posted
You know to visit that little river we all know. De Nlle. I try not to research too much, or think too much about having this disease.
I try to pretend like everythings fine. Like maybe if I do that, it will just go away.
Not like my body lets me get away with it. It just all feels so overwhelming. I sometimes feel like I'm going crazy.
Each day you don't know what is comming at you next. Your tired, your in pain, you can't sleep and your a nervous wreck half the time despite the herbs and drugs.
Ofcourse there is always the unexpected. Your body jerking, eye ball twitching, ect, ect.
You wonder if it will ever end. Then there are the horrible times when you let your mind wander to that dark place. Wondering if it is going to be the end of you.
How do we deal with it, ourselves. When it doesn't just effect us alone. We have partners, children, and other family members. We worry how it is effecting them. Then their is the burden of that guilt.
The guilt of not being able to do all that we use to do. Not being able to be fully there for them as we used to.
Ofcourse we find out who our real friends & family are. As they dissapear into the wood work, because nobody wants to be around someone who is sick all the time.
At least not the people who believe we are really sick in the first place. Wich leaves us with very little support.
The good side is we truly learn to appreciate those that are here and present with us. Support groups like this. Anybody with a kind word of support or understanding.
We also learn to slow down and take care of ourselves. Which many of us have forgotten how to do. We learn to grow a thicker skin { no pun intended} & protect ourselves energeticly from critics. So some may say there is a lesson in all this.
Wow, what a lesson. It certainly isn't an easy one. Or one I doubt many of us would have chosen.
My very supportive and blessed LLMd told me I need to embrace this disease.If I keep fighting { as in denying it } the fact I have it. It will be harder for me to get better.
So I am trying and it isn't easy. As I'm sure it is not easy for you all either. I just keep thinking I can't believe this. Even though I was diagnosed almost a yr. ago, & been sick for 6.
So as I always say when people ask how I'm doing, " I just keep Truck'n" We all do. Hoping & Praying for better days.
I'm not speaking for everyone. These are just my own thoughts and ramblings.
Big Hugs
Love & Light, Yemaya
Posts: 188 | From NM | Registered: Feb 2006
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posted
"My very supportive and blessed LLMd told me I need to embrace this disease.If I keep fighting { as in denying it } the fact I have it. It will be harder for me to get better."
I agree, bigtime!! It does take time to accept. I had already been sick at least 25 yrs, disabled for 7 before being dxd. So by that time, it wasn't so hard to accept!
Hang in there. Anytime you need to talk, just holler!
PS...Knowledge is POWER. The more informed you are, the better your chances of getting well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 25. February 2008, 01:14 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am really enjoying this discussion. I like the humor and the thoughfulness.
All I have to add is the mantra "The studies have not been done"
They still don't have a test that says yes or no.
Cure cannont be defined.
Gazillions of our dollars have been thrown at esoteric microbiology through NIH grants,
Nobody has done really definitive tests on the patients and how they respond to treatment.
The whole thing is a total crapshoot after 30 years.
Just be willing to try the next possibility until you hit whatever helps you. Be patient with yourself, your doctor, your family and other people here who want to help and maybe think what works for them is the answer for all.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I enjoyed everyone's writing on this thread so far. I agree with Yemaya very much and find myself very close to where your thoughts are also. Can you see me through the mist and fog? Through the rushes and reeds? (enter flute player)
Anyhow--many disagree with this but I wrote this at the beginning of Feb: Chronic illness is a drag. I am learning to change my whole life now and accept that I am and will be sick for the unforseen future. It is not a giving up but more of an acceptance that my life is going to be different than I always thought it would be and different than all my peers are experiencing too.
This acceptance comes in waves as any grieving process does, so some days it is okay and others it is more difficult.
Lately with so much pain and disability, it is more difficult.
I am trying to focus more on being rather than doing. Our society is all about doing and achieving and having. I can not live this way with my illness, I will always be a failure if I try to measure myself that way.
Instead, I have to really take it a day at a time and try to remember that it is not my job, my money, my vacation, my ability to walk, run or exercise, be thin, pretty, smart, cool or have children, a family or foster kids that makes me a good and whole person. I am still trying to figure out what does do this, but like I said, if I measure my life by the above things, which is all I have known my entire life, then I feel awful about myself and my life.
I am trying to make a new measuring stick and break the old one. I never knew how much pain and sorrow this would bring me. But then again, I never knew I would be ill and unable to achieve almost all the things I had previously set out to do before in my life. ------------------------------------------------- I know this is a different time line than most, but I have known I had lyme since the tick was attached and I had multiple EM rashes in 1991. I have been diagnosed with Lyme since then by several docs. I have still never really had proper treatment. Perhaps with "proper" treatment I will recover.
I just have a hard time believing that since I get well and do not have symptoms for years---and then relapse and feel like I would rather die each time. Having your dreams dangle in front of your face so close you can smell them --- and then SMASH---you relapse and you can barely get out of bed---it is ---well...there arent words ---and you guys already know.
Thank you for letting me vent more here.
Maybe I will copy and paste my treatise about lyme being a the most ZEN illness I know about.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
You are all so wonderful and wise in each offering of love and words you have given me. I am grateful, and feel blessed for your words & this way of expression that sits before us.
My Great Uncle always says " Strangers are just friends you haven't met yet.
I do realize in life as in this dis-ease we are constantly changing. What we feel one moment is not what we will feel the next.
Trails, I would love to read your dialogue about Lyme being the most ZEN disease you know. I feel you are right on target there.
I used to be an art model. As I sat and held a certain position in stillness for 30 min at a time. I would start to have pain in certain areas of my body. Not wanting to break the position I would breathe into the pain.
It would soon shift or go away. Those moments of complete stillness they were lessons of inner stregnth. {or massachism, jury is still out} Thank you for reminding me of that.
