CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Yeah, I went back to work after about 10 months of treatment. It was hard. Methylcobalamin B12 shots twice weekly helped me make it through in addition to abx. I also take catnaps during my lunch hour to get me through the day.
You have to plan carefully.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Cheryl sorry to hear that! 10 months wow, seems like forever to me. My mom is pressuring me to quit working but I just don't see how I would swing it financially.
I'm at such a loss and it is causing severe depression for me. The not knowing what to do is the hardest and having no definitive answers.
My mom says quit work, go see the specialist in Western Ma., Do this, do that...Do I bite the bullet, hit it hard and pray for the best or take it slow and steady and try to keep working and cut back on the meds when I feel too sick??
I have said this before and sorry for rambling. I am just so torn right now. I work with a girl with special needs and I would be devastated to stop working with her right now. Plus I have two children to care for so that plays into it as well.
My boss is very understanding and says whatever I need to do. I can't stop crying today not just from the pain but from the emotional part of it too.
Thanks, Ann
-------------------- If you keep doing nothing...nothing changes!
posted
"or take it slow and steady and try to keep working and cut back on the meds when I feel too sick??"
That's what I would do .. but I was "lucky" in that I was already disabled when I found out I had Lyme. I don't know how I would have continued working.
There are plenty here who do work.. maybe they havent' seen this yet.
Take care, Ann. Hugs to you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
I am working all the way through. Whenever I recalled the hardest, darkest days I went through, I can not help crying. This kind of feeling could not be understood by those who did not go through this.
I wish you could manage through this and wish you get more support to help you through this.
Posts: 27 | From MA | Registered: Jul 2008
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posted
After massive failure of trying to self treat for two years my first LLMD visit is next week. Appointment made in December for the first avaliable date!
I'm also very scared of not being able to work too. Theres the fear of not being able to afford treatment without a job and also the fear that i'll just go nuts and get crazy depressed and hopeless without the distraction of a job.
I'm hoping I can work through it by scaling back hours and working from home. I don't know if I'll be allowed to though and don't want to ask until I really start treating because I'm also afraid of not being taken seriously be my job. No particular reason I feel that way other than the publics general lack of understanding on the disease.
Posts: 526 | From NJ | Registered: May 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm still working. After I got sick I had to change jobs to something that required less physical strength. Also backed down from full time to part time (about 20-30hrs per week).
How do I get through the day? Honestly, I pray a lot. I know that I cannot make it through the day on my own strength. And it scares me sometimes when my brain is really bad because I cannot think clearly. But I have to work to support myself and to pay for treatment cost so I just do my best and pray. And somehow, God provides for me and I make it through the day.
There are times when I feel like dying but I know that I have to work so I just make myself go. And sometimes the pain is unbearable but as long as I can walk I will go, even if it brings tears to my eyes. I only call in sick if I literally cannot stand up because I will fall from dizziness/vertigo or if i've passed out from the pain.
I guess what i'm saying is Ann, you can work if you really have to. Just be sure to get plenty of rest during your time off.
And working might be a good thing for you. It is good to get out of the house and interact with others. I like activity and I like being with people so even though work physically and mentally drains me I think in some ways it is still good for me.
So, in the end, I guess I don't have much advice for you. Just hang in there. Do what you have to do. Hopefully things will get easier as treatment progresses.
Take care:)
Posts: 5237 | From here | Registered: Nov 2007
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posted
So sorry to hear how much you guys are suffering also. It is so heartbreaking.
I guess as far as working from home I could just do that if it came to it.
I work part time with a girl with special needs and part time doing Real Estate. I just do appraisals for banks and mortgage companies and I have a home office set up.
The working in Real Estate is how I contracted Lyme disease (while I was showing a property.) So I was trying to get out of that field.
I was actually in school to do Occupational Therapy but not now. which is another huge disapointment that I am trying to deal with.
I will have to pray and god will provide. I will need that reminder daily.
