posted
I have recently been diagnosed by LLMD with lyme and Babesio - positive Ignx tests. I have off for two months on sick leave and not sure due to symptoms how soon I will be able to reutrn to work. How do people with lyme symptoms WORK - especially if their work requires them to perform demanding physical activity or in my case (having serious cognitive problems) and my employment requires me to review documents and draft comprehensive reports. I got to the point that I could no longer perform my job duties in a manner that I was accustomed to and realize that if I had continued that I would be jeopardizing the integrity of my work.
Posts: 11 | From Cumberland, Maryland | Registered: Apr 2010
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posted
I'm sorry this may not be the answer you want or are looking for but it's the best I can give... You just do it.
It took me 7 months of non treatment to finally drag myself back to work but I just had to do it. There are times when I feel like I can't go on but I just sit down relax take a breath and then go do my job.
I work outside the heat has been miserable but I'm still going and actually getting out helped with a lot of my symptoms.
I guess the thing that really got me motivated was my dad basically telling me he believes something is up with me but no one is going to live your life for you and I was ready to have my life back.
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
I have a sedentary indoor job, but it requires a lot of concentration and memory for details.
Luckily I have not had cognitive issues so far. I sit at a computer all day. I have had a lot of pain, stiffness after sitting at my desk for an hour, fatigue that makes me desperately want to lie down and my fingers even feel too heavy to lift up to type, and occasional emotional symptoms that just make me want to chuck it all.
I have told one coworker but have not told my boss or my employees. I get sick of pretending nothing's wrong.
However, people are astonishingly unobservant, and they already considered me eccentric, so they don't notice all the ways Lyme impacts me at work.
One thing I do is go in with a smile on my face and greet everybody cheerfully in the morning. If they ask how I am, I say, "Fine," as if I meant it. No point in spreading gloom and doom or complaining about what can't be changed.
I also take micro naps in the restroom and sometimes lunch hour naps in my car. I bring all my own food; we have a fridge, a sink and a microwave, and I keep some dishes in my locker, so I can eat my healthy food.
If people at your workplace go out to lunch together a lot (mine don't, but they have in other jobs), and you can't eat the food at the restaurant or are so fatigued you can't go with them, or broke from paying for Lyme treatment, then let them think you prefer eating alone and reading a book or something. Then they won't keep harping at you that you should go out with them.
Crucial is accepting a) you are sick and will continue to be for some time; b) that is NOT your fault, and you are doing the best you can to get well; c) you have no other option but to keep on working, so you just have to do it; d) you WILL get well in the end, so this will not be the permanent state of things.
If you do have an option to go part time or take time off, do it. I would love to have that choice.
It also may be that you simply cannot work. In that case, remember that many things are beyond our control, and that all the willpower in the world cannot overcome some limitations. You might have to take time off whether you want to or not. Then you will have to decide who you can ask for help.
If your job is too physically demanding or your schedule is too difficult, look for another job that is less taxing. The effort of job searching and learning a new job might be less than the continuing effort to keep a job that is doing you in.
You can also ask for part time FMLA leave. You don't get paid unless you have vacation time to use, but you could use that time to work part time for a while instead of being off all the time for just a couple months.
I have also reasoned that although being off work until I am better would allow me to get more sleep, feel less awful, have a little energy for occasional fun, do a better job with my diet, etc., it would also depress me greatly to be without some social interaction with colleagues and without the means of supporting myself.
If I get very depressed, I will stop taking care of myself and I will get worse.
If I lose my income and my health insurance, I will not be able to afford any of my treatment nor a good diet, and will get MUCH worse.
So my very best option for getting well is to keep dragging myself out of bed and going to work as long as it's possibly in my control to do so. If you know it's what you have to do in order to get well, it makes it a little easier to keep doing it even when it's hard.
But if I get cognitive symptoms, I won't be able to fake it any more. I already feel guilty about my lack of productivity on the days when I feel bad. Being incapable of doing my job would make me feel terrible. But we MUST remember it is not our fault that we are sick. It's no different than if you couldn't do your job because you broke a leg or arm.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
I can do it because fatigue is not one of my symptoms.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I could not work. I *didn't* work anyway because I stayed at home and took care of my kids, but I couldn't even do that. I was bedridden by the time I was diagnosed then got worse at the beginning of treatment.
