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Posted by GenaD (Member # 11988) on :
I relate to everyone who posted.
I was sick since I was a child with Lyme but just got diagnosed in May. I kept getting sicker and sicker.
It is so frustrating to me because there are so many things I want to do and can't. I just got married a year ago and now I'm very sick. My husband is amazing, thankfully, but I feel guilty that I can't keep up with him.
I feel trapped in my body. I have so many ideas, so many things I want to experience, but the body just isn't willing.
On top of that, as positive as I try to be, I fear sometimes that it isn't going to get much better than this.
But I also feel like Savebabe. This disease has made me more aware of things, and it definitely has made me more spiritual. I like myself better in many ways.
Posted by Just Julie (Member # 1119) on :
Moved in to our "dream house" in the semi-country. Had ONE good year after moving here before it all started to fall apart-lyme diagnosis in 2000, when I was 37. Lost the tail end of my 30's, and my love of the outdoor life. That literally tore me apart. But, that's what got me bit in the first place! It's hard giving up your joy.
I found the peace in finding out what was wrong with my kids, though. If I had not come across the lyme diagnosis for myself, my sons would not have been diagnosed, they'd had their individual symptoms for about 2-3 years each before we all got group diagnosed in Sept. 2000, so there is a blessing, I suppose.
The diagnosis also gave me an education into how we'd spend ther rest of our lives NOT tramping thru the tall grass out our backdoor, and shortly before the oldest son was due to start all the "outdoor education" crap that the schools up here in Northern CA mandate starting in 6th grade. So, there's another silver lining.
But, I do feel cheated out of the last best years of my "youth", my late 30's. I was semi-healthy then, and I certainly wasn't this fat. I feel like a fat hag now. The weight isn't moving either at this age, my mid-40's.
Currently, in "remission". Know that relapse is possible, or another tick bite, God forbid. Hoping that the last 7 years of drilling tick avoidance into my son's head's will not be for naught, as they move into their late teens, and hopefully, on their own some day.
I didn't grieve so much for the lost years, because they weren't that long ago, but I have let myself get a glimpse of the grief over losing the ability to go outdoors, hike, camp, walk, into this beautiful outdoors that northern CA is. I literally thought I could feel my heart break in two when I realized that I would never be going out into the open space areas that I so loved. I really loved the outdoors, and I knew it was over for me. I can't really describe the grief over something like that, but I feel pretty robbed of that, still do in fact. Almost makes me want to throw myself on the floor and howl over what I'll never have again.
Yep, the grief is still there. Gotta stuff it back into it's box.
Posted by bejoy (Member # 11129) on :
I feel for you and understand. This is still too hard for me to even talk about at the moment.
I think I'll grieve when I get it all back. (And maybe get some of what I never had at all in my adult life.)
For now, the only way I deal with it well is by joking about it. Some of it's funny, and the rest I can't remember anyway.
When people ask me how old I am I really think I'm 32, but I'm 42. Well better that than the other way around, huh.
At least now I am growing more hair and losing my grey with all the supplements I'm taking. Who says you can't turn back time!?
I just hope I can fill in the gaps in my relationships with richness that makes it worth the wait.
Posted by Robin123 (Member # 9197) on :
Oh yes, all losses, due to having mystery symptoms for 25 years, with no clue as to why. And continued losses now that I know why.
I think it's common to feel much younger than we really are, 'cause we missed out on normal life progression.
But I can also say that I've changed, and I like the new me too -- I'm more understanding, empathetic, patient, forgiving, relaxed, deeper in my understanding of things, more appreciative of small things, clearer in what matters to me, stronger in speaking out.
Also, one more thing; I'd like to respond to Just Julie's comments about accessing the outdoors. It's possible we might be able to do that if protected enough. For example, TKO Orange(www.TKOOrange.com), a concentrate from oranges, kills bugs on impact and keeps them away. I think it could be sprayed on one's immediate camp area and camping gear, along with any other chosen tick repellant you feel confident about, and we'd be able to make it. (Biodegradable, for at least 24 hours)
A woman in New Hampshire said she put grapefruit oil extract on her dog, herself and in her home, and no more ticks.
So upshot of this post: if there's ways that we could get back access to experiences we still want to be able to have.
Posted by CaliforniaLyme (Member # 7136) on :
I lost my marriage to Lyme and years of my life.
I lost my youth, my beauty in the eyes of the world, and my older daughters toddler years.
I thought I had lost all chance of having any happiness or another child, but that turned out not to be true.