One day at a time and hey today is almost over and I made it!
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Each person's case is so different. Some are sicker than others. Also, the type of work a person does.
I worked all through lyme treatment. But, my work was not physical, it was mental.
It was a good thing because my main symptoms were extreme muscle weakness and horrendous fatigue.
I dreaded having to rise up from a chair. I could not stand for more than a minute or 2. I could only walk a short distance.
So, my job was such and my lyme symptoms were such that, with great will power, I could continue to work. I missed a lot of days, and I often could not make it through an 8 hour day. It was the hardest thing I did every day--to get out of bed and get ready for work. Since I couldn't stand very long, I had to sit down and rest twice while getting ready for work.
So, getting ready for work was the most exhausting thing for me. It was a horrible time in my life, looking back.
When lyme gave me horrible facial pain, I lived on narcotic pain killers AND maximum dose anti-inflammatories (Advil) under a doctor's supervision. Did that for at least 6 months. When it gave me tremendous abdominal pain for 10 days, I lay at home unable to go to work, living on narcotics.
It sounds like you have not tried prescription pain meds yet. Perhaps that is the key to you being able to work despite your symptoms.
I know other lymies that continued working that way--taking narcotics.
Also, I did detox throughout my lyme treatment. Lots of lemons and water (try to eat 4 lemons per day), raw garlic twice per day, various supplements depending on the complaint du jour, plus all the ones Burrascano recommends to be taken throughout. Maybe some of this stuff will help you have less of a reaction to meds. It did for me.
I had had a long career which gave me lots of sick time to my credit, so I was able to keep my job in spite of the crazy lyme episodes that made it impossible for me to work sometimes.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Only by the grace of God have I kept my job. I get a lot of sick days, my boss is amazingly understanding and I can sit most of the day and not talk too much.
I drink a lot of water, space out my supplements, take rest breaks or quick naps in back and just push through the pain or fatigue. I know that I would feel the same way sitting at home, but I'd also be bored on top of it.
My husband says I can quit any time I want, but we agree that I'm much happier when I can be out and doing something. I think it all depends on the kind of work and also how supportive your boss and colleagues are.
Posts: 236 | From Washington | Registered: Jul 2008
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posted
I have worked off and on.. Almost everytime I've worked since I became ill, I became worse. Put on bedrest or hospitalized.
I tried so hard, and gave it all I had. Took naps, ate healthy, drank lots of water, supllements, etc.... I didn't know I had lyme though until 2 years ago and havn't had a real job since except making phone calls for a friends company.
I felt kinda guilty about it because I'd sit on his couch and make these phone calls while hardly being able to sit up or hold my head up. I felt like I couldn't put into it what he deserved from me.
But he knew I was sick, and he was around some to see how I was working so I guess it was his choice to keep me despite the difficulties I had. I literally wasn't sure how much longer I could sit up, or talk on the phone.. And the noise in the phone hurt my brain and ears though I didn't know it was a symptom at the time...
I pushed through until he didn't need me anymore and havn't worked since..
I know it sounds crazy but I live by faith. I have no other choice and God has met most of my needs though it's hard to swallow my pride and let my friends help me.
I have moved every 9-12 months and thought I was going to be in a homeless shelter the beginning of the year because nothing was working out but God opened a door 1-2 days before hand and I'm living with a friend.
Not sure how long I'll be here. But I'm ok right now. Probably, hopefully at least 9-12 months.
I am continually amazed at how God meets my needs. And with so many people suffering with this disease, and others... I count my blessings but I guess it's hard to feel worthy of being taken care of when you can't contribute in the ways most people think of as contributing.
I think what maybe the hardest part of being sick is being so harshly judged. I have had people tell me they think I could try harder. And just so much judgement.
Ya get to a point where you just can't care anymore and don't try to jump through peoples hoops any longer becuase it only jmakes you sicker and them more judgemental.
