The other day I was thinking about this... Ever since my diagnosis in June 2007 Lyme is on my mind every day. I guess it kind of has to be because I'm reminded of it everytime I have to take antibiotics.
I can't wait until the day that I can go days without Lyme Disease crossing my mind. I can't wait to be free from taking medicine day in and day out.
Okay sorry for the stupid post, but it was just something that was on my mind.
Posted by Geneal (Member # 10375) on :
Gosh maybe it is rather telling that I would
Probably notice it more if I didn't take medicines daily.
I don't think about it like I used to.
It is just a part of my life and a part of getting well.
I don't think Lyme disease will ever be far from my mind.
I have too much at stake with two young children with it.
Also a husband who is not treating and affecting
Some very difficult behaviors.
I guess I just have assimilated it into my life.
Hugs,
Geneal
Posted by jkmom (Member # 14004) on :
I think about it a lot every day. I've recently been wondering if I think about it too much. My daughter is too sick to go to school and doesn't even play with friends, though, so I've kind of decided it is normal to think about it so much.
I'll be glad when I can go without thinking about it, too.
ETA: I hardly ever think about my Lyme. I'm taking abx for a few symptoms but most of the time my symptoms are under control and I forget I have it.
[ 03-12-2009, 09:01 PM: Message edited by: jkmom ]
Posted by Tincup (Member # 5829) on :
1. You are thinking. That's a good start.
2. If you had a 400 pound frog in your living room... wouldn't you think about it every time you went in the room?
You MIGHT even think about it while you were driving down the road, while you were at the grocery store... and even when you went to the beach.
A 400 pound frog is hard to ignore.
And WHY would you be thinking about it?
You MAIN thought would be ... "How can I get rid of it?"
Same with the Lyme.
What you are going through is normal.
Or we are ALL crazy!
Posted by adamm (Member # 11910) on :
All day every day. It's an active brain infection, so it couldn't be otherwise.
[ 03-13-2009, 10:52 AM: Message edited by: adamm ]
Posted by sixgoofykids (Member # 11141) on :
I have days where I do not treat and do not have symptoms, yet not a day goes by that I do not think about it.
Posted by Keebler (Member # 12673) on :
-
This sounds like a trick question from a doctor. It's not so much that we think about it as it is evident every waking moment.
It's like asking someone with a load of bricks on their head if they think about those bricks everyday as if, if they just didn't think of them, they might not be such a bother.
All that in mind, it is wonderful when I can forget about it for a little while. With chronic vertigo and severe sensory dysfunction and severe fatigue, that's hard to ignore but I do try to still enjoy the sky, trees, etc. and the rare time when I might be able to see a friend.
Even if I am aware of the load of bricks, I try to still enjoy what I can. But, oh, my, would the enjoyment come more easily without that load of bricks!
-
Posted by Leelee (Member # 19112) on :
Although not officially diagnosed, I am sure I have Lyme. My first appointment with a LLMD is Tuesday.
Since I first figured out for myself three years ago the root of all my symptoms, I can honestly say I have not gone one day without thinking about Lyme.
Maybe I think about Lyme all the time because I have so many awful things going on with my health and maybe part of it is the sheer frustration of trying to get a doctor to help me.
Posted by bwillis (Member # 18811) on :
every day huh!!! Every hour, or more
Posted by METALLlC BLUE (Member # 6628) on :
I would say almost constantly.
Posted by rachellemarie (Member # 16419) on :
I believe that what you give your attention to can grow and "get bigger". I used to think about Lyme all the time, however now I concentrate my thoughts on what I will do with my life once I get better. And no, I am not symptom free today, but I think that is a good way of getting there.
Posted by Starfall1969 (Member # 17353) on :
Not a stupid post at all.
Yeah, i think about it every day too, and I don't even have an official diagnosis yet.
I stopped seeing my psychologist for now because I got tired of the constant pushing towards me thinking this is all in my head.
He feels that it's something that I'm thinking myself into, that I wake up thinking I'm going to feel bad, so I do.
So, yeah it's like having a ton of briks on your head and having someone tell you it would go away if you didn't think about it.
If I could get to a point where I didn't feel like crap all the time then maybe I wouldn't think about it all the time.
Posted by steve1906 (Member # 16206) on :
I wish I didn't but...
I think about it all day every day!!! constantly, constantly, constantly...
It sucks that LYME runs our lives and we can't run it.