I also lost my vanity and my meanness and lack of compassion for anyone who was overweight by even 1 pound. Pre-Lyme I was very vain and very very thin and had never had to try to be that way... I thought you had to be a real pig to be overweight at all. And I didn't see this in myself, but it was there, how I expected to be treated like I was special because of my looks.
And then came Lyme. And MY husband turned out to care more about all of that than I ever dreamed. He said, when my face got swollen from my thyroid, that he was ashamed to be seen with me. I hadn't done anything wrong. It was still me. But not to him. I learned that with him my physiciality meant more than I ahd ever imagined.
So, although I would never have believed it at the time, I am glad he is gone.
I have a different husband now, one who is lumpy and not so hip as my first one, and in fact who is often grumpy and is in terrible health, but it works.
Some of us have probably learned the opposite, that their chosen ones will stay with them and love them no matter what.
I don't wish I had learned that, because then I would never have my little girl, Isadora.
But SOMETIMES I feel like a magic whirlwind came and took me away for ten years now- Lyme- and the way my life was supposed to be- is forever gone- and a couple of those years, they were like ONE long day of agony- and they are just GONE- they were nothing but non-stop pain and pain and pain and endurance-
thank goodness I have no pain today-
I was 29 when I got Lymed- now I am 38-
And life has never been the same.
I try and be grateful
because bitterness is not the way I want to live-
I have been happier since Lyme than I have ever been before Lyme.
IV Rocephin did something to my brain that leads me to believe I was infected since birth or since childhood- because in the 8th month, after I began being responsive in the 7th month, something lifted, cobwebs in my brain, that felt like it had always been there. I felt happier suddenly, clearer, more free, unfettered, than I had ever ever ever been before. In all memory.
And this lifelong anxiety I had had- no, not anything diagnosed, not social anxiety disorder or generalized anxiety, nothing official, but just something I felt mildly my whole life- was 100% gone.
And since then I have felt that clarity and happiness many many times, many days, many years now... thank goodness and IV Rocephin!!
I worry more about the future than the past and try not to do either. But I am living on borrowed time, Lyme time. I am end stage, late stage, tertiary. Any life I have, any life I can keep, is sacred to me. Even the days where my kids are squabbly and annoying and I have to do laundry!!!!!!!!!!!!!!!!!!!!
I don't wish it were any different because I would not have my little one. She came through the loss of my first marriage and the birth of my second.
I was very depressed when my first marriage ended.
He never touched me after I got sick.
3 years.
Three YEARS of never a hand holding mine, never a kiss, never a nothing. Nothing. I was so starved for attention, I yearned for kindness so badly. But he was grossed out by Lyme. Repulsed by sickness. When I got line insertions and begged him he wouldn't hold my hand. Yes, I was bitter. To fight to live
alone-
It was so hard-
And I thought when I got better he would be back, but he wasn't.
It was very painful.
But I am SO GLAD that I learned this about him in my early 30s instead of at 85 at the end of life. I want to have senior sex*)!*)!*)! To the end. Snuggles!!! Hand holdings!! Cuddling! Kisses!!! Niceness!!! Not being left alone to die like trash, thrown away-
And my second husband will most likely leave me a widow and that's okay because I would still rather be with my cats than my first husband.
What is weird, what is weird is that my first husband and I were one of those couples who finishes each others sentences, who walks in step, who dressed alike, who never ever never ever fought!!!! People would always say "Oh you guys-" like we would always be together. We always said, "We got married ONCE." and meant it.
We were such a WE. Yet when I got sick- nope. That was it. No one ever would have guessed.
His best friend died of AIDS and went into dementia and he would sit for hours by his bedside when he was dying.
He said with me that one day he came home and I could not remember our babys name and I served dinner that was half raw and uncooked and half burnt because it had caught on fire (I would forget I was cooking or forget to turn ON the burner but could NOt tell which was which my brain was SO bad)and he could not do it again.
He said he could not watch me die and he was sure I was dying then, because I was just like Jimmy, encephalopathic, and that was it.
But I didn't die.
And he was going to let me die alone.
I never want to do that again. Be so so alone WITH someone.
ANYWAY, I can be bitter if I want, but I don't want to live like that.
For me it is a choice.
At a certain point it BECAME a choice though.
In the beginnning there was the pain and the grief- and I NEEDED to feel that loss, to experience it.
When I could let it go it was time for that, but before, I cried, and the horrible racking heaving howling crying that no one wants to see.
Mourning-
There is so much to mourn-
and so much when you can, to celebrate, if you are still here.