I had severe cognitive symptoms as well at physical, so even a desk job where I had to use my head would have been impossible (I couldn't sit up anyway).
The good news is, I did get better and now I teach pilates part-time. It's a physically demanding job and I'm holding up to it quite well.
I think a lot has to do with how sick you were when you finally got diagnosed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for all your input. I have been off just over a month and have about 2 and 1/2 months of leave remaining. My fatigue has improved significantly but my cognitive problems have not subsided one bit and I am afraid that perhaps they may never resolve. I can deal with the aches, pains, etc. but not being able to think or respond clearly is ver disturbing. Expecially since I have a job that requires me to review and draft comprehensive reports. I was able to get by for a while but it all caught up with me and I had to take off work. I just wanted to know how long it takes for someone's cognitive abilities to return to somewhat normalicy.
Posts: 11 | From Cumberland, Maryland | Registered: Apr 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I had severe cognitive problems. I could not at time get the thoughts that were in my head to be verbally expressed.
I had no short term memory. I could not remember simple things .... for example, my kids would call to be picked up, I'd hang up the phone and forget to go pick them up.
It ended up that if I was physically able to leave the house, I could not leave the house alone in case my mind decided to be MIA.
Once I got on a med that worked on my cognitive symptoms my head cleared within 4-6 weeks. The trouble was, we didn't know what that med was. For me it was bartonella and/or parasites. I treated both together and that was when I got my head back.
I have no remaining Lyme symptoms. I have worked hard on detoxification, exercise, nutrition, and parasites in addition to Lyme and coinfection treatment. Also, heavy metals.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I was a teacher and became almost bedridden before I stopped working. I loved my job, but could no longer keep up with the physical or mental demands. (Try staying a step ahead of 11 and 12 year olds!)
I was one of the "lucky" ones. I had short and long term disability coverage through my job. I've been on it for almost 9 years now. I had to retire and get small pensions. I also am on SSDI. It's not a huge amount, but together it gets me by.
As a single person I am the sole support of myself and am doing everything I can not to become a burden to my adult children in my older years, which seem to be approaching all too fast.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I do not smoke but I did bring nicotine gum to work and a quick 1-2 minute chew would get my neurons working for 1-2 hours at a time. I tried chewing B vitamins, eleuthero etc but for me nicotine did the trick. I rarely use it now as even my worst day now is better than my normal days back a year ago when I started treatment. Anyway I am not suggesting at all that anyone else try what I did but for me it gave me control of my cognitive abilities and allowed me to stay in my highly analytical, realtime job for this whole time.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
I do find that using smokeless tobacco helps me concentrate when working but it got to point where that was not helping. I have been on Ceftin for about 6 weeks and just started taking Mepron and Zirthomax for Babesios (?) co-infections which showed positive on Ignx test.
Just hope that the cognitive problems resolve so I can go back to work.
Posts: 11 | From Cumberland, Maryland | Registered: Apr 2010
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posted
Ceftin hits free roaming spirochetes but you need flagyl to get cystic forms, many here have noted significant cognitive improvement with that med. You mention Lyme/Bb and Babesia, what about Bartonella, note that Dr B's treatment guide says that neurosymptoms out of proportion to musculoskeletal symptoms implies Bartonella/BLO. Drug of choice for that is Levaquin or second choice Rifampin. One approach might be to add flagyl to mepron and zith for instance. Another would be Levaquin with flagyl now and mepron with zith later, many LLMD's treat Lyme/Bb first, Bartonella second and Babesia last.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
It's hard. I nearly lost my job this past winter due to cognitive issues from the prior year.
Luckily, I started LDN and it seems to help some, as does getting enough sleep, etc. Some of the supplements help, too - see Burrascano's guidelines for suggestions.
It's hard if it's just you. I don't have a spouse, etc., so trying to keep my life going and get to work each day is a bit of a challenge sometimems.
I'm not really treating the Lyme & Co. much right now, just with herbs. The herx I had last fall was so horrendous that I won't be able to work if it happens again. I am going to start with a new doctor in a couple of months, and see if we can come up with a plan that isn't going to put me out of work.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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