This is topic How many of you work??..and how do you manage?? in forum General Support at LymeNet Flash.


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Posted by Florence1 (Member # 22960) on :
 
I have been off work nearly 4 months and financially have to go back in the future.....but honestly dont know how i am going to do it....i'm on my feet most of the day, 5 days a week, I get up at 4.30 am to go to work and have 2 children to look after straight after my work day is done.....it fills me with fear to think of it and how its going to work out or not......i'm so fatigued, with muscle pain....dont physically think i can do it right now...what is the future going to bring......just wondering how you all do it............
 

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Posted by Fordace (Member # 14874) on :
 
Hi, I don't have any children, so I cannot compare myself to you. I am still working through all of this the past 3 years. If I feel terribly ill at work. I am allowed to leave. My boss has given me free will, they know I will be there everyday otherwise, and I do not call in sick unless I cannot walk. My commute is only 15 minutes, so it's not an issue. Hang in there Florence...Prayers for you....Richie
 

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Posted by djf2005 (Member # 11449) on :
 
I have been disabled 2 out of the 3 years I have been ill w/ acute symptoms.

One year I was in remission and returned to work which was wonderful.

I am grateful to have a supporting wife and disability supplemental income.

Without those two, I wouldn't be here.

Hang in there.

Derek
 

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Posted by bv (Member # 9578) on :
 
I don't know how people work through this disease. I had worked for 35 years before I got LD & then for 6 more years before I was diagnosed.

The last 4 years i was really struggling & just couldn't understand why things that had been so easy a few years ago were now so darn hard. i retired 5 years earlier than I planned because of LD.

I consider myself lucky I was able to retire---I can't imagine working, taking care of 2 children & fighting this nasty disease.

Good Luck.
 

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Posted by Wonko (Member # 18318) on :
 
I took about 11 months at part time once I began treatment and just recently returned to full time. It is extremely difficult, I use my leave as fast as I earn it and feel guilty all of the time about how poorly I perform.

I don't have children, I started to get very sick immediately after finishing my highest degree.
 

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Posted by seekhelp (Member # 15067) on :
 
It's impossible to a degree with neuro Lyme. Most of us aren't lucky enough to be awarded disability.
 

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Posted by LymeLearned (Member # 20565) on :
 
I worked so long after I should have been disabled that I was sleeping in my clothes and slamming myself together the next day only to do it all again. I barely survived.

Finally my doc put me on state disability, but by then, I was so disabled. You always hope to be well enough to have a quality life after relieving the load by not working, but I can't even much care for myself anymore.


Anyway, state disability for 12 months is easy to get, but if you think you won't get better (which I was foolishly optimistic), apply for fed disabilty immediately because it takes a year to get.
 

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Posted by springshowers (Member # 19863) on :
 
i have not worked since year 2000. I was so acutely ill and bedridden and applied for SSDI immediately and got it .. I did not even know i had lyme then and went off my "disabilities" . I was not able to get out of bed. I had many doctors I was trying to see to help me and my SSDI went through without a hitch luckily. Its not much though.. I was foolish to not have disability insurance on my home business which was making six figures. Ugh.. Hindsight.. is 20 20..

Ido not see myself working in the near future. Even if I get better enough I am going to give my body time before I put it to work. if you know what i mean.
 

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Posted by MDW005 (Member # 22706) on :
 
I used to work 55-60 hrs a week and have children

and home chores.

Not any more work for me. Still have the family and

house work.
was in the medical field and taking care of other

people, now I have to take care of myself for a while.

I Dog sit for people now and this brings in good money.
And when I dont feel well the dogs lay around me and
seem to know I dont feel well. Its comforting
 

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Posted by abigail (Member # 14936) on :
 
I still work. I only had this crap about 6 months before somebody clued me in so I have been keeping it down with antibiotics since then which has been 3 years. All I can say is I thank God that person was there for me. She saved my life.
 

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Posted by sutherngrl (Member # 16270) on :
 
Unfortunately I was so ill to begin with, that I only lasted 5 months after becoming ill and that was a huge struggle for me. I had a wonderful job that I had had for 8 years. It was a very sad day when I had to quit. Devastating actually. I haven't worked in over 3 years now.

I am still in no shape to work. I wouldn't last a whole day. Its very sad that many of us are so ill that we can't work, yet they refuse us disability.

