bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
So here's my sad story. I seem to feel better when I can get it all out.
Part One:
The neighbors stopped by today, and noticed I was planting some flowers. They commented that I hadn't done any gardening last year (indeed, not even any raking or mowing.)
I said, yea I was too sick last year, and I got the blank stare. You know the one?
They know I have/had lyme disease. I told them all about it on a couple of occasions. Always the blank stare.
One is a PA, the other a nurse. We live in a hospital town, and our street must be medical row. Almost everyone seems to have medical and/or psychiatric training, even in these modest little houses.
The only friends I have been able to keep through all this are the neighbors who didn't move away. All sweet, kind, well-meaning ducklings every one!
I have gotten the lecture about IDSA testing (I'm posistive on a PCR, but neg according to Labcorp.)
I've been advised by one to just take some Doxy, and from the other, don't go trying to diagnose myself with Lyme, because it's not curable, and I'll never get better anyway.
So if it comes up I just say I was sick last year (and the year before, and the year before that, and...) End of story.
You know what I want to hear? It's this:
"Oh my gosh, that must have been so hard for you. I know how much you like to garden. You must have been really sick not to take care of your yard. I'm so sorry you went through all that."
"You are looking better. Are you all better now, or still working on it? Do you want to talk about it? Do you want to go get a coffee sometime?"
Part Two:
So what I'm dealing with now is difficulty finding my gratitude. I got well. I can plant flowers. I can play with my children.
I have no right to complain, especially here of all places. I'm talking to people in constant chronic pain. I can finally sleep at night.
I want to find my gratitude for my health, and instead I find that I am still just soooo angry.
Somebody road raged at me today and called me an a-hole, I don't even know what for. It's scary how close I came to riding right up on his bumper and following him home, with my horn blaring. But lyme and lyme rage has also taught me restraint.
I look around at my garden full of weeds that I fought through the pain to make flourish a few years ago.
I just feel like I can't start all over again. Again.
How many times have I gone into remission by eating right and cutting out sugar and dairy, and every other fun thing, and by exercising religiously.
I can't seem to count all the climbing back out followed by crash and burn episodes.
Some part of me thinks that I'm finally through it because this time I found out what is wrong with me, and actually treated the disease.
Another part of me is afraid to try again, for fear of losing everything again.
Another part of me is so angry that I am too rebellious to try to pick up the pieces, although I still do, one dirty sock at a time.
Who did you talk to about this stuff? Not the neighbors. Not the "friends" who disappeared when I stopped being able to pick up their kids after soccer practice, feed them, and keep them overnight.
Ran into one of those yesterday. She asked how my daughter was doing in school. I said she was out of school since her hospitalization. She suddenly had to go.
I do have one friend left who I can call, but she's pretty tired of this conversation by now. I'm trying to be a friend back, for a change, instead of the one who's on a downer.
I don't like talking to my husband about it. He tries to cheer me up, or he gets into his own pain about how absent I have been. It scares him to see me sad or angry.
I'm not at a place yet where I can be with his pain about how I have not been there for him.
Part Three:
Shouldn't they throw us a party? Don't you think?
Is there one of us who doesn't deserve a full on party, with presents.
It can be small, so as not to be overwhelming to the senses, but it should really be decadent.
I want the neighbors, my old friends, and my family to show up at a survival party prepared in my honor.
(At my house so I can be comfortable, and take a nap in the middle if I need to, but everybody else does the cleaning up.)
There will be red wine and cream puffs, and all kinds of fancy hors d'ouvres. There will be a live bluegrass band playing in the yard.
I want big juicy hamburgers with whole wheat buns and pickles, or the choice of Wild Atlantic salmon steaks off the grill.
People will bring me heart-felt cards rejoicing at my recovery, and lamenting about my years of hardships, and praising me for my incredible wisdom at finding the cause and the solution to my suffering.
They will bring me the most thoughtful gifts, including certificates for a full-on spring cleaning, and weekly maid service.
The certificates for massage and spa services will flow. They'll offer babysitting for a week, along with the all-inclusive for my husband and me in Mexico.
They'll even replace the sets of glasses broken due to neuro tremors.
