..come home..and have to be to work at 8. I tryed explaining to my employer that my body just couldn't handle this anymore but without a dx at the time they didn't really want to listen. I decided I needed to take care of myself.
It has been one year this week actually since I made the decision to leave. I miss my clients and my co workers alot but life is much easier now. I don't have to worry about getting up in the middle of the night or feeling bad when I had to call in sick.
I try to goto bed at the same time and get up at the same time everyday. My insomnia is messing that up a little now. I also try and take a nap in the early afternoon too if my children comply with that.
It has lifted a huge weight off of my shoulders. I feel better physically and mentally.
kit
Posted by groovy2 (Member # 6304) on :
Yep I quite my job 8 months ago-- one of the best things I have done -
I was Very Sick-getting well is a full time job for me You only have one life you can get another job when you get well-Jay--
Posted by Aniek (Member # 5374) on :
I can't quit my job because I would just shrivel. I need to be too busy to have time to think about being sick. But, I cut back on work for a little over a month and it did help.
I realized in May that I was way overstressed and it was taking a toll. I was sick, had moved into an office building under construction making things worse, work stress was building, and I was approaching law school finals. (Yes, I am insane.)
So I decided to work 3 day weeks for a month, to not do any work travel, to say no to assignments and to take a very easy, low stress class this summer.
It really did help. The best thing that came from it is that I now feel totally comfortable saying "no" at work. I've been here 5 years and I'm well respected. People know I've been working through an illness. So they believe me when I say I just can't do it.
I also have no problem taking sick leave, and I got my boss to give me a backup person who knows what I'm doing in case I'm suddenly out for a week or two.
Posted by monkeyshines (Member # 6406) on :
Thank you, you have all given me so much to think about.
I'm so sorry for all of you that have had no choice but to stop working, with all the financial and emotional hardships that entails.
I have no doubt that if I had the money, or even if I weren't on my own, I would stop working today.
While I am somewhat (okay, too much) defined by work, it's getting too hard, and certainly not how I'd choose to live.
I tend to feel like I can't possibly make this big of a change. It actually feels like it would be more stressful to figure out how to stop working than keep on.
I might be reaching the point where I don't have a choice, though. Kitkat, I feel that I may be heading in the same direction as you. I have a great job working with great people, but reality is reality.
LC, those are both good ideas (trying to work from home or going on short-term leave) that I'm just too stubborn, or something, to truly investigate. I bought short-term disability several years ago, but can't bring myself to try to use it!
I have myself convinced that those options wouldn't work (I supervise a number of people and also produce a lot of the work in our dept. myself, so I feel like I either have to stay or leave), but I won't know til I try. I've actually been with my employer for 20 years (!)
Aniek, I did a master's at nite a couple of years ago. I sure couldn't do it now, but I'm glad I stuck with it while I could. Good luck!
monkeyshines
Posted by Aniek (Member # 5374) on :
monkeyshines,
Have you considered cutting back on your hours? Since you have been with your employer so long, they probably want to keep you. What if you could work 4 day weeks? Or if you could work 6 hour days?
It was really nice working 3 day weeks and having those extra days to rest. It is also nice having the flexibility to know I can sleep in and get into work late when I'm not feeling well. My boss has told me that my health is more important than the work, so when I need 2 more hours of sleep I take them.
Posted by liz28 (Member # 4946) on :
My vote is absolutely not.
First of all, there's something wrong if you've been sick for six years with no relief. I've been sick for almost six years, was disabled for over four, and was stuck at home with a fever and had neuro Lyme and did seven challenging months on IV to no avail, couldn't walk more than a few feet, was looking into hospices, blah blah blah.
It turns out I had two COMPLETELY curable co-infections, and one fairly mild case of Lyme that is being 98% controlled by ketek and omnicef until I can afford IV rocephin out of pocket, since there will now be no co-infections to interfere with it.
I would do anything to have had a video camera on the day I asked my ex-doctor for bartonella antibiotics, after almost five years of being disabled. This is someone who was getting about $400 a visit and recommending herbal pellets, and had a waiting room filled with all kinds of Zen paintings and Tibetan sand wheels and little prayers for patience and acceptance. If you could see a replay of the look on his face when he realized the gravy train was leaving the station, you would probably try for a promotion at your job, and then get a second evening job. Never underestimate the power of money, or lack thereof, to define your choices in life.
