Topic: anything left to do, or, how to make peace with giving up?
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Nine years into this disease, with co's, and never enough progress on abx to have any reason for optimism.
Two plus years of no abx with no realistic avenue open for treatment. Every symptom present and worsening.
OK, have long since accepted that improvement won't happen. For those who have been here, how to plan for dealing with what is left? How do you move on from this place, or is that even possible?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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i dont know how to make peace with this intolerable suffering. i realy hope you find a way to improve. just know that someone here knows exactly how you feel
i wish i could do more to comfort you. i hate that someone else is hurting like this. may god watch over you. love,jess
Posts: 651 | From ct | Registered: Sep 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I have been treating for 17 months and I just hit a brick wall as well. But no I won't accept defeat... when I do then I might as well just keel over and die!
I have a wonderful, loving husband that wants his wife back. I have kids that want their mother back. I have friends that are waiting for me to join them. So I have no choice but to keep on fighting!
We're researching about going to Germany to try photon treatment. We will not leave any stone unturned. This is no longer just about me but my daughter's life is at stake here. So we'll do whatever it takes to get us well!
So don't give up! Find a way to keep on keeping on!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
I think it's still about experimenting with treatments to see what's going to make a difference. We just never know until we try something.
Dilly, I know you give a lot first to your child, and I wonder whether you get enough treatment options.
Posts: 13116 | From San Francisco | Registered: May 2006
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the reason why you can't figure out about how to give up is because you can't give up.
you know i know what it feels like. and the collateral damage.
i wish i could tell you how right this moment to feel better but it doesn't matter how.. i just know it's NO to giving up.
i went to look for charlie as soon as i read this, because i know he'd be right here.
for now, i found a post i'll copy, as well as one where he suggests to a member who posted on rebounding for lymph -- charlie sez if rebounding moves lymph then a pogo stick ought to be even better...... .
here's another, with maddog:
Author Topic: Missing galon of milk. MADDOG Frequent Contributor (1K+ posts) Member # 18
posted 22 June, 2009 11:48 PM -------------------------------------------------------------------------------- Hi Gang,I went to the grocery an got a gallon of milk and some other stuff.
I came home and when I opened the truck door a dozen eggs fell out and some broke.
While saving the eggs and carrying everything else in I lost the milk.
I thought I had left it at the store as I have done that a lot.
Three days later I went to wash some clothes and there in the washing machine was the milk ,quite rotten it was.
MADDOG -------------------------------------------------------------------------------- Posts: 2746 | From Ohio | Registered: Oct 2000 | IP: Logged |
charlie Frequent Contributor (1K+ posts) Member # 25 posted 23 June, 2009 12:22 AM -------------------------------------------------------------------------------- ...at least it was clean.... -------------------------------------------------------------------------------- Posts: 2804 | From Texas | Registered: Oct 2000
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no giving up -- he would kick your butt. Posts: 8337 | From the other shore | Registered: Jul 2002
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
(((Mo-
Thanks for the good laugh from reading Maddog's post, and sweet Charlie's reply.
I know you know. I forget a lot and more often than not, but I've thought of you and have been hoping for you and yours, just BTW.
I've wished countless times for Charlie to still be here, not least because he was always number 1, hands down the best for knowing how to keep on going, with laughter no less. )))
C and S-girl-- I wish you both the absolute best, and that you are able to hold on to every hope. You are both relatively early in treatment, even if it does not feel that way to you.
S-girl- knowing that you are fighting for others as well as yourself does make a difference in how you see the battle- hold tight to that thought!!!!
Robin- yes, I put my son's treatment before my own for years. And, no regrets....that focus was were it needed to be, and has paid off- we think he is genuinely well now, though we have still have residual damage of various kinds to deal with.
It's possible that I put aside my own tx for too long, and that when circumstances allowed me to pick it back up I had forgotten where I had put the thing, or even, many days, that there is a thing to pick back up.
I really am not feeling sorry for myself, or hopeless, or even in need of cheering up, though I always welcome being offered a chance to laugh.