In a way there is alot of Zen in Lyme.
Thank you all again. Yemaya
Posts: 188 | From NM | Registered: Feb 2006
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I have been meditating on this off and on since I became disabled two years ago:
How can I stay in the moment (accept the reality of my current awful symptoms), and yet embrace a symptom-free future (envision and work toward getting and being well)?
This is a fine line to walk, I have found. I am often swept one way or another, into past or future losses (which must be mourned).
I agree about the Zen-ness of this illness. Much to my surprise, I am finding that my formerly type-A personality is okay with just sitting on the couch watching the birds at my feeder. Or the snow falling (as it did today in MN - we got 12 inches!).
posted
I must say that all of you must be congratulated for your comments on how Lyme Disease affects us all one way or another, whether it be a blessing in disguise or not.
I cannot help but agree with everyone of you on how this may touch the core of our very being, changing our way of thinking, believing and doing. And no doubt it will keep on changing throughout the various stages and course of our illness.
I, too, was a BIG DOER, constantly helping others and so forth. Very rarely could I sit still if something needed to be done, whether it was calling my name or not.
Since my downfall, I have started to realize that sometimes I do need to sit back and let others do for themselves, even if they may not do things the way I think or feel it should be done. Sooner or later, they need to learn and will improve with practice.
It is also very hard for me to ask for or accept help from others. And I think some people sense it and may not be there to give me the support when I need it most.
This is especially hard to deal with, especially when thinking of all the time and energy I have given to them in the past. It's so hard to switch from being the strong one to the weak, and I think others have a difficult time in switching roles, as well.
Not only do I have to deal with the frustration and anger of losing my strenth and control, but also the angers of others projected toward me because I can no longer be there for them as much as I used to.
Some of us are so used to giving and helping without a second thought, that we may not consider the consequences such can have on our children, family & friends and their future. It's also part of our responsibility to give them the chance to do for themselves and empower them in their decisions.
I can see (such as my 50 year old husband's heavy reliance on his parents) where too much assistance can make others too dependent and unprepared for the future, which is not exactly a pretty picture once the children have physically grown up, yet not be emotionally and/or mentally prepared.
So it is at this time, when I am not so constantly busy doing, that I can perceive most everything in life needs to be balanced. Maybe this is not only a lesson for me but for others around me as well. Some will be affected and others may not take it in the best way.
Yemaya and Trails, I really can feel for ya, being in the same boots!
Elizabeth, what part of MN do you live in? Eek, a foot of snow! I am so thankful that we've finally begun to see the first sign of spring since this past weekend, and with it carries renewed hopes and happier feelings. Then again, I do recall those serene days of sitting by a window watching the snow falling and birds flocking the feeders.
Posts: 90 | From Maryland | Registered: Jan 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
beautiful thread here
i can't express myself the way i once could and i'm doing sooooooooo much better than i was...
i have to believe that i am not getting everything back - that there is a limit to what can be turned around after years of treatment.
i am much better than i was
i am in a process of mourning so many losses. the latest is that my son and daughter in law are not going to be able to bear children. they tried and even science couldn't help them. it makes me so sad for them and for me, too. i want to be a grandma. they can adopt a child, sure. even that is a process that takes a lot of time and is expensive and frustrating.
the ptsd i battle has taken it's toll as well. i am trying to sit with my feelings and feel what i feel, but it's not very comfortable.
thanks for your ears.
you're here and i'm grateful
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
The pain you and your children are feeling is very deep and very intense. I have been there and have grieved the loss of my own potential children, as I can not birth my own child either.
I also watched helplessly last year as my best friends lost thier one month old and then my sister lost her much wanted and much longed for and MUCH anticipated baby to annancephaly. (A neural tube defect)
Now, not being able to birth my own children seems very minor compared to the pain of losing one that has already been with us. But our "crosses" to bear are all very heavy and painful. I am not saying one is more painful than the other...it was just, for me, going through last year with those losses really put my own in perspective.
I am sorry for your loss. It is very huge. It will take lots of grief work to get through it I imagine.
I cried about my own loss for a long time--at work, while cooking, all the time.
My mom wrote poems about her grandbaby that died last year---( my sis's baby) she had NEVER written poems before. They started just coming right out of her.
You never know where your creative juice is going to flow.
Check out this link--you need speakers turned on to enjoy it.
It is so inspiring to me. I hope it helps you through your day. Plus it is a lot of fun to watch too! Take good care of yourself, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey trails et al
thanks for the link. couldn't watch it at my desk because i don't have flash. most others here do. long story. don't get me started @#$@#@@#
i couldn't hear it but the visual impact was great.
that's what it feels like ... always juggling so much and always in fear of dropping something important. vigilance.
trails, i am very sorry to learn you will not be able to bear children, either. i know that must hurt like hell. and those two babies - your sister's and your friend's baby. my God, what can be worse than the death of a child? sad, very sad.
my daughter is a lymie who is now 36. she was misdiagnosed for years with fibro and chronic fatigue. childbirth is not an option for her at this time (ever?) because of the lyme pain and exhaustian she battles.
my son said something touching about the child who will not ever be. that the baby would be cute and athletic. (like his parents)
thanks for the kind words and the link.
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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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
opti,
Holland is a different place than Italy and one cannot compare countries too well.
Holland is where it's at for me and I do LIKE tulips and wooden shoes.
thanks hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
Change is good and learning to embrace it is a complete journey itself. We need to remember to be good to ourselves and nurture our spirits. thats a whole other thread.
I love that you all have been so receptive and open in this thread. It really helps in the healing process. I know it has helped me in the short time I've been on.
Much Love & Light Posts: 188 | From NM | Registered: Feb 2006
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