I'm fortunate that my hubby has a decent job with good insurance. But I miss the feeling of self confidence that comes with working and achieving. Now achievement is cooking a meal or doing a load of laundry.
 

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Posted by Florence1 (Member # 22960) on :
 
most of your posts are what i expected really....i have been an RN for 19 yrs...and really struggled this last couple of years to carry on then this year was the last straw, then i found out why...the lyme......I just cant see ...at this point.....how on earth I can do it all.....I carry the insurances as my husband has his own business...that is my sticking point.....i feel like i am letting them down if we dont have my $$......but I again at this point just dont see how I am going to do it........
 

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Posted by angrob75 (Member # 16942) on :
 
I am still trying to work but it is killing me for sure.
I have been sick for about 6 years and in treatment for the last year and a half.
I also do not know what to do.
We need my income but i feel like i am killing myself.

I used to be able to work and do some chores, not now. I can not drive anymore and have not for the last 6 months. My hubby has to take me to work and pick me up. I lay down in the car on the way there, at lunch time and on the way home (if i can make it that long). I then crash when i get home.

I can not cook dinner or do very much cleaning anymore. If i get through work and maybe a load of laundry it is a good day.

I feel like i am only living to get through those hours at work. I know i should quit and take care of myself but how in the world do you make that decision if you need the income.
I feel like if i give up that i have given into this terrible disease.

What do you do?
 

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Posted by Lymeorsomething (Member # 16359) on :
 
Like Fordace, I've worked all the way through and it's been extremely difficult. I feel if I quit it would be near impossible to work again unless I was able to finally figure out my health issues.

What's worse than work is the interview process...so grueling and unpredictable. I could never deal with that right now.

I look normal so I just keep the chin up and plug away. I have no energy for a social life but I can get all the meds I need and I make sure to get my workouts in.

It's not easy but the alternatives are not pretty. Working is a good distraction and gives me some sense of stability even though my health is still a big ole question mark.
 

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Posted by julielynne4 (Member # 20336) on :
 
Every individual on this board (and anywhere else) has a different experience and situation with their lyme. Obviously, if one is bedridden they could not work.

I am still teaching, and some days/weeks are hell, and I call in or leave if I just cannot deal. I have children as well (4 of them) and a husband, and some days I literally do not know how I will make it through.

However.....I always DO make it, thank God. I love my job (which helps a lot!) and I have to plan well - which is NOT something that comes easily to me.

Brain fog is horrible, I have all kinds of neuro symptoms that effect my work. However I am able to do it, and I take days when I am feeling like there is no way I will ever be able to make it.

Like you, I have fatigue and muscle pain. Sometimes the fatigue is crushing, and I do what I have to in order to make it through - get some fresh air, have a cup of coffee, etc.

I understand your fears - I can relate with it and it is an overwhelming task to work full time (or part time) and then come home and take care of the kids. It is too much some days, but I wouldn't change a thing...(except, of course, my health and my kids' health.)

Because I am working, I am so busy and cranky and tired in the evenings that I do admit I get depressed thinking that I am a horrible mom, since I feel like I spend every waking moment DOING things and never have time to just BE there with my kids. When I do have a few minutes, all i want is SILENCE.

Anyway, I think we are all in a different place but we all can only do what we can handle. We want everything to be perfect (well, at least we want to be good parents) and that is so hard and unrealistic. But, rest assured, if and when you DO return to work, you WILL adjust and do just fine.

And if it turns out you are simply too sick to work, you will figure that out too.
 

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Posted by Limeaid (Member # 22357) on :
 
I have been unable to work since last summer,

except for a short period when I attempted to

go back to work and it was just too much, and

too quick. Florence, I am an RN as well, and

my job is one which I run around and do

procedures during my 10 hr shifts. I love being

an Oncology nurse, and I really miss it!!!

I'm hoping once I have my appt with the LLMD

in NY I can begin to go back to work part-time

if I'm starting to feel better. My husband and

I cannot survive on one income, plus I carry

the insurance for the both of us. There is no

way I would have been able to work the past 6

months.. I hope that the new year brings us

all better health!!
 