You all will be my guests of honor. I'll send the limo to pick you up, and I will provide dozens of lazy boys by the campfire on the patio.
The reflexologist will make the rounds with foot massages, and the caterer will bring you out the most incredible sugar-free chocolate torte on the planet.
Part Four:
This is the anger and rage PTSD from all the time held hostage in a body and mind that could not work.
My mantra was just to be joy. Be in the present. Find love. Be love. Eventually that ran out two, and I just got dead inside from all the pain.
Now that I have my life and my body back there is still all this stuff that got stuffed inside of it, from each time I needed to howl with agony and rage,
and couldn't because there were children in the house, or I couldn't feel anything at all, or I just wasn't willing to terrify my husband again.
I look at my garden full of weeds, and dead tomato plants from two years ago, and I feel a hopeless sense of exhaustion.
But it's not about the garden. It's about so much time spent wanting so much to live, and to pull those weeds and make something flourish, and being unable to walk away from my kitchen table.
Every weed I pull is a testimony to my years of captivity. If I pull it, how will anyone ever see what I felt.
I'm like a soldier returned from war, unable and unwilling to describe the horror to those I love, and required to get back to life as usual.
-------------------- 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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Cobweb
Unregistered
posted
How do you know you are POST lyme?
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
How do I know I am post lyme? Do we ever really know? Just based on how we feel, for how long, and what we can do, I guess.
I don't like the word "remission." It scares me. Every cancer patient I ever knew personally who was labeled "in remission" died.
So I base my aessment of post-lyme on the list I made about six months ago of what well would be like, and also on muscle testing, which got me this far:
Free of pain, brain fog, and overwhelming fatigue for two months or more. Been there since December, even through my daughter's hospitalization.
Had a scare in February, but it turned out to be food poisoning and then the flu.
I'm still tired. And I'm still vigilant. And I'm still working through how a life time of lyme has thrown a wrench into my best laid plans.
Other than being tired and emotional, I seem to be able to do life like normal people do.
I can grocery shop without a list, and get what I came for. I can load bricks into a pickup truck and clean out my attic. I can get all the laundry done and put away before it's time to do it again.
I can develop a homeschool English literature and writing curriculum for my homeschool daughter, and bring a sack load of resources home from the public library, and practice the mandolin
I can run three errands in a row without running red lights and getting lost three blocks from home.
I can run two miles, go to work, play with the kids, fix dinner, clean up the house, and go out to a show all in the same day, and get up in the morning and do it again.
I don't take one minute of this for granted, because a few months ago most of this would have been impossible.
I don't mean to rub salt into the wounds of those who are here struggling for their lives. I feel for each of you with every ounce of my being I'm just trying to do what it takes to get completely well from this thing on all levels.
I love you Cobweb, and I'm glad you asked. It's one more place where I feel alone. My testing was PCR rather than IGg, my protocol was alternative, my success relatively rapid, so all of those are suspect.
My experience was clear. Childhood in the CT woods. Multiple tick bites. Almost every symptom on the ILADS list. Horrible herxing, now better.
I suppose it may be time to move on for support of this type, but where to? I thought perhaps there might be more lymies in remission out there who could relate.
-------------------- 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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posted
I'm rapidly learning that most people don't get it and cannot make themselves understand. I'm sorry for what you've been through - and a party would be fantastic, I think!
Posts: 33 | From RI | Registered: Apr 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow. That was very moving and so truthful.
I am so sorry for your fears of "again".
When I get to "post Lyme" I want to twirl around for the simple joy of being.
Even if it is only for a day, a week, or a month.
I am not too greedy. I will take whatever I can get.
These neighbors of yours....My Mom always tells me this about people who upset me.
If you knew you were dying and could have anyone in the room with you....
Would that person be one of them?
Not! You are a survivor. You know it and we know it too.
Celebrate that. Pull each weed and say "Yeah, I did it!"
You do deserve a party. Throw one for yourself.
Go do something really nice like a massage.
There are people out there who may not understand but possess
A lot more compassion than the people who upset you.
Put out that energy and it will come back to you.
Plus......you have so many friends here who really care about you.
It is not the same thing as being there, but take that love
And wrap it around you like a warm blanket.