Steve @@@
Posted by Kreynolds (Member # 15117) on :
Even when Im sleeping..... Posted by AZURE WISH (Member # 804) on :
I think i would have an easier time ignoring a 400lb frog
Its not that i think about lyme as lyme... it is that I have to deal with a spine that feels like it is being split in two every minute of every day and taking a breath makes it even worse..
plus a long list of other symptoms that have me house bound and unable to cook clean etc. Its not that i am sitting around thinking oh my I have lyme...
its that i am thinking o my how am i going to get a shower with this that and the other to contend with.
Posted by Wonko (Member # 18318) on :
I an improving, but I am symptomatic enough that I can't get away from thinking about it much.
When I can get away from it, it feels good. Posted by Dekrator48 (Member # 18239) on :
Yes, I think about it alot.
I think that is normal for all of us who are not completely well....yet.
Posted by Keebler (Member # 12673) on :
-
It may not be so much "thinking" about it as affected by the symptoms - or thinking about solutions and changes in self-care that will help. This requires a lot of work.
-
Posted by nomoremuscles (Member # 9560) on :
Yes.
Posted by Geneal (Member # 10375) on :
I "thought" about it and realized that
I tend to look at other people and see Lyme
Or the possibility of it almost everyday.
Strange that I don't really acknowledge mine anymore,
But I do look at some of the people I work with
And wonder why they have these chronic GI issues,
Or why they are always tired.
Often I think it about others...definitely more than myself
And the role Lyme plays in my life.
Hugs,
Geneal
Posted by LaurenTurner (Member # 12320) on :
quote:Originally posted by Geneal: [q] I "thought" about it and realized that
I tend to look at other people and see Lyme
Or the possibility of it almost everyday.
Strange that I don't really acknowledge mine anymore,
But I do look at some of the people I work with
And wonder why they have these chronic GI issues,
Or why they are always tired.
Often I think it about others...definitely more than myself
And the role Lyme plays in my life.
Hugs,
Geneal [/q]
Me too, Geneal. My friend's 10 year old son is having hip problems. He didn't do anything to injure it so it makes me wonder.
I also wonder about my mil who hears ringing in her ears all the time.
My brother who has psychiatric problems.
My sil who sometimes feels faint and was told it's because of panic attacks. And she's pregnant right now.
And last week while waiting to get blood taken there was a girl in there who was scared to get her blood drawn. I got to talking to her and her Mom and the girl had been in the hospital for the last 2 weeks with headaches and arthritis. The doctor couldnt' figure out what was causing it. I told her about Lyme Disease but who knows if it will do any good.
[ 03-13-2009, 10:34 AM: Message edited by: LaurenTurner ]
Posted by 2roads (Member # 4409) on :
Constantly.
When you have loved ones, or you are very sick, you do.
The day I forget Lymes is the day God takes me home. Posted by hoot (Member # 19281) on :
My son is autistic...so I think about autism all the time.
Now that I think his autism might be related to autism, I am thinking about lyme (or maybe bartonella) as well as autism.
Jen
Posted by Judy G. (Member # 18498) on :
Yes, I think about it a lot. Sometimes I go for awhile without thinking about it and then I say to myself "Hey, I wasn't thinking about Lyme!"
Posted by keda (Member # 18954) on :
I think there may be a subtle difference with
thinking about Lyme all the time and being
totally obsessed with it. It's ever present,
seeped into our very cells, but that doesn't
mean it has to posess us. It and its cohorts
may be destroying us from the inside out, but
that doesn't need to mean we give up. Many of
us seem out of our minds with worry and grief,
but, again, that means we are still trying to
live with Lyme. Not that it has taken us over.
Sure, I spend long hours researching, soul-
searching and just plain searching (for my keys
and stuff).
I find I have a heightened response
when someone presents me with a set of symptoms
that sounds like Lymes; they could wind up sick
and die.
Lyme is my diagnosis. Lyme is a cellular toture
device. But Lyme is not my life. My life is
what I am fighting for.
Posted by tonyp (Member # 14960) on :
Thinking and obsessed with Lyme 24/7 for the last 1 1/2 years. There is not a day that I do not do some research to try find a way to beat this thing.