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Posted by Florence1 (Member # 22960) on :
 
thanks all.....i think this year is going to be another year of changes.......my problem is too that i dont have a llmd, my pcp has been very good but i wonder if were hitting this right....perhaps a llmd may make things a little better although $$$ restict me from seeing an out of pocket dr.....limeaid..are you on std then???....
 

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Posted by Nicole_Denise (Member # 20620) on :
 
Hi Florence,

I was working from January to September of 2009, and I am now in school. I'm not going to lie- it was very difficult. I dealt with it by just doing one day at a time. I was exhausted and in pain, but worrying about how I would do in a week or a month just added to my stress, so I tried to focus just on the current day, or maybe the current week.
 

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Posted by catskillmamala (Member # 12536) on :
 
When I first went back to work it was very touch and go. This is what I did:

1) I did absolutely nothing on my days off so I could rest.
2) I did everything I could to ensure a good night of sleep
3) I made sure I had healthy snacks with me all day so I could eat if I needed energy

I hope that helps.
 

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Posted by seekhelp (Member # 15067) on :
 
Anyone able to work full-time when anxiety is a big component of your illness, especially problem driving?
 

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Posted by lymeinhell (Member # 4622) on :
 
Yes, I did. I carried essential oils everywhere with me. And when I would start to get anxious (which would then make me dizzy and panic), I'd stop whatever I was doing, put a few drops of oil in my hands, cup over my nose, and breathe deep until I felt like a human being again.

I worked all through trying to get a diagnosis, and through treatment. I missed more time while I was trying to get diagnosed than during treatment (although I think the first 10 days on abx left me flat on my back for about a week).

I was fortunate that I was able to do my work from home if need be, and on the days I couldn't drive my hour commute and I needed to be in the office, my husband would drive me. It wasn't pretty, and many days I should never have left the house. But somehow I managed to get my work done (and correctly somehow??)

Although those were some really trying days, I do have to say that once I got to work, the distraction of focusing on something other than my illness seemed to keep symptoms at bay for several hours. I would crash and burn when I got home. I was/am very fortunate to have an extremely supportive spouse.
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
I haven't worked since 2000, just like Springshower. I worked until my body broke down. I passed out trying to climb the stairs to enter the building and they called an ambulance.

I vowed never to torture myself again like that and refuse to return to any type of obligation until I know my body can handle it.
 

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Posted by sutherngrl (Member # 16270) on :
 
Well it took me 2 years to get past the guilt of not working. It was devastating to me; and I say if you can somehow manage to work, then its better for you mentally to do so.

My fatigue was so severe that I would literally collapse across my desk and on my lunch hour I would lay down in my car. The resting never helped and one day I left early, never to return.

That was the beginning of a sad new journey for me.

On a positive note, I finally don't feel that guilty about not working anymore.
 

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Posted by Florence1 (Member # 22960) on :
 
as i said before i half expected the responses i got but it makes me feel quite sad to read them...and know that really your life changes in such a dramatic way with this and how many people have struggled and continue to struggle for some sense of normality, if possible. I just hope I can get through this without my family having to suffer if I cannot do a physically demanding job......
 

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Posted by txgirl09 (Member # 21612) on :
 
I have worked as well throughout most of my illness, except when I was in the hospital in August. Granted, I have "only" been sick for about 6 months.

I do get tired, and I do not always work full days, but I can agree with some of the others that once I get to work, I get so busy and it takes my mind off the stress of lyme disease.

When I get home though, I have 2 little children needing my attention so I do not get a lot of rest at home. I could not do it without my supportive husband. I believe it makes all the difference in the world.
 

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Posted by peacemama (Member # 17666) on :
 
I work, with some big breaks. I teach for one and 1/2 hours on Monday. ANd then I am flattened for a couple of days. I get up, prep for the next classes on Thursday, and then after I teach all day, I am flattened again (cant take care of the kids -- nothing) until Saturday.

I have winter break for a month and spring for a week and summer I only teach week long classes and just a few (for 1 1/2 hours a day).

I fake it. My family life suffers. I am a raging b*tch. But I do it because we need the money. My hubby thinks I would heal better if I don't. . but we just can't do it. However, I do love my work, and I feel better after I teach (yoga, that is), but when I teach all day on Thursdays (kids - language arts) I don't. But the two jobs keep me going. FWIW, Sometimes I think they are keeping me alive. Some sense of purpose, other than my kids that I often think I'm failing. My students love me -- and they help me survive.