I'm trying to learn to have compassion for the compassionless. It's hard because sometimes I just want to give them a piece of my mind, lol. Simply put, they just can't relate.
Probably tmi again, however I wrote all of this to encourage others. I'm sure you all have to lean on God to make it through this. Remember to trust God. Call yourself The blessed and highly favored of God.. I have found our words to hold power. ANd it's good to be around positive people too.
Please forgive me if I digress. I'm in the mood to say something for a change.. Just hope someone wants/needs to hear it...
Posts: 59 | From U.S. | Registered: Oct 2007
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posted
Before I was diagnosed I worked part time for about 6 mos and slowly built back up to full time. Once dx, and doing the LLMD trx, I was able to work, but I had lots of sick time I used up for the herx cycles and drs apptmts. For the most part, if you can physically work, do it. You need the income and to mentally know that you're not going to let Bb control your life. But if you're drag down feeling horrible, stay home and rest. But try not to let it become a habit of everyday, every week, where it affects your job safety.
Posts: 514 | From . | Registered: Apr 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Reading your post kind of makes me nervous.
My husband is out of work, and he hasn't been able to find anything yet.
I've been at home with the kids for 5 years, was just dx'd with Lyme and co. last week.
Now, I have been offered a FT temporary position reading PSSA essay tests. We could really use the $$$, but I'm wondering if I'll be able to handle it.
Also, it's about an hour's drive from home, so that's a concern too.
I'm supposed to decide by next week whether or not I'm taking it.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Starfall not sure if I read that right but I am wondering if they could overnight them to you then you could read at home and then overnight back. Not sure but seems like something you could be doing from home.
Also, I heard that internet jobs like med. tanscript and things like that have not been affected by the economy and are still doing well. Just some ideas. I am actually working from home today in bed on my laptop.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
posted
I am grappling with this myself. I have worked through 15 months of being undiagnosed and six months of treatment. I just don't think I can do it anymore. The work is too hard. All of my problems are cogntive (except fatigue. My job requires a lot of reading, writing, and anaylsis. I simply can't do my job. NO amount of telecommuting or cutting hours will help.
I am wondering if they will fire me (TF assures me they can't). I switched jobs just as things got really bad so they have no idea what I am capable of. I have a review coming up and I am not looking forward to it.
I just talked to HR about taking time off. I am going to talk to my doctor as well. Treatment, I think is working, but I am so much worse right now.
I also don't have the support of family and fiance to take time off. That is tough.
If you can swing it, and you need it, I would say quit work. Heal yourself. Fill your day doing things for others that you are capable of doing.
Good luck with your decision.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Ann, UnFortunately, your work will have to take 2nd place to recovery for now. If you are on good meds (& it sounds like you are) these flare-ups are very comon at first (Jarsch-Herxheimer reactions or "herxes") & you have to hold on for the ride.
The occasional small 'script', OTC meds & herbal remedies- to counter certain 'issues'- & possibly temporarily adjusting the dosing (Work with your doc!) are about all you can do for now.
On the weeks that are "better" such As the 3rd & esp 5th week on a new Lyme-fighting med, you might be able to work part-time, but early exhaustion & frustration is Quite normal. However, everyone herxes on a different schedule. You'll need to judge for yourself.
As for me, I was able to return to work "very part-time" on my 3rd month. But I really didn't get the energy to return full-time for over 1/2 a year. I'm doing pretty well nearly all of the time now (3 yrs out/ knock on wood) but continue w/ herbs, exercise & plenty of sleep.
Can you work with your boss along the lines of a medical "leave of absence"? Some are willing to do so for a valuable employee. And there's always "working from home" for certain occupations that would only req a couple 1/2-days in the 'Office'. Lyme takes tyme to get over. But nearly all will make vast improvements. HAng in there. -M
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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I am in the same crisis as you. I was just diagnosed a month ago and started on doxy 100x2 a day. Last week has been the worst week of my life! Never before the treatment i was so sick as now. I surprise myself everday when i wake up and not dead . Its horrible horrible horrible.