Know you are worth knowing and caring for. Just need to find the right people
Who are just as caring and compassionate as you are.
This disease does isolate us. More so as we can truly see others for
What they really are or what they really want from us.
Just one question. I realize by your description that you want a tasteful party,
But can we just have one male stripper?
Sending you love and positive thoughts.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
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posted
I'm not yet "post lyme" but I understand how you feel on many levels. I hate the blank stare I get from people too when the subject comes up. It would be nice if they at least showed that they recognize the fact that I've been through hell.
It has shown me people's true colors and that that my friends were only fair weather friends as they have all faded away. Even my only sister has distanced herself b/c as she says "it's difficult to talk to me these days". That must be b/c if she asks me how I'm doing, I tell the truth. I thought I could do that since she's my sister but I guess not.
I know it's hard to move on. I know that I have PTSD from all this even though it's far from over for me. I wish I knew the answers on how to move on. I find it especially hard that no one really knows what we've been through and couldn't possibly realize the trauma unless they've been through it themselves.
I probably didn't help at all but at least you know everyone on here can relate. Thank God for LymeNet. I'd don't know where I'd be w/out it right now. This is the only place I can find others who understand.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Cobweb
Unregistered
posted
Bejoy- sounds like a good post lyme clinical diagnosis.
A lot of people must think I dropped off the face of the earth-my inability to stay in touch, return phone calls, send cards, drop by, etc-can't wait for their reaction when the comeback kid shows up.
Hopefully through our experience we will recognize that same post-whatever aloneness in others and make a connection. No blank stares from us.
There still seems to be a quantum leap between what I imagine my self doing and what I actually do.
Part of that is because two months after stopping antibiotics, but continuing on the supplements, I found a deer tick so embedded and inflamed on my stomach they had to numb my belly to cut it out!
So I got slammed with Doxy again for good measure.
I since learned that ticks don't like the smell of lavendar-and I love it-so now everything is lavendar lavendar lavendar for me.
Others may not realize our resilience-but at least we know the true measure of our depth.
Perhaps the Success Stories Thread would help. Hang Tough, Cobby
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posted
You are such an amazing writer. I really enjoyed reading; i can relate in almost every way.
Posts: 370 | From NJ | Registered: Dec 2007
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bettyg
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posted
quote:Originally posted by trish4:
You are such an amazing writer. I really enjoyed reading; i can relate in almost every way.
joy, what was your job PRE-LYME? YOU ARE SUCH A TALENTED, SOULFUL WRITER. i'd buy a book that you wrote; so get going girl; i want to SMOOZE UP TO YOU, A FAMOUS PERSON!!!! ***************************************
joy, thanks for your thoughts/feelings with us all! good luck on re-entering your POST LYME years!
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Bejoy,
You are truly heaven sent. I woke up this morning feeling so depressed because, even though I, too, am post Lyme/Bart and have low levels of Babs that LLMD wants to "wait and see" due to me having absolutely no clinical symptoms, I still cannot run outside and jump for joy.
You wrote:
"I'm like a soldier returned from war, unable and unwilling to describe the horror to those I love, and required to get back to life as usual".
I said these exact words to both my parents and best friend. I even compared it to being in prison and finally being released but having no life to return to.
I feel guilty as so many people are just LIVING for this day when they feel well enough to shower, go to the gym, do simple errands and NOT be on toxic medicines. Yet, I find that I am paralyzed with sadness and fear.
Being a congenital Lymie, I've spent my entire life getting up, falling down, getting up, dusting myself off and then falling down once again.
My heart is filled with anger, resentment, sadness and a fear to "try again." After 40 years of this roller coaster, I absolutely know that I cannot emotionally handle another fall. I would rather die.
I feel so selfish and ungrateful for having these thoughts, I do. But you have just validated that it might just be "normal" to be in a catatonic state...at least for a while.
I walk into my closet and I don't even remember all of my cute clothes and shoes and jewlery because I've lived in sweatpants and pajamas for a year.
I think it is a form of post traumatic stress syndrome and I plan on going to therapy to talk through these issues. I need help crossing the threshold of my door and walking back out into the sunshine.