Posted by lymeladyinNY (Member # 10235) on :
Wow, Sarah, so powerful.
I, too, am in mourning. Today I will be sending my 8-year-old son to live in a different home. He has Down syndrome complicated by autism, and with my Lyme disease I'm unable to care for him properly.
He is going to live with a very sweet Mennonite lady about 40 miles from my house. He seems happy there and I couldn't have asked for a better caregiver - but I'm so SAD!! I miss him already.
I also missed out on my youngest son's baby/toddler years. He had to live with different family members because I was bedridden.
I know he feels like I don't love him as much as his brothers because I wasn't there for him during his formative years.
Yes - friendships lost, strained marriage, isolation, misunderstanding - it's all part of chronic Lyme.
I'm just trying to live one day at a time and not dwell on it.
Take care, everyone.
Posted by kitkat32 (Member # 9682) on :
I lost most of my twenteies from lyme.
I don't remember the first 2 years of my sons life. I could go on and on but....I have gained also.
I am such a nicer person. I really love myself and how I care for others. I listen to people and try to help them when I can.
I still go through my moments of sadness and anger from what I have lost but I try not to do that to myself anymore.
I am still not completly well and I am sure there will be other things that I don't get to accomplish in my life..but...it helps me to appreciate what I can do.
kit
Posted by bejoy (Member # 11129) on :
The hard part for me now is to continually force myself back into treatment.
When I herx, I lose time with my children again. No trips to the park or the pool. No nice family dinners.
If I coast, I can show up better right now, but I'll have to be fighting this thing forever, and they will never have a mom who is really well.
But when treatment hurts too much, they are on their own again.
Posted by bettyg (Member # 6147) on :
sarah and llinny,
both very powerful stories that touch our hearts. thank you both for sharing them.
LL, i sent you a PM about yours; my best wishes to you in getting into remission soon!
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Posted by tmd40165 (Member # 12756) on :
Wow, I got chills and teary-eyed reading everyone's posts on this subject. Thanks to everyone for sharing. I had no idea that others felt some of the same things I do. I'm 48 but I feel 30. I always say, I feel like someone added 15 years to my life when I wasn't looking. Because I can't figure out how this happened, how did I get to this age when I feel so young.
So reading these experiences helps me see more clearly that it's about lost years of life and loss of normal life experiences, in my case. I've never married or had children. There are years I just don't remember much about because I spent so much time just surviving.
I've been sick since 1989, and have been through the mill like most here, numerous doctors, etc. But on the upside I've found a good caring doctor (a psychiatrist!)who will work with me on antibiotic treatment. I'd still like to see a Lyme specialist, but that will require travel so for now that's in the future.
Thank you everyone for sharing.
Posted by sick (Member # 9143) on :
I got sick right out of high school but was bite when I was an 8th grader.
When I was 16 I got my license went immediately to look for a job. No jobs in this tiny town.
In my 20's I couldn't understand how everyone else could do so much and I use tried to keep up. I knew I would find out what was wrong and in my 30's life would be normal and I would be able to work.
The 30's passed and I still had hope of finding out what was wrong and having a normal life and being able to work full time.
The 40's hit and I was suddenedly put into the postion of earning enough money to live on for my two kids and myself. My husband decided grass was greener on the other side of the fence. I truly hope it was for him.
I made it thru the 40's and now am in my 50's. I realize I will never have much of an impact on the world. I probably will never be able to work like I always dreamed of doing.I lost almost 40 years and am still losing. I can hardly remember yesterday.I lost the time I couold have spent with my folks and my kids.
I have lost all my freinds many many years ago. Who wants to be with someone who never knows how they will feel the next day.
I suffered in silence for 43 years looking for answers.Now that I've finally found the answer it looks like it will take years for me to even be better.
Some days I feel like I suddenly pop back in reality and wonder where I've been. I really don't think life will ever been normal for me.
sick
Posted by Cobweb (Member # 10053) on :
Life in Full Bloom
An elderly man I cleaned for maintained a greenhouse. He gave me a large geranium plant for Mother's Day in 2004. It was beautiful, lush, bright red flowers exploding from the deep green foliage.
I put it on the porch in warmer weather to soak up the sun and feel the rain. It continued to thrive-as did the rest of my life. But in July 2004 I was diagnosed with Lyme Disease.
Over the next few years I lost my health and my sense of well-being. I lost my job and my source of income. I lost my house and my ability to maintain a home.