Yesterday my brother lectured me on how i should start applying at jobs since mine is ending in april. I couldnt tell him how sick i am that i dont think i can make to an interview or learn all sorts of new accounting if i get a new job . My brain is deep fried in lyme. I cried my eyes out too last night and kep crying till i started a bad headache and then got even more sick. Its very hard. I dont know if i can ever be normal again. I am not sure whats keeping me going. I have stopped doxy for past 3 days cause it destroyed my stomach. I dont even know if i want the treatment!!!
Take care.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I worked for the first 5 months of my illness. Didn't know I had Lyme at that time. Finally I just couldn't do it anymore.
I spent the next 2 years trying to figure out what the heck was wrong with me. Fortunately my husband has a good job.
I would like to go back to work when I feel well; but I wonder if my brain will ever be normal again and I still have so much fatigue.
I give tons of credit to all of you who have continued to work!!!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I worked the whole way through my lyme treatment!
I remember hardly being able to get up the stairs of my office at one point my knees hurt so bad and my legs were so weak! I have a 1 hour 45 min. commute each way (INSANE!)... and I remember actually getting confused on the drive home quite a few times!
For 2 years, I could only sleep at most 3 hours a night and many nights I went without any sleep the insomnia was so bad. I dont really know how I was able to function to work when I think back on it.
With that being said, after treating with abx. for 17 months and also using rife and infrared light therapy, along with some herbs and exercise, I am doing very well- 95% and have been off all abx. now for 6 months- yay!
For me, I think working helped keep me sane, otherwise knowing me I would have been on lymenet all day, every day! I think I would have gotten a lot more depressed than I was. I needed work to keep my life somewhat normal...
and now... life is really good! you will get there, it just takes a long, long time...
Posts: 871 | From NJ | Registered: Mar 2007
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posted
I to am working while on lyme tx, but between all of us i wish i didnt have to. We just bought a home and one income would be difficult.. I know we could do it , but i dont even what to deal with that stress.. i wish i could just sit and sleep... but i cant so i make the best of it
posted
Thankfully, I got approval to go part time around when I began treatment. I'd been using up sick/vacation time very quickly.
I would prefer not to work at all during this, and I don't feel very productive. I am very self-conscience about how lazy and disinterested I must appear to others.
I'm just trying to get through this. I do think that working does help my mentality in some ways, but it is overall very difficult!
I try to focus on how in the long run, I'm lucky I got into treatment when I did and hope that as much as this is a struggle, it will be worth it once I get my health back.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i taught phys ed in an inner city school on 3 yrs high dose orals
then another 5 yrs on herbs
i called in sick a lot and got in late a lot and there was one month when i couldn't get out of bed
figuring out the probiotics and anti fungals so you don't have to live in the bathroom was the most impt for me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I am back to my old self 70% and working most of the time. Still tired but I think work helps me keep my mind off myself (not to mention paying the bills).
Take heart. I couldn't work for a while when I was herxing really badly. You can feel better but it takes time and lots of patience. Work with your doctor and don't be so hard on yourself.
I'm with a new LLMD, have been on orals about 9 months and probably have that much more to go.
Slow or no progress is better than going backwards. Thinking about what I can still do (rather than what I can't) helps me a lot. Keep the faith!
-------------------- But the greatest of these is LOVE Posts: 19 | From New England | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Just my opinion..... I quit my job after 5 months of being ill but not knowing what was wrong with me. I quit when it came to the point that there was no decision to be made. I literally could not work another day.
I would work for as long as your body would allow it. I would push myself until I came to a point that I couldn't push any further. I say this because I know people that have quit and I know people that have worked through it all, and it looks like everyone ends up in the same boat.
Those that quit are no further along in feeling better than those that push through and keep working. Those that are able to continue working are much better off mentally.
