quote:

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Originally posted by bejoy:
Sometimes I want credit for dealing with all this stuff and not complaining.

But if I never complain, then nobody knows what I'm dealing with so I can't get credit for it.

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You don't need "credit" for it ... your close family (hubby, kids) should see what you're going through, but you don't have to prove yourself to anyone!

I hate that I can't do things -- take care of my family, house, etc. I rely on others to do it all. Hubby is so overworked and I find a phone call to be too strenuous.

However, this disease has had a positive impact on my family.

The kids are more compassionate and independent. They ask me what they can do for me. They keep track of their own schedules because I can't. They have learned to clean and do laundry.

I have learned patience, how to let go, that I'm mortal, perseverance, that I can't do it all.

None of us take it all for granted anymore. There's just more to life than the physical, the material, etc.

Doing is not as important as being.

You are a beautiful woman. Don't forget that.

We can't help only having one topic of conversation ... we only do one thing ... let us have that force us to become better listeners! The most fun person at a party is always the one who listens to everyone else's stories!

Our melt-downs teach us to be humble.

There are lessons in all this. Our families care that we are sick ... but they don't care that we don't "do" they just care that we "are."
 

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Posted by dmbfan (Member # 11948) on :
 
yes, yes, yes, yes, yes, yes, and yes.

it sucks.

I try to remind myself that "no snowflake ever falls in the wrong place"

I also try to smile even when i don't wnat to.
"Sometimes your smile is the resulf or your joy. Sometimes its the reason for your joy."

So smile and try to be joy, bejoy!
 

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Posted by beach4so (Member # 3832) on :
 
I feel like you looked into my soul and wrote how I feel. Amazing how you put it all into words. I am showing the post to my husband it may help him understand the guilt/shame if feel for what I did to our family.

Your not alone,



Starr
 

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Posted by bejoy (Member # 11129) on :
 
I think the best way to maintain a powerful sense of shame is to try to hide it from everyone and never let it see the light of day.

Airing it out seems to make it seem not so real, or at least give it a little humor.

This one is exhausting to keep trying to hide.

It takes so much energy to try to pretend to be normal and high functioning so nobody can see the spirochetal dirty underbelly of my life (which they can't help but notice anyway.)

I've also noticed that when I try to hide anything for shame, other people pick up on it and take it very personally, and things get wierder than weird.

Other than grief, I think shame is the hardest emotion to deal with, and the hardest one to share.

I'm determined to not let this foolishness continue to take hold of my life. I'm going to clear it and replace it with pride, or at least humor.

But I'm still working on it and feeling slightly slimy tonight.
 

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Posted by Catsmeow (Member # 9485) on :
 
Bless your heart, honey. I wish I could hug you through the computer.

I felt like a burden to my husband ....then he died last year of cancer and I was no longer a burden. I was simply alone.

I'm 51 and don't have the slightest interest in intimacy. I figure it's linked to menopause.

Dear one, I have 4 cats. They adore me. They make me feel loved, cherished, trusted and needed. They don't care if I'm sick and on Social Security at this young age. They don't care that I'm on medicare. They simply curl up in my lap and purr.

People, on the other hand, can be very cruel and hurtful. I was treated horribly until the VA gave me the ELISA test and amazingly, it came back positive. Then I was finally recognized as "ill"....although few people understand this disease or even know how to spell it.

Since I'm a widow, I enjoy new friends I've made who are kind and supportive and my beloved animals.

If you find yourself in pain, find a compassionate and caring pain specialist who knows something about Lyme.

I did and he's working hard to minimize my misery.

As for a cure....I wish I could be more positive. It seems help got to me too late but many people get help in time to save themselves.
 

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Posted by pmerv (Member # 1504) on :
 
The hell with being ashamed of being sick! I say we should be proud of doing as much as we manage to do in spite of being sick! Whose servant are we, anyhow? We didn't ask for this!

I've always advocated letting highschoolers, for instance, put a priority on seeing friends if that is all they can manage in a day. Isn't that as important or more important than learning xyz? Do yourself the same favor. If you have limited energy, do at least one thing for yourself every day that you enjoy. Then you will have more to give to others in your life.

I learned a lesson once from the "Bowing Monks." We have a Buddhist monastery in town. Two young men decided to start in southern California and bow every few steps all the way to the monastery. It was hundreds of miles and weeks of walking. They only ate what people offered.