These TBD's have made me feel defective, deformed and completely abnormal. I look normal to the rest of the world but I want to scream, "can't you see the gaping whole in my heart, in my soul, in my mind??"
As I type this, hot tears are streaming down my face because I don't even know where to begin. Part of me wants to just hide under the covers and another part of me knows, due to all of my hard work and the strength I've had to get through this hell, that I need to get out there and get back into life. Most importantly, I deserve to have normalcy, health and happiness.
Baby steps. I think we need to be gentle with ourselves as the emotional and physical toll these TBD's have taken on our lives is astronomical. We never asked to be ripped out of society and placed in bed for months/years on end in agonizing pain. We were forced to make the best of that life, so of course, it's all we know.
Thank you for sharing your very private and emotional thoughts. It makes me feel a little more "normal" and less guilty and weak about the next steps which, when we're ready to make will be exciting and beautiful.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I went to sleep last night wrapped in the blanket of your love.
I need validation that people can't give unless they have been through something so difficult, and have recovered or are in recovery.
I'm not just talking about a disease from a bacteria. I'm also talking about the physical and emotional pain, self-doubt, and isolation, that comes from harboring a disease whose identification and treatment is largely disowned by the medical community.
Thank you for providing that validation for me.
I think sometimes I see judgment in those blank stares, when really what is there is innocence. I don't really want my dear young neighbors to be able to relate to my experience, when it comes down to it.
The blank stare people came by later with hugs and and invited us to dinner. A friend of theirs who is a chef came over to cook, so I got a nice party after all.
Ironically, they were concerned about my husband, who seems to be passing a small kidney stone. They are so willing to support those medical issues they understand. They even kept our dog for a week when my daughter was in the hospital.
I don't have to like it that very few people besides you guys will understand or validate my experience, but I am going to accept it for now. Nobody else is going to throw me my lyme party. But I might even throw one for myself, eventually.
Geneal, for you we will have a whole pile of male strippers!
I'm feeling much lighter today, having allowed myself to sulk and cry those hot tears.
Last night my husband did me the favor of putting new strings on my mandolin. Two of the high thin E strings snapped with a loud twang in the process, and he had to start over.
I've been feeling a bit like an E string tuned too tight. I keep smiling and choosing to be happy, whether I feel that way or not, in the midst of the struggling and suffering. Eventually if I don't get real and release the tension, I'm going to snnnnnap!
Writing about it helped release the tension in a safe way, although I know there is still plenty more in there wanting to have a say.
Carol, I did wonder where you had gone. Sorry you got bitten again. The wretched nasty little arachnid!
I expect that because of lyme I will turn into somebody with more depth and compassion. I guess when I get there, I will consider that a very good thing.
Perhaps today I can balance my lyme rage by counting my blessings. Yesterday I made everyone leave me alone in the dark bedroom to cry. Today everyone is giggling, wiggling, and westling, and screaming around me on the bed as I try to type.
Betty, I've had many professions pre-lyme dx: artist, wilderness guide, nomad, counselor, energy worker, student of natural medicine, and mommy. What's next? Who knows.
I believe I promised you an autographed copy of my book in my very first post here. The promise still holds true. I'll still remember you when I am rich and famous. He he he
-------------------- 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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bejoy,
I can hardly wait for that roomful of male strippers!
May make my tachycardia issues really bad.
I am glad your neighbor's came back and invited you to dinner.
Maybe they are scared of what they don't know or understand.
I put in some watermelon plants today...and Japanese eggplant.
I love gardening too. It wears me out so much.
However, the therapeutic touch of the dirt, the warmth of the sun and
The promise of growing something makes me (inside) feel better.
Keep us posted my friend on how you are doing on this journey.
You never walk it alone.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
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posted
quote:Originally posted by bejoy:
Betty, I've had many professions pre-lyme dx: artist, wilderness guide, nomad, counselor, energy worker, student of natural medicine, and mommy. What's next? Who knows.
I believe I promised you an autographed copy of my book in my very first post here. The promise still holds true. I'll still remember you when I am rich and famous. He he he
Joy, YOU'VE GOT A BETTER MEMORY THAN ME! YOU'RE ON!!
so glad you had a good night sleep with all the love of all replying above.
now for all of you down in the dumps, i'm going to hijack this thread for 1 minute only!