If the day comes, and you will know when that is, that you just cannot work another day; then it is time to quit. This is just my opinion. Only you know what you are capable of doing.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
This is a really difficult call and everyone's disease and progess are different. I think it can be helpful to have work to go to keep your mind off your disease and to also provide the necessary funds for treatment.
However, if you are draining all of your energy and not letting your body heal you also prolong the treatment. My husband was able to get long term disability and was in and out of work over two years.
After two years of treatment, he's able to put in a full work week at a desk job. However, he does work from home on Wednesdays to give himself some needed rest.
So, look into disability or if that's not available look into part-time or working from home.
Posts: 984 | From San Diego | Registered: Nov 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i remember when it came time to pulse i would take meds on fri, sat and sun and stay off the rest of the week. mon was hard but i got thru it...i did that the second year
3rd year was really detox and getting rid of yeast
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I've been working all the way through as well. It's pure hell but I feel it's necessary to hold onto insurance and to stay positive (if that's possible).
Since chronic fatigue is a central issue for me, it's been exceptionally hard but I'm getting it done somehow. If I hit lotto, then I'll retire early
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I haven't. It would impede my treatment big time and make life not worth living.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Your post and all the replies has broken my heart. I had to get out of bed to post myself.
I contracted Lyme 28 years ago when I was a college student - my whole life ahead of me.
Instead I have had 28 years of terrible pain, unnecessary treatments, including two back and neck surgeries. I have traveled across the country and pursued every avenue to find relief, totally unsucessfully.
I squeaked thru college, but have never been able to work for more than a couple of hours a day.
For the last 20 years I have operated a part-time bookkeeping business from my home. I have been forturnate that my brain fog allowed me to do this, I know many could not.
My desk is a standing height with a drafting chair, so I can sit or stand. I have a day bed in the room for breaks. Overall, I'm lucky to have had the skill to make this work, but it came at a very hard price - more pain.
I was finally diagnosed a year ago, because my teen daughter, with health problems of her own, became gravely ill. We discovered that she had contracted Lyme from me at birth.
In the past year I have given up my business to care full-time for my bedridden daughter. Luckily, my husband is supportive. We just refinanced the house to get the money for a couple more years of treatment. Our first year of treatment has not yielded much positively for either of us.
When I first learned why my life had taken this turn I felt so grateful - a huge mystery solved.
A year later, after reading so many posts and wondering if my daughter will make it thru the night, I am no longer grateful. What a hard, hard journey we all have ahead of us.
Long rambling, bottom line for me - don't work unless you have to. For me, giving up sitting at a desk for 2 or 3 hours a day has been a good thing, even tho it has been replaced by caregiving.
I know things will eventually get better for all of us, but the journey is so very hard.
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I was only out of work 5 mths. I was incredibly sick with inflammation and pain.
What worked for me was diet and detox and supplementation.
Much of our symptoms come from inflammation caused by toxins. Toxins from bugs, drugs, diet and environment.
It is impossible to be toxin free, but important to be as free as reasonably possible. Avoid processed foods and sweets. Eat nutritiously.
Drink lots of water and eat cruciferous vegetables which are detoxifying.
Supplements like magnesium, CoQ10, really help you fight disease, but it is important to let a good, qualified integrative doctor assess where you are deficient and let them determine which supplements to take.
1-If your doctor prescribes the supplement, you can deduct it on your taxes. 2-Your doctor will know the best brands. Get pharmacutical grade products and leave the cheap drugstore variety alone. 3-Your doctor, if trained to do so, can determine what you need, how much and when.
I was so toxic, it has been necessary for me to receive IVs of glutathione to aid my body in detoxifying. Today, I am able to use glutathione suppositories for the same purpose.
My doctor also has me on several detoxing herbal combinations to keep the toxins moving. When I was first ill, I could not even sweat. That is how disfunctional my body had become.
I also have a job that is more mental than physical but initially, I could not do the mental work. Following the formula outlined above got me back up and running.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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