Alot of my family and friends, think that I am crazy about this obsession. They say that if I were too back off, then you would start to enjoy life again. I am not going to disagree, however that is not the way I am wired. I am going to do anything and everything to educuate myself on new methods of killing, detoxing and improving my overall immune system
My LLMD did have a good comment to me on my way out of my last appointment. He said that alot of his patients think that Lyme has to be a life long sentence/disease. He did say that there was almost a cult type movement with Lyme people, partly due to the internet which connects all of us. He said it does not have to be and in fact alot of people to get cured. His meaning was positive and he basically told me to start enjoying life as this Lyme will get under control
I have tried to back off, but still find it difficult until I am fully cured
So
Posted by ThatColorGreen (Member # 16016) on :
yes.
and sitting at home, not being able to do too much reminds me of it, even when i dont mean to think about it.
as for the whole 'the more you think about it..etc etc' I was quite the health and exercise nut. i was being treated for food allergies and kept telling myself 'i am getting so much better'
until the big crash came. it's been downhill from there. I told myself for MONTHS that what i was feeling was just 'out of the ordinary'
and i still worked out (or at least attempted to) the way that i had been.
until my body put on the brakes and now i cant even go for a walk without having multiple discomforting symptoms.
so .. as for that lifestyle change, its really hard not to think about it.
Especially when i have a picc line in my arm and hook myself up to some sort of IV everyday.
The way I feel reminds me of lyme, let alone the things i cannot do, have to do, etc etc....
And Keebler, well said.
Posted by bettyg (Member # 6147) on :
definitely since i spend some hours daily here helping all who come to the board looking llmds, general info, etc.
if i wasn't here where it's IN MY FACE, perhaps not as much until i get out my neck and lower back frozen ice packs which i keep on myself all my waking hours to numb my total body pain.
it's reading all the stories that make me very GRATEFUL for the shape i'm in compared to many of you bedridden for years, etc.
i thank you god each time i read those posts, and count my blesings! Posted by AmandaM (Member # 17466) on :
It's gotten to the point where I almost have nothing more to think about AND talk about.
Posted by Cass A (Member # 11134) on :
Every day!
I do research, look at posts, etc.
Love,
Cass A
Posted by donaldmn (Member # 16717) on :
My husband walks around everyday feeling like he's got a vice around his head, from the moment he wakes up till he goes to sleep-no way at all to ignore that kind of feeling.
Then every night, he hooks himself up to an IV through his arm Picc line. That's his nightly ritual now before bed.
My Sister was also diagnosed with LD recently, and has bad neuro symptoms. We talk on the phone daily, and it's about all we talk about.
Even I may have it, so that's constantly on my mind-but since I feel fine, I'll stay in denial as long as I can.
This disease has certainly consumed me and my family in a way I never imagined-and I can't see it changing anytime soon.
Dawn
[ 03-13-2009, 09:17 PM: Message edited by: donaldmn ]
Posted by mushroomman06 (Member # 13088) on :
I would say almost everyday. I make it a part of my day, bring about awareness and offering education to those who ask how I am or How have you been.
I am one of the lucky ones so far, I know I am only in remission but my over all condition is 98% to the good.
When I look back and see where I could be and meet those who have not made any head way and are still heading down hill, it makes the LYME epidimic a good part of my day.
Research
Awareness
Education
Activist
Posted by ugagal (Member # 18471) on :
I think of Lyme when:
I reach for my walker to take a step
I try to reach for something with my left hand and I'm quickly reminded that it is no longer responsive
I hear the schoolbus arrive to pick up the kids on my street and I'm reminded that this will be another day that I will be unable to go to school and spend the day doing what I love....teaching.
I lose my balance and fall down
I see my husband come home from a long day at work and still have to cook dinner, do laundry and help me shower
I get choked while eating or taking my meds
Yes, I guess a large part of everyday is spent thinking about this debilitating disease. However, I also spend ALOT of time dreaming about how things will be for me and my family once I've beaten Lyme and reclaimed my life!
Posted by feelfit (Member # 12770) on :
every second of everyday. The symptoms make me very aware and unable to think about much else.
It is natural when having a chronic disease for people to become consumed by it. Our world tends to become smaller and smaller.
A few can rise above. I have practiced mindfullness etc. and it is still very, very, diffficult to forget.
Feelfit
Posted by sutherngrl (Member # 16270) on :
Its hard not to when its with you everyday.
I think I think about it way too much but have a very hard time getting it out of my mind. Sometimes for a few minutes I can think about other things, but it doesn't last very long.
I am sick of thinking about it; and sick of living it!
