GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I am having a heck of a time continuing to work while undergoing treatment for lyme. But I have been so sick with misdiagnoses over the last 11 years and have missed so much work in the past, that I am scared to take sick time for fear of being laid off, or fired.
My company is restructuring currently-I am trying to stay squeaky clean. So I drag my exhausted butt there M-F and pretty much zombie-zone through the entire day. In my local support group, only one other Lymie (recovered), is working, all the rest are on disability.
I realize that I will heal/recover faster if I focus on resting and sleeping instead of the old M-F grind, but I am not in a position financially to do so. I just wanted to start a thread where we can support each other while trying to stay employed/gain employment while fighting this infection.
Honestly, I need as much support as I can get, as I am right on the edge of being unable to fulfill my job requirements and every day is a struggle to keep my head above water. I work 40-60 hours per week, and commute 1 hour daily. And I am EXHAUSTED!
There will be days when I really need your morale support to keep from breaking down and I wanted to buid this thread so I have somewhere to go on those days. Also, I am eager to hear what other people fighting infections do during their work day to make the grind easier. Thank you kindly for reading.
[ 06-26-2013, 07:31 PM: Message edited by: GretaM ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
This is a great idea for a thread, but you may want to edit the "L" word that rhymes with "Blimy!"
Members will take offense and your thread will likely go off track.
I tried to PM you, but you have the function disabled.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Greta,
If you have ANY inner ear or balance issues, you might be able to get special accommodation regarding lighting or other atmosphere matters at your workspace.
A place for nap, (time off the clcok) can also be arranged if you go to the HR person and formally declare a medical disability (do not say "lyme") . . . and that can be vague but if you might have an inner ear issue, much can be attributed to that so that more questions won't be asked.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
GretaM - I too work full time. My employer does know that I have Lyme and are willing to help me in anyway they can. So far I have not asked for help, yet . . . Saving requests for when this gets worse.
I work on the 2nd floor of a building, climbing the stairs is tough some days - no elevator. We hope to be moving into another building in Sept, it's only one floor - hoping the move actually happens then.
I have asked that they limit my travel while I'm on all these meds and diet. Traveling seems to tear me up - probably due to not taking meds like I should. When traveling, we work from sunup to sundown outside - no resturants, etc nearby. Makes eating properly with meds difficult.
I too am exhausted during the day - it seems to hit between 1 and 3 and lasts until about 8 pm. I have literally fallen asleep at my desk - once I realize this happens I get up and walk around the parking lot a few times to try to wake up. It helps, but only for a little while.
Hang in there, thanks for starting this thread - we who are still working need each other's support and ideas.
Posts: 250 | From East Coast | Registered: Jan 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
BoxerMom and Keebler= Thank you for letting me know that the word, "Lymie" can be inflammatory for some. It is one of those things that one doesn't realize until it is pointed out.
Thank you for doing so in a kind way. I have changed the heading name and edited the content of my original post...hopefully I didn't miss any L words.
I have a thing for aliteration, but I couldn't think of anything that starts with a W to go with Work. haha. If anyone can think of some catchy phrases to do with work and fighting this infection, I would love to hear them! I could sure use a laugh today.
Hi - breaking up the text into a couple lines at a time to make it easier for many here to read it - Robin123
[ 07-05-2013, 04:02 PM: Message edited by: Robin123 ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi jjourneys. So good to hear from you. I sympathize with climbing stairs. Sometime each step feels like a mile... I hope the stairs have sturdy railing on them to help you on your rough days.
My immediate boss is aware that I am infected with Lyme, and he and my immediate coworkers are very supportive of when I black out, forget where I am, forget who they are etc.
I am lucky in that way because I can droop around and slur my words and nobody accuses me of dipping into the sauce while on the clock. haha.
Thank you for joining this thread. I hope that you have had a good day at work today and don't feel too exhausted.
[ 07-05-2013, 04:00 PM: Message edited by: Robin123 ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure to talk with your area lyme groups and also your national one, for suggestions at work that may be more specific to Canada.
Canadian Lyme Disease Foundation -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Today started out with a terrible sleep last night. Deep bone pain and muscle twitching.