The flowers turned brown and withered . The leaves shriveled and lost their grip. The branches became parched twigs. I looked at the plant as it struggled to survive, feeling helpless.
I wondered what was the point of living my life if I cannot paticipate in it, if I cannot feel joy, if I cannot bring joy to others?
When I was forced to move from the life I once knew, I hung onto the plant -seemingly dead except for one small green leaf at the end of a bent and broken stick. There was hope. Hope for the plant-and hope for me.
I go to the doctor's and I take my meds and I repotted the plant. I water it with MiracleGro. Little sprouts of green have begun to appear. Hope grows.
I know it is going to take a while for the plant to revive. Perhaps it will never reach its former brilliance, but it will blossom again-and so will I.
"In this life we cannot do great things. We can only do small things with great love."
Mother Teresa
I love this plant and the joy it brings me with each new bud.
Carol
Posted by Skyler (Member # 11549) on :
I too mourn the 12 or more years that i have lost to this disease.
I mourn the loss of my childhood.
I mourn the loss of my going to college.
For about a week after I got the positive test result (despite personally knowing I had lyme for months) I mourned my life, my disease.
It was good. I feel better for it. I can now move on.
Posted by kam (Member # 3410) on :
This post has me wondering. I had what could be lyme symptoms when my second daughter was born in the early 80's.
I knew something was wrong but docs couldn't find anything except some talk of lesions on my brain and possibly MS after a 20 min meeting with a pysch.
I went on with life and forgot the doctors.
Especially after the ear doc ran hot and cold water in my ear to see if he could bring on the vertigo I was trying to tell him about.
NO more docs for me.
I had symptoms but they did not stop me in my tracks until Oct. 2001.
No longer am I able to work, go to college, do household chores, walk a block or two, sit upright for longer than 10 or 20 min. etc. etc. etc.
I just want it to go away. I just want to be able to swim with the dolphins and travel and be a positive help to others.
From my early 30's to 50 something. That is long enough.
Posted by heiwalove (Member # 6467) on :
this thread has me in tears. thank you so much (everyone) for sharing.
if lyme has given us anything, it has made us kinder, more empathetic, compassionate, more appreciative of the tiny beauties in life that most people just pass right by. hold onto that. hold onto hope.
all my love to all of you.
Posted by Ellie K (Member # 12056) on :
So many heartwrenching stories here, so many brave, beautiful spirits!
It is humbling for me to read all of this, especially today, when I was really starting to drown in despair.
I spent the afternoon just bawling under the covers. I can hardly hold my head up, it all hurts so much, not just my body but my heart too.
I have only been in this for six months and yet I feel that it has tested my spirit in a way that I never could have imagined.
I am *only* 26. I got sick my last semester of law school. I was able to limp along and (just barely) graduate, but I was not able to take the bar exam this July.
I had such grand plans for my life: I wanted to stand up for people who could not find their own voices. I really thought of myself as a fierce warrior sometimes.
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Part of me feels like everything I have worked for has gone down the drain. I had to give up my fellowship for the upcoming year and I have no idea when an opportunity like that will come around again. My loans are going to start rolling in, and I have no idea how I will pay them.
Tonight some of my friends came by to say hello before taking off for their post-bar celebratory trip in Asia. They kept saying to me, "You could never imagine how ungodly hard it was! It was so much worse than you'd ever expect! No one understands."
"Oh really," I said.
But the truth is, I would KILL to be able to take the test right now. I would KILL to have the stamina needed to study 12 hours a day and take a 3-day-long test. I would RELISH EVERY SECOND OF IT. I love my friends, but I grab each one of them, shake them by the shoulders, and scream: "You have no idea how lucky you are!"
I mourn for the chance to work hard for something I believe in.
These days, I feel like a slug, a leech, a parasite who does nothing but suck up life from others.
I cry daily to my sister and mom on the phone. I lie on the couch watching the trashiest of daytime shows, flipping through fashion magazines, trolling celebrity news websites. Anything more is too exhausting, takes energy away from getting better.
I watch the sun rise, the sun set, and I'm still in the exact same place.
I never thought that the mere act of survival--just lying here day in and day ouy-- could be so incredibly trying, that I would ever have to dig so deep within myself for strength when on the surface, it sure does not look like I'm doing much.
Like others, I am now less judgmental, more empathetic, more humble. I know that things are not always what they seem: that sometimes the true battle is just gettting to the next day without losing your mind.
I have learned that sometimes you have to be most valiant when no one is watching, when you are wretching your guts out over and over again into your barf bin and the only witness is your dog.