Posted by tickssuck (Member # 15388) on :
Ditto what so many have said. Pretty hard not to think about it when you feel so screwed up all day/everyday. I long for the day it's on the back burner, being asymptomatic or symptoms so mild that you can forget about it. I have to believe that day will come or else I am certain I will never crawl out of the hell hole this disease can put you in...I plan on busting my way out....seems like that's later than sooner...but I will. TS
Posted by Kerryblue (Member # 4077) on :
Duh??How can you forget, pain,fatigue,nausea,24/7. Then herxing,meds, full time job to do smallest thing, reminds you.
I ave a mouth & every person 1 by 1 I give people quick overview. Most important word 1st month to save your life basically.
Even if on line with tele. cust.service,banks. If they will not do for us hope lecture on spreads.
Bush, could tell people about his Lyme & over yr. treatment? He went out worst, could make some brownie points with millions, instead of mouth to mouth. Amazing, how many out in Public or phone know & say heard how devastating Lyme is compared to few yrs. ago...Hmmmmmmmm??? Hugggggs, to all in need,Karen
Posted by Meg (Member # 22) on :
I used to wake up every morning with the dread of living under the lyme cloud. I dealt with it by coming here and reading and taking my abx day in and day out.
Now, after treatment the cloud is gone. When you start seeing those good days, your outlook will be so much better. Hang in there Lauren Posted by onthemend (Member # 13454) on :
Gosh, has someone's body (and/or mind) LET them forget about it for a even day since they've had it?
I consider myself to be well on the way back to good health, and I'm still waiting for a symptom-free day. Which then might give me a day of not thinking about LD. Feeling better DOES mean it doesn't always DOMINATE my thoughts & reality the way it used to.
otm
Posted by AmyPW8 (Member # 11504) on :
Every second of every minute of every hour, I think of it. And yes, I frequently get accused of being obsessed.
I suppose I am. My legs only work for a very short time when I go vertical, my back just as long, and in certain areas the time span is much shorter.
I also see Lyme in everyone. (I mean it too. EVERYONE) Sometimes it just makes me want to cry to think of the amount of people who are actually infected and don't know it.
The looks on people's faces when I do mention it just kills me. Some people truly believe what the IDSA says and know amount of research will change their minds...and they look at me crazy.
Yes, I do think about it every second of every minute of every hour...
Posted by bettyg (Member # 6147) on :
well, it looks like no one is exempt from the topic shown!
Posted by kim812 (Member # 17644) on :
I also spend days on the computer looking-reading-searching for any clue that will make me better..or for some other reason why I feel so bad.
I sometimes think the more I read the more confused I become. But at least I know I am not alone in this.
I personally don't know anyone who has been diagnosed with Lyme so no one understands what I am going through.
I will say though that a friend of mine had a bullseye rash last summer and because of me knew enough to get to a doctor and get some abx. (I never had the rash).
So yes...everyday until I fall asleep at night.
Posted by METALLlC BLUE (Member # 6628) on :
To be honest, I don't think it's "bad" to think about our situations the way we do.
I don't think it's bad to be angry, to be sad, to grieve, to obsess, to feel like giving up, to feel hopeless, powerless, depressed, negative or any other emotion that we commonly experience as a natural response to being disabled to such a point that simply existing is overwhelming and sometimes unbearable.
I think it's bad when other people tell us "not" to feel what we do by attempting to suppress or deny our experience.
It's healthy, to not pretend to be healthy, with Lyme Disease. Like Tincup said, 400lbs of amphibian is hard to ignore, and if you do manage to ignore it, you're the one who is nuts, not those who see it.
Posted by lymeparfait (Member # 14268) on :
I know I think about it constantly and sometimes laugh at myself as I see lyme in others. I try not to say it out loud!
My family notices my addiction to lymenet and and obsession with obtaining info on the next , best, and greatest treatment , and that's when it bothers me and makes me think I need to stop for awhile and do somethng unrelated to lyme and lyme research.
I do try to build other fun things into my day...but in reality, I do spend too much time lately, this winter on the computer!
My goal is to finally get in a place with treatment that I can feel that I am well enough to just live. Especially without drugs! That's my goal, drug / antibiotic free, and free from specific treatments. To just be able to pick up either the bionic, or add some supplements here and there to take care of symptoms when they arise. As this lyme and company seems to be with us all forever.
Don't want it to take over my life, but right now , I"m not ready to stop researching.
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