posted
I've had a pretty good attitude about my Lyme since I got sick at 23 years old. There have been times that I've cursed the world (as we all have) but for the most part I've taken it in stride, done what I needed to do and kept trying to live my life.
But until the past year or so, when necessary I was allowed the luxury of just being sick. When I had pushed myself too hard and was at collapse point I was able to take a weekend and do nothing but try to recoup some of that energy. I was usually able to get 8-9 hours of sleep a night so that I wouldn't hit that point of collapse.
I know I'm not alone in this, but now I'm a divorced single mother with no time to be sick! I'm sleeping 5 hours a night. I'm pushing non-stop and I never have that downtime anymore. Lately, I constantly feel on the edge of a collapse but I keep pushing because I don't have time to succumb to the fatigue and the pain.
I'm tired, I hurt, I'm scared and I have no one in my life who understands.
Posts: 415 | From Canton, GA United States | Registered: May 2004
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
slcd,
I'm so, so sorry about this.
I can't imagine not having time for myself, not having time to be sick, having to work and take care of everything all the time.
And I can't imagine not having anyone who understands.
I'm so sorry you have to go thru this.
I wish there was some tangible way I could help.
Do you have a church community with an outreach that would help you, at least with some babysitting once in a while?
Hugs to you and lots of prayers.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Thank you guys! I'm sorry for being whiny, I just figured this is the only place anyone would understand what I'm feeling. My friends and families are very much of the "but you don't look sick!" mindset...lol
I'm not a member of a church down here. I just haven't found anything since moving south...
Since I stopped seeing Dr. J in Charlotte a few years ago I haven't had ANY luck finding a good LLMD. I saw a doctor in GA for awhile who was supposedly "Lyme Friendly", but he basically called me a drug seeker when I asked if I should try antibiotics again (and no, I had NEVER even asked him for pain pills or anything. This was when I was still trying to convince myself that I could do without them...) I now have a wonderful Pain Management doctor, though, who tries to help me with all of the symptoms at least. He doesn't really believe in Chronic Lyme as far as infection goes so he doesn't do any antibiotic treatment or anything, but he does see what he calls the "lingering symptoms" and helps me with those.
Honestly, even if I found a good LLMD at this point, I'm not sure if I could afford it on my new "single mom budget". lol
Posts: 415 | From Canton, GA United States | Registered: May 2004
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Have you looked into Buhner herb protocol? He is a master herbalist.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
PS. whining is allowed. i do it all the time
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Whining is allowed. ..... but you NEED to find time to SLEEP!! You CAN't consider it a luxury!
You might be able to take some herbs for infection. If you're as functional as you sound, herbs may be the best thing for you anyway. Try Buhner's book, "Healing Lyme."
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
slcd,
I would try the herbs that the others are talking about it I were in your shoes.
Also, whatever you have to do to get sleep, do it!! Even if your kids have to go to bed earlier. If they are not sleepy, let them read or something so that you can get your rest.
I'm so sorry that you are having to go this alone. It STINKS!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
1. the tea is cheapand is making me better than abx did-directions for it are in this months "public health alert"
-some parts are ttricky but pm me and i will talk you thru it
2. i am 61-my kids are now 43, 38, 27, and 26
we all had/have lyme. i had it from the 70s to the present but it is much better controlled now
i went thru different phases
12 yrs of no dx (even tho i knew it was lyme) but docs would only dx RA (testing was not pos) and fibro
then a month in bed in severe neuro pain-still no dx or tx-toddlers had to bend over bed to kiss my cheek without making the bed move cuz it would hurt me so bad
i raised the 4 kids and worked as a PE teacher commuted over and hr each way and there were many time i had 1-6 horses in the barn
for part of it husband helped-for a lot of it i was single mom
if you search my name(lpkayak) i recently wrote a long post about my kids and their lyme
i don't know how i did it-i did learn to prioritize and make lists---really tried to get the thing that was the most important for each kid to them at the right time
once they were all gone to college i was able to focus on my needs more and now i am doing really good.
all i can say is don't give up. be as aggressive as you can about your tx and any tx the kids might need
i can't believe what i went thru and how i survived but all the kids are doing well-i'm better than i have been in many, many years...most of my life really
i think it must be true we are not given something to do that we can't handle
praying helps.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks guys! I'll definitely look into the herbs!
As for sleep...my daughter is 4...and has ADHD...I put her to bed at 8 but she usually doesn't fall asleep until 10 or 11 because she can't settle down and then I have to get up between 4:30 and 5 to get her ready for school and me ready for work and get out the door. And call me a crazy paranoid mom, but I don't feel comfortable going to sleep before her because I never know what she'll get into! lol Her dad works weekends so the 1-2 days a week that he takes her are usually during the week so they still don't give me an opportunity to really sleep in and catch up. I'm hopeful that things will get better in the next few years, but until then I'm just so tired! lol
Lpkayak - I'm going to send you a pm now about the tea. Thanks!
Posts: 415 | From Canton, GA United States | Registered: May 2004
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posted
I didn't have Lyme at the time, but I had another illness when I was juggling work, school, 3 teenage kids and an abusive hubby. Never got more than 5 hours of sleep a night, and usually interrupted in the middle of that.
It was killing me. My health continued declining for years. Even after I got divorced and the kids grew up, it took me several more years to get my health back.
I was just on the verge of being truly healthy, when I got Lyme. Doh!
So you have my sympathy, and I don't have any practical advice for you.
There is one thing, though. When we are wives and mothers, we tend to give all of ourselves for other people, and take the leftovers for ourselves. I remember reading an essay that was something about mother always eating the burned toast. My mom used to do that--if she burned one piece of toast, she would give the kids the good toast.
This was great when I was a kid. I got good toast, and I knew my mom loved me.
However, when I grew up, then I ended up eating the burned toast and didn't know how to make space to take care of myself. I wasn't sure I was supposed to. So I just suffered.
When your daughter is older, it will be good for her to have learned that she has a right and obligation to take care of herself even when everyone else makes demands of her. Naturally there are practical limits with a 4-year-old, but it won't be bad for her if she sees you taking time for yourself when you get a chance, if you're able to find a way to do it.
Hang in there--nothing is permanent.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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