If you have been working a long time and are not sure what happens to people who are financially dependent and disabled, visit your local free health clinic, homeless shelter, state-run nursing home, or veterans' services center.
Ask yourself how you would feel if you suddenly became one of those people. Could you get your job back again once you left, or a different job with a comparable salary? Could you walk into a bank and look like a good loan candidate? Could you go to an emergency room at a hospital and get the best possible treatment? If you decided you wanted to see another doctor, could you do it? If you heard about an antibiotic that was sold in another country where you didn't know anyone, could you get on a plane, visit a doctor in that country, and try this new drug? If you had to relocate to make better wages, could you do it? If you had another health disaster like a car accident, what would happen to you?
As for depending on your parents, my father recently developed rapid onset Alzheimer's, which led him to break a bone, which led him to gain another fifty pounds and collapse his knee joints and develop severe depression. My mother ground her jawbone down from the stress of taking care of him all the time, and is now having all her teeth reset for God knows how much money. She also has fibromyalgia, and recently fell asleep at the wheel of her car and drove into a field. In the space of six months, their financial, emotional, and intellectual availability went through a dramatic and irreversible shift, and my mother finally called and said look, we just can't help anymore. If I were still disabled and praying biaxin would finally kick in after six years, this would be when I became a homeless person. Never, ever, ever become financially dependent on your family if you can avoid it.
If you have to move, you may wish to consider renting out a room, or renting the whole house and staying in a cheap studio with a trustworthy doorman. But again, take a long, hard look at the antibiotics you are using. And don't be afraid to see another doctor.
And a couple of other hot tips, even though they sound obvious:
Make sure you are on sufficient yeast control, like probiotics, nystatin, or diflucan.
Make sure you are on serious liver support. Liver damage symptoms can be mistaken for Lyme.
Don't laugh too hard at this, but make sure you regularly clean your house with Lysol, or hire a professional cleaning person to come in once a week. Lyme patients are terrible housekeepers, and you might be fighting off a lot more bugs than you think.
Posted by cordor (Member # 9449) on :
I had a wonderful job for 13 years. Close to my home, wonderful co-workers and excellent medical insurance (government job believe it or not) I have been undergoing treatments for Lyme for 2 1/2 years. I was going into work even with the pic line in back in the beginning. Then last September I started to go downhill. (I have had lyme undiagnosed - for over 15+ years and neuro lyme) So I went out on sick leave ( I had over 3 months of sick time accumulated)after that I used the family medical leave act and when that was up, they told me I "no longer had any status". Nice way of saying you are fired. They literally forced me to resign. It has been a little over 3 months now that I have been not working. Has not made much difference in my health...in fact I have progreesively gotten much worse. .but I think that this is the path the lyme was going to take regardless of working or not. It certainly is not easy to feel "dependent" on someone. (my husband, in my case) I was making a good salary and now it is all on him. That part is not easy to face. But this is what love is all about. This is what family is all about. These are the things that truly matter. Yes, I miss my job, but I would do anything at this point to regain at least a small portion of health right now. And I thank the Lord there are people standing right beside me....helping me try. It is a hard decision about leaving a job. VERY HARD. There are alot of consequences. Alot of worries, but there is also a realization that sets in that what good is the money, what good is the security if we are not well enough in the long run to even enjoy it? Hope this helps at least a tiny little bit.
Posted by minoucat (Member # 5175) on :
I was able to quit work without becoming financially destitute, so I did (I also quit before I got fired for excessive brainfarts, which were becoming more frequent, more serious, and more obvious to others. I did not have the option of cutting back my hours). At the time I quit, I had worked, with LD, for 17 years in pretty demanding jobs and in ever-changing stages of health and cognitive function.
I will say this for my quitting -- it saved my husband's life, I think. I was so focussed on getting through my work day that I had no idea how badly he was doing. It took me 2 months at home to be functional enough to notice how seriously his health had deteriorated, and to do something about it. And about my own condition. It wasn't until I quit that I was able to thoroughly research coinfections and appropriate treatments, which led me to my new doctor, which turned things around for us. Liz is totally on the mark about this.
Quitting work is a difficult decision, fraught with guilt and issues about money, health insurance, and future employment opportunities. When you're brainfried with LD/Co and emotionally as stable as a frisbee in a hurricane, it's doubly hard. One thing I will say -- don't guilt yourself into staying or leaving or whatevering based on what other people can or cannot do. Staying, quitting, and working part time are all options that have worked well (and badly) for all of us, in different circumstances.
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