I just keep going. Been sick for at least 24 years before dx.

Doesn't OBAMA have something in the works about Cobra becoming more affordable? Maybe looking into that would help?
 

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Posted by aiden424 (Member # 7633) on :
 
There is no way that I could work. I had three little kids at the time too. I don't know how I survived, maybe by the grace of god. I used to lay in bed and think maybe I was in hell.

I was so sick that there were times I had to crawl. I finally had to get a wheelchair. I never in my wildest dreams thought anyone could get this sick and survive.
 

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Posted by frank789 (Member # 22505) on :
 
I feel very fortunate. Like abigail, I went undiagnosed for only 6 months. I still work full-time and ski 3 times a week. I just hope things don't get any worse to the point where I would have to quit my job.
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
Aiden, I know "exactly" what you're talking about. You literally feel like you're dying, but death either never comes, or it comes so slowly that everyone thinks you're fine, even as you lose 75lbs.

I got down to 125lbs, and I was a big guy. People still kept telling me how great I looked. ****in' wackos, seriously. People are insane. I was anemic, protein deficient, I had more than 7 untreated infections that coincidentally none of the morons could find, and I was still going to work. I fought to the bitter end.

Today I'm still fighting, only now I don't bash my head against a brick wall. I know when pushing hard is productive and when it's a waste of time.

If I had to I could work for probably about 2 months if I pushed (pretended I was normal). The inflammation would gradually build and cause crippling flare-ups that would destroy my intestines, brain and other organ systems. The inflammation eventually would become acute, sending me to the ER for steroids so that I didn't die.

That would be the result. By staying home, I can rest constantly, and keep the flare-ups under control by not antagonizing my immune system. Pushing hard just ends in failure. I've tried probably hundreds of times over the last 25 years. The end result is always the same. Working harder won't solve this problem. Working smarter will. My focus is exclusively on taking my medications on time, researching the illness, networking, and experimenting. Something eventually will give if I keep searching.

Relationships are secondary, and to be honest I could care less if I disappoint anyone or fail to meet their expectations. If I don't return your call for months, oh well. If I isolate and don't go outside or eat dinner with you, oh well. If I'm depressed and stay home watching movies or playing Xbox all day -- oh well.

Work would be great -- if I could find something I loved and was healthy -- but I'm not healthy, and I never have been. That's the reality. Employers have deadlines, responsibilities, and their own self interests, and I understand that. As much as I say "Oh well, too bad" -- they have to do the same thing when they "let me go." Life ain't fair, the world ain't polite, and your feelings really don't matter to Lyme Disease. It doesn't give a **** about anything or anyone. It's goal is to survive, and use your body like a marionette, dragging you around, making you do and say things you don't want to do or say. It even makes an unfortunate few (1/3rd of us), want to die, or actually follow thru.

Controversy, suffering, unjust, unfair, oh well, if people don't get it, too bad.

Now if I was stuck like so many of you, and had no choice but to meet responsibilities, such as caring for children, it wouldn't matter. Eventually I would break down and die, so I'd be screwed. As far as my belief in a higher power coming to save me, he/she/it/whatever hasn't answered my prayers in 25+ years, so I don't expect magic man to show up now. I believe the only one who cares unconditionally about me, is me.

Ah, I feel so much better getting that all out.
 

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Posted by Florence1 (Member # 22960) on :
 
metallic blue.....thank you for writing that....honesty is refreshing and probably how so many others feel but cant actually say it.....
 

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Posted by aiden424 (Member # 7633) on :
 
Sometimes you don't get exactly what you pray for. I used to pray, in the beginning to please, please let me get better. Then I just started praying to please give me the strength to get through this day.

Well over twenty three years later I'm still here, still sick, still married, kids grown, and with three gorgeous grandchildren.

I don't know how I made it all these years. I discovered I had more strength then imaginable. I got to see my kids grow up and was blessed with three wonderful grandchildren.

I still pray every night for the strength to get through tomorrow. So far, my prayers have been answered.
 