I just realize that I had access to the best available docs and tx for many years, and even when I had all that, my improvement was very slight and very temporary.
I' just reached a point a fairly long while ago where I realized-- this might be as good as it will ever be again. I forget that realization as well, then it resurfaces when I've done something really forgetful or stupid, like tonight.
It is a real question, for those who have been there and back, and then there and back too many times to count.
What if this is all there is left, then how to cope with that reality well enough to have something left of a life?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I am reading a really insightful book called" How To Be Sick". It is written with a Buddhist point of view. I am not Buddhist, nor have I ever read any books like this. The messages in the book have helped me move from anger and resentment into contentment. Not just acceptance, but actually finding my place with this illness.
It is about finding satisfaction. Our suffering is not from the illness itself, but from our perception of what the illness does to us. When I am too sick to leave bed, my mind races, telling me that it sucks to be stuck in bed. I get angry at my body. I get jealous of my friends and family who are not sick.
I am learning to forgive my body. It is doing the best job it can. I am practicing being happy for my friends who are healthy when they get to go do fun things. In time, with practice, I will feel genuine joy for the people around me. I am learning to be compassionate to myself. It is a process. The author of this book has allowed me to shift my thinking when it comes to my illness, and all the life I have lost as a result.
I have not yet finished the book, but it is a must read for anyone living with a chronic illness.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Searching-
I will definitely read this book...THANK YOU!!!!
I skimmed over a few reviews of the book you mention, and it sounds like it might have some of the very insights I have been seeking.
Thanks again.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
OMGosh! Someone else recommended this book to me, but I forgot all about it.
posted
Well, Dilly, it's a good question - how do we live with the symptoms we have?
It's a modified life, that's for sure! Everything has to adjust. I try to grab what I can, when I can. For us, it's our normal. To the world, we can look a bit weird!
Hm - a chance to laugh, you say? That can help - like when I was lying down all the time, and people would ask why, I didn't really want to have to discuss fibromyalgia with everyone, so I hit upon the idea of saying because I was writing a book on ceilings!
Then the other person would look up and we'd start to discuss the ceiling!! Which definitely took my mind off of fibro! I even had my favorite ceilings in town I'd start chatting about!
Posts: 13116 | From San Francisco | Registered: May 2006
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Thanks much for the recommendation. Sounds like something we could all use to read!
Dilly, hang in there. It is truly a journey. Sometimes it gets to the point in which you describe where it feels like such a losing battle that we seemingly have no where left to turn. Also known as "rock bottom".
Flower remedies can be very, very helpful in shifting us out of the rock bottom feelings of futility, and back into a more hopeful, content place. When all else fails, I turn to them when either my symptoms or herxing is just over the top, as well as for depression, anger, and all the other fun feelings that come up with this process we all find ourselves in.
Whether we like it or not, we are in it. The key, IMO, is figuring out how to make it work for us. Coming to an acceptance is not an easy task, but when we can just kind of come to a place of non resistance and realize that there are still tools we can use and learn ways around some of the most difficult aspects of this illness, we start to find some hope and easement.
For each one of us, the tools often differ. A book, a certain combo of supplements or herbs, perhaps something as simple as a daily ritual that you instill. For me it is getting up in the morning, making a cup of coffee, putting on some beautiful music, and getting out my paints for an hour makes all the difference in the world.
Setting realistic limits, expectations can also be key. Something even as mundane as getting all the laundry done can be rewarding in and of itself! Find the rewards in the things you can do. And also remember to reward yourself, too! A nice pair of shoes works wonders for me! www.zappos.com is a real treat, especially if you are housebound!
Best to you Robbie
Posts: 192 | From New England | Registered: May 2011
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Kudzuslipper
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Member # 31915
posted
Just want to give you a hug dilly!!! I am new to this, just 5 months, but wonder if I did better just thinking it was Fibromyalgia...I accepted that, and didn't expect it to get better.