My boyfriend (who I thought the world of) broke up with me pretty promptly after I got sick. So I think I've lost some of my naivete and eagerness to trust, too.
I know I am wiser for it, but do I mourn that innocence: the belief that all the people you love will stand by you when you are sick.
It is scary when you realize that someone you thought you loved and respected, when it get downs to it, is pretty hollow on the inside.
At the same time, it can be all the more uplifting when you experience compassion in places where you never thought you'd find it: like an internet message board!
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Posted by NatalieA (Member # 7714) on :
I miss the person I used to be and wonder if I will ever get back to that place. The worst part is I wonder if my girls are going to look back at life and think of me as the "sick mom" and that's how they are going to remember growing up..with their mom sick on the couch a lot...that really makes me sad. I hope they don't, but I don't know. That's really the worst of it for me.
Posted by Dizzyygirll (Member # 3576) on :
In 2000 when I was sick and hadn't been diagnosed yet, I let my oldest daughter go live with her father in NC. I wasn't able to handle an 8 year old and a 6 year old. Helping with school work, cleaning, cooking and just plain spending thime with them....All I wanted to do was come home from work and sleep. When my daughter asked if she could move in with her dad, I said yes. If I hadn't been sick I know for a fact I would have never let her go. I really regret it now because I haven't seen my daughter grow up into the beautiful young lady that she has become. She came to visit during the summers but I missed a whole lot. I have my youngest daughter still with me but you want to be a part of both of your children's lives because they are so different.
That is the most devastating thing that Lyme has taken from me!
Posted by treepatrol (Member # 4117) on :
Lost years of my life
Tell me about it. Suffering too
Posted by pmerv (Member # 1504) on :
Some of you have been through more hardship than I have. I was able to care for my children, hard as it was. My husband stood by me. I never was so much neurologically as physically impaired. I still "lost" years of my life, when I felt like hell and couldn't do what I wanted to. I am still crippled from Lyme.
However, I always felt Lyme was a strange kind of blessing, too. I wouldn't wish Lyme on my enemy, but somehow it made me a better person. It made me appreciate good days. It made me not take good things for granted. It opened up a world for me I hadn't known existed. It showed me that many people are much worse off than I am. It gave me the opportunity to use my own situation to help others. As happened to Sarah, it threw me off that superficial level into a deeper experience of life, where I understood the true value of things. It introduced me to many wonderful people. It gave me my life's work.
I've always been an optimist and seen the glass half full. It's a blessing and it helps. I hope those of you for whom Lyme has caused such grief and loss can find a silver lining.
Phyllis
Posted by pmerv (Member # 1504) on :
I heard a joke once: something about when Mozart was my age, he'd been dead 10 years.
And as one of my friends said when she was laid up with back trouble: "At least we still have our mouths!" (meaning we could talk - and eat)
We have the internet and we have each other. We are all alive. It's something.
Posted by bettyg (Member # 6147) on :
Phyllis, I enjoyed reading your positive posts here .... making lemonade out of LEMONS! very thought-provoking!
Posted by CaliforniaLyme (Member # 7136) on :
I try and think like that too, Phyllis,
it takes practice*)!!!!!!!!!!!!!!!!!!!!!!!!!!!
I remember feeling like that NatalieA, when I was bedridden and had a toddler, and now I am SO glad she, 10 years old now, has THIS mother, me, who is so much more of a good human being than the person I was before Lyme. Before Lyme I was very shallow and didn't know it. My weight and how I came across re prettiness mattered a great deal to me. After temporary facial massive swelling / disfigurement from Lyme I don't care much about that at all and am a much better person for it. And a much better mother!!!
I get to teach my daughetr to be a good human being, which honestly, I really wasn't pre_Lyme.
I thought I was, but I was so selfish and so self-absorbed. I am still selfish and self-absorbed but I am also a good friend and there for others today- Lyme taught me that. Lyme taught me a lot.
I changed my whole social group after I got Lymed. The people I was friends with pre_lyme were all horrified by my facial swelling, not just my husband. They were all young and hip and when I needed them, they were not there.
Lyme taught me I had not chosen friends wisely.
They were more interested in going out and having fun than being there for a friend in need.
And that is on me, because I chose them to be friends...
I get to share that with my daughter too. To really examine her choices re friendship. Does she really want to hang out with the little girl who is fun fun FUN and pretty but makes fun of other kids? I teach her to really think about who she spends time with. She has choices and I want her to make better choices than I did...
I think she is already a better person at 10 then I was at 25.
Thanks to Lyme-