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Posted by lymie_in_md (Member # 14197) on :
 
I had been sick for about 3 years. I was lucky to be able to continue working. MB, I didn't have to climb ladders, just had to find my chair. I've been able to survive in my job during some trying times while trying to find a cure. There is an advantage to being a computer geek, not on your feet alot, your in your own world anyways, the EMF isn't so great though. I hated the carpal tunnel feelings when it was difficult to type and difficult to concentrate. Or looking blankly at your screen trying to struggle with your brain to implore a new thought.

Now that I'm in remission I have no problems working. I know many others can get well as I have, we just have to keep working together to arrive at a solution.
 

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Posted by elley0531 (Member # 9434) on :
 
I worked during my relapse three years ago and am working now with the exception of being in the hospital for a week before xmas.

I get the anxiety, and try to watch my breathing as much as possible.

My fiance is incredible with this, he's never seen me sick liek thsi before, and the first week I pushed him away quite vehemently. I am getting over that and allowing him to help me, and working helps me keep sane even though it hurts and I am so damn tired.
 

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Posted by julielynne4 (Member # 20336) on :
 
We all have to make decisions that are the best for each of us. Last year when I was at my worst, I just layed in bed and every time I closed my eyes I thought for sure that I would never wake up.

Thankfully I was able to make it through that, and now, although I am feeling miserable, I can function enough to teach.

I don't like days like today, when I get home from work and it all crashes in. I feel like I can't walk or do anything around the house. I have to get off of this couch and feed my kids and the thought of it is overwhelming.

Then I dread bedtime because one of my children who is 6 (also with lyme) has so many neuro issues that she takes hours to fall asleep. Then another daughter wakes up and I feel like I am up all night dealing with their wakefulness.

I guess I just felt like whining a little (sorry) But I do enjoy my job, love my students and like the poster above, I feel like somehow my symtpoms are "at bay" a little when I am at worK.

Thank God for that! j
 

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Posted by jmb (Member # 18338) on :
 
I never missed an entire day of work. I went to the doctor a lot. I went to LabCorp a lot. But I never called off. I am proud of that because I felt like I could die at all times.

I would go to work and keep a low profile. I hid out. I am not better yet but the trend is up. I don't hide out anymore, but I still have times where I am just beat. Those are the times I need a GIANT coffee to make it through.
 

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Posted by Parisa (Member # 10526) on :
 
Everyone has different disease processes and different job responsibilities so you can't lump everyone together.

My husband luckily has a desk job and understanding bosses. He did however have to go out a couple of times on long term disability when he became severely debilitated. The minute he could though (and before I thought he should), he would go back to work.

There were times I wanted to cry when I would see him walking into his office barely able to stand up straight where a stray wind could have knocked him over. He persisted though and he thankfully still has a job now that he is better.
 

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Posted by elley0531 (Member # 9434) on :
 
Yeah the only really horrid thing for me is the fatigue as far as work-oh-and brain fog!! I have bad short term memory right now and have to write down everything. I work in nyc but ,live in NJ so I have to wake up at 6am which is awful in the winter. I feel like I don't see the sun and don't really have energy to go out on my lunch break. This morning I was walking from Port Authority to my building and I felt like that horse the Scarlett O'Hara was whipping to death in Gone With the Wind. Just on the verge of collapse. I know its not healthy, but right now this is what i ahve to do. If it becomes a severe issue I will consider something else.
 

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Posted by merrygirl (Member # 12041) on :
 
I was working one day and felt really off. NExt day woke up and was on my death bed or so it felt. Never worked again. I dont know how you guys do it.

I have to rest for at least 30 minutes every hour. The pain and fatigue are so bad I know I could never work until I get over this. Last time I worked was may 2007. I dont forsee me working anytime in the future.

I sure hope I am wrong!
I barely can get through the day having 2 small kids.

good luck to everyone
 

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Posted by djf2005 (Member # 11449) on :
 
For those of us that are able to, kudos.

For those of us not, keeping faith that we will return one day is essential.

I agree w/ Seek. With some of us, work is literally impossible in every sense of the word in our current state/s.

Those of us that have pushed forward, I am jealous and wish I would have lasted too.

When I became sick acutely three years ago, I kept going back to work day after day only to get worse and at the time, not knowing why.

Now I am waiting, resting, researching, and biding my time.

With enough time, and the right treatments, exercise, and attitude, we can and will return to normal lives.

I firmly believe this and hold onto that, because w/o it, what existence is this?