CALL MON. YOUR FEDERAL SENATORS/HOUSE REPS AND ASK: 1. that they CO-SPONSOR HR 741 OR S 1408 2. THANK those who have signed on to date!! 3. ask them to call Dangell's office for HR 741 bill to GET LYME BILL ON AGENDA LIST! **************************************** 4. ask them to call SEN. KENNEDY'S office for S 1408 to GET LYME BILL ON AGENDA LIST!
5. then call KENNEDY, PALLONE, ^ DINGLE'S OFFICE...see other threads for phone nos and bill nos!
that will make each of you feel EMPOWERED; we're fighting for our lyme rights to have funding and research and our helath insurance companies paying their FAIR SHARE of our lyme bills!
10 years our bill has been in congress; let your fingers do the walking....
now Joy/others, we have many gifted writers in our lyme community! may we each receive the care WE DESERVE, RECOGNITION THAT LYME IS DEVASTATING TO PATIENT/FAMILY.
joy, ALL of your posts make me feel WARM AND FUZZY! YOU ROCK JOY!
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I'd like to share with you that I spent almost a year after I first went into remission just digesting that I had this chance again to be healthy, and trying to figure out who I was and where I wanted to go with my life. My past friends were all but gone; my self-identity was gone; my life, as I knew it, was gone. It's as if I stepped off the merry-go-round of life and I was now lost.
I sat and thought for months...here was this chance at a new beginning and I wanted everything to be different. I started by painting every room in my house a different color...it all had to be different. Then I decided on a new career and went back to school. All was going along pretty well until tragedy after tragedy happened in my family. Now I'm relapsing, but on the mend again!
My point is this: take your time so you can truly feel how wonderful it is to have this chance. Make a conscious effort each day to appreciate your pain-free body. Then start to live in the present and make new relationships and new beginnings, and truly appreciate these new people in your life.
I wish you a long and happy wellness!
P.S...you might decide, like I recently did, when I find a new doctor(s) I will not tell them about my Lyme. Docs tend to look at me like I have three heads and 6 arms when I do that! They don't need to know everything...after all, they are only PRACTICING medicine!
-------------------- Nancy Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003
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posted
Oh, bejoy, your words truly are inspirational!
quote: I have no right to complain, especially here of all places. I'm talking to people in constant chronic pain. I can finally sleep at night.
Of course you do, you've been there.
quote: I can grocery shop without a list, and get what I came for. I can load bricks into a pickup truck and clean out my attic. I can get all the laundry done and put away before it's time to do it again.
That is awesome!!
Thanks for your truly inspirational words
carly
Posts: 797 | From New York | Registered: Feb 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Google Quote of the Day:
Coming home from very lonely places, all of us go a little mad: whether from great personal success, or just an all-night drive, we are the sole survivors of a world no one else has ever seen. - John le Carre
-------------------- 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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This is a great thread! I am so over people who don't understand. I am blessed with a great husband and family and a few close friends who "get it" I was dx almost 5 yrs ago and am in relapse mode right now after a "remission" period - it just sucks...prob lyme pos for 30+ years though
Anyway, I've been dealing with this for so long and my husband's friends and their wives have been totally useless. Recently, one of these "friends" had an outpatient surgical procedure and we were asked to contribute to a fruit basket.
I've never even got so much as a card in 5 years from them!!!!
Arggh!!!!!!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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I find the vast majority don't understand. Those who do understand want to hear more.
Part of it is also our perception ..... we are looking at the world from a different place than before. We have suffered and know what suffering is.
Not only do people not understand Lyme Disease, but on top of that they don't understand suffering.
I honestly think most of them just don't know what to say.
But about the kidney stones ..... that they understand and can relate to.
Maybe this is a call to you to reach out to others who have no one to understand.
Don't worry too much about the weeds .... they will still be there later. Go as slowly or as quickly as you want.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
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Member # 11129
posted
Up in response to a post in medical. Hope this helps.
-------------------- 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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lymemomtooo
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Member # 5396
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bejoy, Sorry I missed this when it was first posted. I hope you are still partying away.
Most on here get it, so you were not alone. hugs, lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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carly
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