Anyways, I dragged my butt out of bed, went to make my lunch and dropped an entire container of Kefir on my sock and pant legs and all over the kitchen floor.
Cleaning that up and changing my clothes made me have no time left for breakfast, therefore couldn't take my abx (argh). I took them at coffee break but then it was 4 hours later than usual, and has thrown the rest of my abx/supplement/probiotic schedule off.
Anyways, to sum up today... I felt on the border of a nervous breakdown. The maniacal laughing is my first clue.
How was everyone else's work day?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Keebler. Yes, please delete posts around the terms. That would be wonderful to streamline this thread. Mr. Bean was hilarious-thanks for that, and also thank you for the links on tinnitus and adrenal support. I found lots there to continue researching. Much appreciated. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That laughing can be adrenal exhaustion but also nervous system being overwhelmed. Hope you can rest tonight. -
[ 06-27-2013, 08:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Stairs - yes, we do have sturdy handrails - I use them most of the time these days, I seem to trip and fall going up or down the stairs for some reason.
My co-workers and boss are also aware of my Lyme. They have been very good about it. We laugh about my use of wrong words or forgetting their names, etc. Luckily, I have a great sense of humor and I don't mind laughing about it.
Taking meds at work is difficult. I take some at 6am as I walk out the door. I heat up Gluten free pancakes my husband makes me on Sunday for the week so I can take my morning meds.
I tend to space out 3 different ABX over a 1 hr period with food (keeps me from getting an upset stomach) - on days when I am in meetings all day long, I usually don't have the opportunity to get all my meds in. I do what I can - that's all I can do.
hang in there all - we will make it through all this!!!
[ 07-05-2013, 04:00 PM: Message edited by: Robin123 ]
Posts: 250 | From East Coast | Registered: Jan 2013
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GretaM
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Member # 40917
posted
Happy Saturday to everyone! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi All, It's been one of those weeks. It's a week of being OFF the tindi, and this week has been very painful. The last week I have been falling asleep at 6PM. I am so grateful for the weekend to rest my sore bones. Hope everyone else has had a good week and isn't too exhausted.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi all.
I phoned in sick today. I am feeling quite guilty about it.
But the bone pain kept me awake most of the weekend, and my period has derailed me.
I hate this.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi Greta. This a great thread. I treated for 2 years while working full time and felt I should have gotten a medal. But no one else really saw it that way. I was fortunate that I could work from home when I absolutely had to. And no one really cared when I got in as long as the work got done. I had moments before I was dx'd that I would lose and mis use words (and I write got a living) I really thought I would have to go on disability. But we were going through change too and I was petrified that my job would not be there for me when I was done... And knew that after 25 years being un dx'd I would always need a job with this sort of flexibility. So I dragged myself in most of the time. Made up what I couldn't do on nights and weekends when I could.
Do you have any flexibility at your job? One of the things they helped me the most was not having to set an alarm clock . If I let myself fall asleep knowing I did not have to wake up at a certain time I slept better and woke more rested. I often woke at 9am... But that helped me get through the day.
Don't refuse pain help if your doctor is offering... Or ask. Pain can be so draining. And Lyme pain is constant. Sleep aids can also help. I know it's controversial. But ambien changed my life, and I believe helped me heal.
And don't best yourself up. If Lyme isn't a legit use of sick time I don't know what is.
One thing I really had to accept (and my husband and friends too) was that pretty much all I could do was work and the other things that were absolutely necessary. Housework was not up to my standards, my dogs were let out more often than walked. And social events fell by the wayside or cut real short.
Know that it does get better. And prepare for the ups and downs. My hardest times were after I had some good days and then crashed... It just seemed so unfair.
Posts: 1728 | From USA | Registered: May 2011
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posted
thank you Kudzuslipper - glad to know others are dealing with working and lyme and how we're dealing with it.
My company just started a new "teleworking" policy 2 wks ago - knowing this has alleviated a lot of stress of the unknown treatment and symptoms ahead of me.
Luckily, I have always been allowed to work from home or make up time as needed at home before I even knew about "Lyme".
thank you.