Mike, nice post by the way. (xbox all day, lol, I can relate). I can only imagine what it's been like for you your whole life. It's only been 3 yrs for me and seems like an eternity. All I can say is keep keeping on, and everyone else too.

Best

Derek
 

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Posted by David95928 (Member # 3521) on :
 
I have been able to work all the way through. Fortunately, I work at a university and get long vacations that I can use to get charged back up. Also, my response to treatment has been unusually good. At this point my only antibiotic is Bicillin three times a week. I also take B Complex for fatigue and magnesium for spasms.

[ 01-06-2010, 09:22 PM: Message edited by: David95928 ]
 

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Posted by motownlyme (Member # 11485) on :
 
I'm working against the advice of my LLMD and against my husband's wishes. They just don't seem to get that I can't pay the Dr if I don't work.

I have had several terrifying episodes recently and one occurred today in front of my boss. I think he caught just a glimpse today of how bad it really is.

I try to hide it the best I can. I smile a lot even when I'm in terrible pain and feel like I'm about to pass out.

I'm afraid I'll lose my job and then that will be it. I'm doing it but my job performance suffers and I'm suffering more. I'm afraid I'm going to be like the person who posted that they passed out going into the building.

I really want to tell my boss how bad it is but I'm not supposed to tell him my condition. I feel so stuck. Husband and LLMD yelling no work. Me fighting them and trying to work too. Just don't know what to do.
 

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Posted by CD57 (Member # 11749) on :
 
i was working until October when I realized I really needed to take time off.

I used to be successful in corporate America, working for high profile search engine companies and in very stressful situations. That may well be part of what launched this *&()& up illness.

I have come to accept that I cannot ever do that again...so I am going to re-invent myself as someone who must have a low stress career. Whether this means a receptionist, a hyperbaric oxygen chamber attendant, an Xray tech, a position working with kids...I dont know. But whatever it becomes, it's not going to be like it used to. And that's ok. I've quit beating myself up about it. I'd love to be a postal clerk, but those jobs are hard to get!
 

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Posted by f13girl (Member # 23844) on :
 
Just told my boss today I was really sick and may need LOA for medical... it was really tough - 26 years with the same fortune 500 company. I've worked mostly from home for last 10 years with some travel. Now I can't even do that! Brain fog is too severe-problems typing/talking/articulating. I can't possibly lead discussions ( my job is mostly on the phone all day and lots of typing/cognitive work). And now way I can travel right now/manage that and meetings. Very discouraging since my daughter will be starting college in the fall and I wanted her to go school of choice not based on price!!!That and I pay all so much out of pocket for medical care.. i need to work to afford my medical! (Especially if I know embark on the abx journey). At least my husband has a good job for now...I suppose things could be alot worse. Just difficult letting go of who I am/plus I need the interaction . What am I going to do all day think about my illness/and get further depressed/but can't function right now. I was a top performer and I agree to another post the stress of the job probably contributed to my illness all those years. Really hard for the type A I am , to let go............
 

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Posted by Florence1 (Member # 22960) on :
 
f13 girl....i am sorry to hear that it has come to this for you....but what i have learned from these posts is that ultimately you have to look after your health to get back to health....I wish you luck.....
 

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Posted by sixgoofykids (Member # 11141) on :
 
Moving to General
 

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Posted by Florence1 (Member # 22960) on :
 
no problem......apologies if it caused an issue.....
 

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Posted by Bridey79 (Member # 24197) on :
 
I came home early today because I felt so fatigued that I was about to spew. Everyone comes up and says 'Wow you look horrible!' and you feel bad complaining all the time so you put on a brave face and lie when on the inside... You're dying. It's so hard not to get down when you are so exhausted all the time.
 

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Posted by daphnesmom (Member # 22267) on :
 
In 2007 at time of dx, there is no way in the world I could have worked, I could hardly walk. I am way better now, but still not symptom free. I had pretty good days, and some not so good days....overall better though. I am still in treatment, currently still switching up abx, possibly going on herbals, or rife. I still don't have enough confidence in my days, to make any commitments to work. I have pretty severe herxes, so I never know what it in store, with each protocol change.
 

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Posted by JR (Member # 16898) on :
 

quote:

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Originally posted by seekhelp:
Anyone able to work full-time when anxiety is a big component of your illness, especially problem driving?

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