posted
Hi all, So much crap running through my head right now and I feel so useless to everyone I love. Nothing I post here will be new news to anyone here I'm sure and I'm so ashamed with myself for not being stronger.
I'm only into my third month of treatment and I feel like I let loose the beast in my system. I'm usually the type that gets by in life by facing my problems head-on and then move on.
I love to help people and make people laugh. My funny bone has been attacked by Lyme. I'm so messed up neuro wise that I can't even make sence of my own thoughts.
I get on here to vent and usually I read other posts first, then I feel like I'm just adding to the negative and not the positive. I was trying to help with a family geneology project yesterday and found myself sitting with my fingers hovering over the keyboard, not being able to remember where the letters were.
Then while trying to organize birthdays into each month I seriously could not remember what order the months go in. Usually this stuff is funny to me but now now.
Then the physical issues, bladder control, muscle fitgue, cramps, twitches, and spasms. My 2 yr. old grand daughter fell asleep and I had to carry her upstairs to bed. I nearly collapsed at the top of the stairs, my legs were burning and shaking really bad.
How can I be a reliable caregiver with all this going on? I have lots of moments now of thinking of just giving up treatment. I feel like I've unleashed those ba^%#ard bugs. They came out of hiding and now are reaking total havoc on my body and mind.
I take Zoloft for the anxeity (prescribed pre-diagnosis of Lyme), soak in the tub with mineral salts and baking soda, drink tons of water, etc. to help with issues.
I can't really complain much around my daughter as she is battling Lyme as well and feels absolutely myserable too.
Like I said earlier, none of this is new to anyone here and I apologize for being such a downer and a whimp. I guess I just needed to type and vent.
proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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I was feeling exactly like you during that period of my treatment. It is extremely overwhelming and depressing to have your spirit taken away from you.
Not only your spirit but your memory. Your body is going through such a battle right now. One that it has never experienced before.
Your words were mine and still at times are mine. I use to pretend I remembered something that happened from the past because I would rack my brain trying to remember it.
Now, I just flat out tell them I have no idea what you are talking about and basically we laugh at it.
It is not me to be this completely blank upstairs! I had such a crisp memory for detail. Now I am lucky if I can remember what I just wrote in the beginning of this post....(seriously I am sitting here thinking and I can't!)lol
I can see today is going to be one of those days!
So this is what I have come to realizing,we as lymies are way to hard on ourselves. We expect so much from our bodies and minds while going through treatment.
If we had lyme for years we pushed beyond belief to be "normal" and live a "normal" life. Always knowing that something was wrong and we were sick but not able to get the medical help and diagnose we needed.
I would tell my Dr's that I still have lyme disease and that I got it at the age of 10 and of course I would have that look of you are crazy and no you don't.
Think about it, we are strong and smart and we have such a deep understanding towards our bodies and now we have someplace to go and talk to others like us.
It's very hard to mourn who you once were. We all go through it. But, little by little you will see yourself coming back and when you do it is such a wonderful gift!
It is the simple things in life that we appreciate. Mostly, feeling alive!
I hope you feel better today.
Posts: 101 | From NJ | Registered: Apr 2008
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posted
Dont know what to say really - so will send you big hugs.
Posts: 234 | From BC Canada | Registered: Aug 2008
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toby67
Unregistered
posted
when my dad was in his last year of life, my brother never visited him because he told us "ya gotta admit, dad's pretty useless..."
My kids complained sometimes that they didn't want to go, but i insisted that it's not about you, its for Pa. They would climb in his lap and sit on his bed. They read to him, and they smiled when he mumbled and hugged them and pretended to read them stories as well..
I always thought he was so happy to see them and that he was obviously getting more out of the visits than they were.
well, yesterday, my daughter's teacher told me my 8 year old daughter is the kindest, most that compassionate and most helpful student she's ever had...
she asked her, where did you learn to be so kind?
She said my daughter told her "i learned it from my pa. I helped him die."
Please don't ever feel useless. You are touching lives every day whether you feel like it our not - You call it whining, but to someone else, you've shared a feeling or a moment that's made a connection with them... That's priceless.
I wish there was a word or two to comfort you right now in your pain. Believe me, i missed two of the most beautiful fall days this week wrapped in a ball crying in bed. I don't know which was worse, the pain and sadness in my heart, or the screaming bone pain radiating thoughout my body. I would have amutated my legs if i'd had the means.
I've found that the best thing is to be honest with my kids and tell them, "hey today's a tough one for me, but bring your books in here, or whatever.." And they sit with me and play video games on my bedroom TV and I doze in and out.
But this morning i went to my son's football game... And tomorrow we will all be together in church.
so cliche, but we can't beat ourselves up... Its just a new normal, with new limitations.
You sound like an incredibly loving person, even with the Lyme! As long as you have love to give and kindness to share, or stories to tell, you are teaching your grandchildren invaluable lessons, and that's certainly not useless!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there, <<<<< Proudmom >>>>>,
I am venting here today too, I think perhaps it is part of the phases from this LD and co.
It isn't easy to be an ill caregiver honey! you are not a fool,either!!! You are worn and weary,and wondering if it'll get better!!!
Same here, don't give up Sister in suffering!!! We will make it... not sure when...but I am beleiveing we're gonna get thru all this!!!
Love from Silverwolf
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Proudmom "I feel like I've unleashed those ba^%#ard bugs"
You gotta love it - give those bugs Hell!!!! -p
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
OT AND TOBY,
both of your posts were so touching especially about helping pa die! wow...monumental comment from a young 8 yr. old.
proud mom, rant all you want; you deserve to!! you always come on here cheerful and help folks over and over so it's YOUR turn to get the "mushy" treatment!
your son-in-law is also in war, and that makes everything else worse on top of lyme for you and your precious daughter.
it's a compilation of everything hitting you at this time.
i've NEVER met a kinder woman like you ... ok; guess i have met some other wonderful folks like you on this board.
don't apologize for getting this out of your system !! you do what YOU gotta do!
sending you/yours my prayers, thoughts, and
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hang in there. It's okay to vent here. People who can listen do listen. There are enough of us here to care about each other in a community.
You should be proud - of yourself.
I know what you are saying. Been there on all accounts. It does get better. I wouldn't choose this lyme experience for all the tea, but at least you do come out wiser and more compassionate when it is over. Thinking kind thoughts of you.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I can't concetrate long enough to respond to each of you individualy. You all are so wise and wonderful. Had my dr. appt today and he added MSM to my supplements list for the nerve and muscle issues. but as far as my brain issues, only time will tell.
Again thank you everyone, Proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
proudmom,
thanks for reporting in with drs. update on yourself! hang in there; we're hanging around with you ... NO place to go to!
and it's even TGIF.... thank god it's friday!!
sorry, just remembered dancing w/stars was on tonight.
posted
Yea, I know, quitting abx was just a passing thought. I'm committed to see this through and I'm not a quitter. Just my body and mind having a debate with eachother.
Somedays I just want to shout "Shut the @#$% up!" LOL however I'd end up in the funny farm for sure.
I have tried anti-depresents in the past before dx and wow was that wrong for me. I had nightmares and couldn't sleep. After trying several types I gave up the idea.
I am still taking Zoloft for my "panic" attacks and I do have some left over xanax as a backup but I don't need to add "dopey" to my list of aggrevations.
Hugs back to everyone and a great big thank you for being here.
Proudmom
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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