Posts: 250 | From East Coast | Registered: Jan 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi All,
I wish my work was more flexible regarding the working day. It would be easier for me to go into work later. But they don't and won't consider modifying my work day. If I go on short term, then when I return, I can work a modified day. But they won't modify the day first. Which I think is silly, because a modified working day could very much prevent the need for short term leave. I had to stop my abx because of diarrhea, so I have been on just Tindi for the last week. Yesterday I had a terrible lyme flare, which spread into today. The head pain and pressure was too much, so I stayed home.
Today would have been a good example of me going into work after the lyme flare had receded to do my work. I would be working into the night, but still would have put in my 8 hours and got my work done.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Does Canada have a federal disability policy office? I was about to recommend the AskJan website, which has a lot of FAQs about reasonable accommodations employers should make...but it applies only to the US. Tree
Posts: 146 | From South | Registered: Aug 2012
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posted
GretaM - I'm sorry they won't work with your schedule. I'm somewhat flexible with work hours, luckily I can make up time missed from home. My work day starts at 6:30 am. On bad days I have called it "late" and got there by 8am.
Hoping your flare goes away soon!
Hang in there!
Posts: 250 | From East Coast | Registered: Jan 2013
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GretaM
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posted
treeinatree-that is a good question. I'm not sure, I will ask around. Thanks Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
jjourneys-Your work sounds like a very understanding work place. That's great
I think I am going to try to arrange a nap room at work. I wonder if having an extra hour of sleep during the day, will even out the feeling of sleep deprivation would make the 5am easier.
Do any of you have problems with fluorescent lighting bothering your eyes? Are there and screens etc. for computer screens that you are aware of?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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desertwind
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Member # 25256
posted
This is a great thread. I work for myself in private practice which is both a good and bad thing.
Part to 3/4 time but I need to schedule in such a way where I have long weekends and work Tuesday/Wed/ Thurs. I cannot get up early so I scheudle clients mid afternoon to early evening.
I do find heightened anxiety when I am not feeling well thinking..."How am I going to make it through the work day tomorrow." I find that sometimes my anxiety about it is worse then the actual work time.
My office is not healthy and I find black dirt/dust coming out of the air/heating unit above my desk so I have an air purifier. I find just being in my office makes me feel sick and I get a MCS reaction at times. I am out of there in 2 weeks....
I do have problems with the flourescent lights but because I have a private office, I have my own lamps with natural lighting and shut the overhead fluor. light off.
Yes, regarding the computer screens. I have one that takes any glare away as my eyes are very senstive. Check your refresh rate as well - the faster the better as it is more difficult for the brain to percieve it. Changing my refresh rate helped alot.
I am lucky in the sense that I have a couch in my office (I'm a Therapist) so if I need to take a lay down in between clients I can do do.
Working during a flare or a change in meds is so tough though.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
GretaM - Yes, they do make screens to go on your computer screen to help with glare, etc. I believe they are fairly inexpensive. I do not have any, neither of my monitors seem to give me a problem - but some people swear by them.
Flourescent lights - they also make a grid like screen that fits into the fixtures. I do have them on my lights! They are a life saver as these types of lights drive me crazy. I've learned to ignore the noise they emit - but they do produce migraines for me. These screens are great!!!!! Easily installed. Not sure the cost.
Posts: 250 | From East Coast | Registered: Jan 2013
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If you are getting up that early at 5 am, you definitely need some nap time, I don't know what your situation is, but napping helps reduce stress, immune system help, etc. If napping room not available, is there a place you can stretch out for 20-25 mins with a dark cloth over your eyes ? I've don't this in my car at a park nearby when no nearby nap place available.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
I to get up at 5am - in the office by 6:30. I would love to take a nap during the day! That would be heaven! Not possible for me though. I just have to tough it out, take short walks around the parking lot and drink more coffee!!!!
Posts: 250 | From East Coast | Registered: Jan 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Thanks for the great info on the screens for fluorescent lights and monitors! If I could filter out fluorescent light pain, that would make a big difference in my head pain.
I don't have anywhere dark or quiet to stretch out... But when the weather is cooler I will go to my car. Great suggestion!
Thanks And have a good weekend everyone Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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