posted
I have had lyme disease for about 8 years now, I've been in treatment for 4. I have come a long way, but I still go through rough patches, as I am having now with my immune system. I was working part-time with a little boy who has autism, but I just recently had to give it up for a while because I did not have the stamina. I really struggle with a lot a guilt over not being able to work right now. Does anyone else ever feel like a bad person because you cannot do the things you think you are supposed to? I have been thinking about a way to work at home, has anyone out there had any good luck with this or finding any good opportunities in that area?
Posts: 8 | From NY | Registered: Mar 2006
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bettyg
Unregistered
posted
Welcome Lily! I'm breaking this up for us neuro lymies who can't read long continuous paragraphs...
quote:Originally posted by lilysue:
I have had lyme disease for about 8 years now, I've been in treatment for 4.
I have come a long way, but I still go through rough patches, as I am having now with my immune system.
I was working part-time with a little boy who has autism, but I just recently had to give it up for a while because I did not have the stamina.
I really struggle with a lot a guilt over not being able to work right now.
Does anyone else ever feel like a bad person because you cannot do the things you think you are supposed to?
I have been thinking about a way to work at home, has anyone out there had any good luck with this or finding any good opportunities in that area?
Lily, you should not feel guilty since you are no longer able to work due to your lyme and treatments gotten. You have to take of YOU right now; not others.
Although I'm sure you need the extra money too.
Several folks work from home doing computer type work.
I'll include some newbie stuff; check TREEPATROL'S NEWBIE LINKS in case he has something there about guilt for not working. I can't remember off the top of my head...neuro brain fog/memory problems. Glad you joined us!
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
posted
Hi lilysue! Welcome to Lymenet! We're glad you stopped by!
I understand the feeling of uselessness very well! I was forced into early retirement 12 years ago due to my various illnesses, which turned out to be Lyme disease.
I'm doing VERY well now, all thanks to my LLMD!
I do work from my home, but I'm not allowed to discuss it here because of Lymenet rules.
I hope you have a good LLMD and that you are progressing. Let us know if we can help with that or anything else, OK?!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Lilysue,
Yes, it is frustrating to not be able to work when you really want to contribute. I am sorry to hear that your treatment is taking so long. Good to hear you are getting better.
I am a special ed teacher of children with autism. I am not working right now as my kids and I are sick...
I love working with special needs kids. But in my experience, it is one of the most physically and emotionally draining roles to take on.
Perhaps as you are up to it, you can find a part-time job that is less taxing. Just a thought.
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hi lilysue,
welcome to the board!!
i feel very fortunate to be able to work while recovering from lyme. i had made a transition before the lyme to a less stressful, more predictable job, so over time all has worked out. i work 5 minutes from home. it is rarely physical work.
in the past i have not been able to work, so i KNOW how hard that is - emotionally and financially.
hope you get your needs met on the board here.
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have been disabled since 2000.
A good portion of the time I couldnt even take care of myself much less try to do anything for the people that take care of me.
I was in school to be an art teacher when I became disabled...lyme symptoms since 1987
I cant imagine taking care of an autistic child while trying to recover from the difficulties of this disease...
My cousin is autistic so I do know what autism is like.
You should realize that you are a very strong person for doing the things that you still can do...
I think that is roughest when I first couldnt work because it was a huge devastation to my identity ...
I was always career oriented and what not ... and losing the ability to pursue my carreer...
I just had to realize ... this does not make me less of a person ...
or even less me... I m still the same me I have always been.
And my advice is hold hope tight....
You have to know and believe that you will get better and be able to work again.
posted
I struggle with guilt too. It's not justifiable guilt because I didn't ask for lyme disease, nor did I ask to be misdiagnosed for so many years. I feel guilty because I'm not the Mom I could be if I weren't so sick. Guilty again for being disabled and not being able to contribute much to our finances. Sound familiar?
You didn't ask for any of this either, but the world sometimes treats us as if we did. Try to give yourself a break from the guilt trip. You aren't guilty of anything but trying to be healthy.
I have been able to contribute financially, but unpredictably so. Send me a PM for more info if you like.
In the meantime, stop beating yourself up!
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I went on short term disability a month ago after battling to get to work every day.
I don't like being stuck at home and I am very concerned about $ matters. I don't want to lose my home, but at this time I must spend 100% of my energy in getting better.
I think my recovery has been slowed by the fact that I continued to work when I should have been resting.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I left a high paying job I loved doing last year because of Lyme. It's been a year now that I have been on disability. I couldn't help it. I was way too sick and in too much pain to work anymore. Thank god my doctor mandated rest and no work.
Except he told me "four months and you will be back in the saddle". Ha ha. I think it will be more like four years.
I have felt very guilty because I am the breadwinner of our family. My girls are adolescents. They don't need to see their dad in bed all day, and unable to attend many of their functions.
I have felt like I let everyone down. My wife is incredibly stressed because she has two of us Lymies at home.
My strategies for dealing with guilt: 1. Don't let it in. 2. If it does get in, forgive myself and don't feed the guilt. 3. Talked it over with my family. 4. Turn to gratitude as an antidote to the negative emotions of guilt.
For me, I understand totally anyone who feels guilt and fear.
When I feel them, I do a meditation practice wherein you send yourself, as a sick person, lovingkindness. Eventually you extend lovingkindness to all people who have Lyme, all who are so catastrophically sick and in pain, and all people who face physical pain and illness as part of being a human being.
We are probably going to lose our house because of money. I don't focus on the potential loss.
I try to focus on acceptance of the way things are. I actively try to pull out the things that are good. Like right now I can lay in bed, not have to worry about getting up and going to work (lots of stress just getting going in the day for me -- and stress is NOT GOOD for Lyme. I can listen to the radio and join in on this support group.
So I have to be very active, or the pain, the disease itself, and all these understandable feelings could send me into a depression.
I feel guilty sometimes for the most irrational things! Like taking morphine, which I take minimally, but still ... I never thought of myself as someone who would need this just to function.
Then I say to myself, Okay, just accept it all for now as part of the package of being devastatingly ill. It's okay. It's important to stay as comfortable as possible while going through these herx.
So I have to acively give myself permission to take all these medications and say, it's okay, it is what is needed right now.
I am glad you raised this issue because I can relate.
Hang in there. Like someone said the other day, this is a marathon. There will be an end, it's not in sight right now, and so we have to be patient and pace ourselves.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Thankyou everyone for sharing with me and giving me such a warm welcome to this site!
It is so nice to be able to talk to other people who know exactly how you feel.
Thankyou also for your encouraging words!!
I am greatly frustrtated by the fact that I cannot work, but I know that I am also blessed in so many ways.
I just got married about 5 months ago, that in itself is a gift. A few years ago I didn't know if that would even be in my future.
My husband is a very sweet guy and not concerned at all that I can't work right now. I have a strong family of parents and older brothers who also believe that my primary goal right now is to just get better. My mom says that getting better is my full-time job.
So, I guess I need to take on their attitude and let go of the guilt. In a lot of ways I think I am a better, stronger and more compassionate person for going through all of this. So, I know that God will help to bring good out of this, even if it is not in ways that I would expect.
Ok, so I think I am just a little more postive than I was in my first post. Posts: 8 | From NY | Registered: Mar 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hi Lily, my son is on an immune building regimen right now. He's been off of abx for several months.
Vit. C [maximum tolerable level} Vit. E B Complex Pantothenic acid Omega 3 Chinese ginseng magnesium
Good luck and welcome !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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