When I was dx with Lyme and started abx...I had fantasies of feeling better than I have for 18 years. I have had good days...and days that I thought I was going to die, so much worse than any other time before because I think when the bad days come after a few good, you get very disappointed.
Searching, that book sounds like a nice change from protocol books. I am going to get it. thanks.
Dilly, I wish I had more advice to give...so please accept a big healing hug instead.
Posts: 1728 | From USA | Registered: May 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dilly,
Oh PLEASE don't think there is not another option! Have you considered treating for parasites? Antiparasitics and salt/c saved my life and turned the corner for me.
What say you dilly girl? \
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
dilly, i want to say that i didn't mean not to give up on treating lyme.. treat it or not, was not my point.
i meant don't give up on feeling better.
i love the posts here.
Posts: 8337 | From the other shore | Registered: Jul 2002
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I'm with gael. I have been trying all kinds of parasite treatments and it is helping...And most are not made for humans...
I wish we had something like them I could soak in to kill the buggers coming out...Cos' that's half the problem...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Robin123, I love your minds thinking process. Its a modified life is an understatement!
To say this is our "normal" is not what I hope it to be. To say your writing a book about ceilings is awesome. Do you mind if I borrow that line?
I hate it too Dilly and I am the newbie round here! I am content just knowing that its NOT "just in my head" as the dr.'s would tell me. Seems to be enough for me just to have an answer as to why I feel so lousy.
-------------------- A little lymie... Posts: 104 | From Greener Pastures in PA | Registered: Sep 2011
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posted
Haha, JAC - thx! Sure - let us know what kind of ceiling conversations you get into! It would be even funnier if we actually did have a Ceilings I Have Known And Loved pamphlet to hand out.
What I do often just erupts out of the tediousness of it all, and it makes me laugh -
Here's another one - I lie down on the train, because my joints can't handle the bouncing, and people will ask me what I'm doing there, as if lying down isn't enough.
So I say, well, actually, I'm going to levitate in about - then I name a time later than when I'm disembarking -- so, stick around!
Believe it or not, some people have been amazed - you can levitate?! I've been asked. Sure - you just have to concentrate really hard on achieving belief in one's weightlessness. I love it.
Posts: 13116 | From San Francisco | Registered: May 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
New information surfaced: Dr. Fry released some data recently on a new infection that may be the bane of our existence.
PROTOMYXZOA Rheumatic
It's a parasite, like Babesia and Malaria. It creates biofilms though. Investigate via Fry if you have questions. I stumbled across this news Yesterday.
-------------------- 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.
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I am with you .. I don't think its giving up but accepting ..Have No answer but sure can relate to what you are saying as I am in the same boat.
I am now looking for a purpose in my life with my limitations. Not the life I want but the one I must accept and deal with. Oh, to find happiness once again.
I know I have been MIA for some time - have gotten lost in the world of single motherhood plus Lyme plus running my own business and there is nothing left in me at the end of the day. But somebody told me you were despairing and that I needed to contact you, and so I tried calling you but, alas, in my new phone, I lost all of my old phone numbers and can't call! But I am thinking of you..
Maybe you can come my way and use my coil machine? Or maybe I can work some wonderful acu-magic.... or maybe I can just make you laugh! (While you change my toddler's diapers of course)... I am here if you want to call, or you can email me your phone number, but know you have all of my support even if I don't have the answers for you. I will just come up with idea after idea to keep you from crashing further but that might drive you nuts. But, maybe just knowing how many people love you, even if they seem to be MIA, should help. I am here any time you need to get away, and I would love to talk.
All my love, luvdogs
Posts: 588 | From Rhode Island | Registered: Jun 2006
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posted
Well, before giving it up, you might give Medsonix a try. It has been an amazing help to us. You can google it - Medsonix.com. Good Luck!
Posts: 43 | From The South | Registered: Jan 2010
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Sure - let us know what kind of ceiling conversations you get into! It would be even funnier if we actually did have a Ceilings I Have Known And Loved pamphlet to hand out.
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