Why did they do it? Discipline, to learn something about the world, to give a message. Whatever. I thought - if these guys could spend time doing this, and really they did teach something to the people who met them, saw them, knew about them - then why am I obsessing about things I can't have or do?

Or look at someone like whatshisname the physicist with ALS who is so amazing. We might not have our bodies 100%, but everyone has something.

We are programmed to value ourselves based on what we produce. We don't value ourselves just for being! Maybe we need to rethink that.

Profound late at night and I am burned out, but there is food for thought. I'd be interested to hear what you think.
 

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Posted by sometimesdilly (Member # 9982) on :
 
Sorry, BeJoy.

your plate is full enough without that big heap of shame on it.

is it possible that you are herxing and that is why you're feeling down and down on yourself?

or is this bigger than a herx?

IMO, what you describe sounds like depression- if so, maybe you could take something to help put your brain chemistry back in order?

One immediate practical suggestion is to sit down for a few minutes in the morning to write a to-do list of one or two small very managable things that you haven't been able to get to but that need to be done. Then do them. Burdens lift.

I know it is very difficult, especially with kids, especially when you feel like you aren't doing enough for your family, but you really need to take time, even if it is only 10 or 15 minutes a day, to do whatever it is that will make feel peaceful or uplifted or happy.

One of my favorites is to lay down with my eyes closed, at least one cat nearby, and to listen to a CD of the sound of ocean waves. It is SOO relaxing, and it puts me in touch with a great many very happy memories of being at the beach.

please be kind to yourself.

hugs, dilly
 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by cave76:

I say we should be proud of doing as much as we manage to do in spite of being sick!

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Today I'm proud that I'm herxing and I still managed to take a sauna, get a shower, and fix myself lunch.

Pretty soon I'll be proud that I remembered to tell the kids to do a load of laundry.

I like this ... looking at the bright side and what our accomplishments are.
 

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Posted by Geneal (Member # 10375) on :
 
Dear Bejoy,

I never feel ashamed. Sometimes I miss my former self.

You know the one who was Super Mom, Super Sister, Super Wife, Super Daughter....

I also sometimes get frustrated with my inability to do certain things (especially with my children).

However, I am so blessed to be where I am.

I finally found out what was wrong with me.

Thanks to this site, found a LLMD.

Have countless supportive friends here.

Can do more than I could one year ago.

Have grown spiritually, mentally, and emotionally.

I may still be somewhat "physically retarded", but I am going to keep working on remission.

You deserve a medal and not a chair in the corner.

Sending you a group hug

Geneal
 

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Posted by disturbedme (Member # 12346) on :
 
Yes. I'm ashamed of being sick quite often.

I agree with just about everything you said.

I, too, don't feel beautiful.

I don't feel like a wife because I'm not always able to vacuum or to wash clothes or to make dinner. Sometimes I get lucky and am able to, but most of the time I can't.

My husband and I can't do a lot of things because this illness restricts me.

I don't have a sex drive either (I'm only 23, so this is just insane). Sometimes I have to force myself to make my husband happy in that way.

I feel like I'm being left out of life as well. If I wasn't ill I'd be doing things I wanted to do before I got ill.

I'm usually an emotional mess.

I feel terrible for things I am not able to do. My husband and I wanted a puppy, a beagle (my husband's favorite breed) so we got one. I found that I just couldn't keep up. I am just too sick to take care of all the needs a puppy has. We had to give him back to the owners, which really hurt my husband a LOT. I've actually never seen him cry so hard. It hurt me too. I miss the puppy but I also feel that it's my fault we had to give him up. And it's my fault we even got a puppy because I had been bugging my husband for a dog for the longest time. I guess I thought I'd be able to handle it. Now I know I can't.

If I was healthy, we'd still have that puppy and by now it would be house broken and probably crate trained. It was a beautiful puppy. It hurts that we named him, we went out and bought so much for him, we bought him a name tag all his own and in the end we had to give up all of that. It's just so sad and I still cry about this often. I hate myself for being so ill. If I wasn't, we'd still have a beautiful puppy.

And it hurts even more because I love animals. I have a very strong relationship with them, so this is extra hard not being able to have one.

And then I feel worried because if I couldn't take care of a puppy, there's no way I could take care of a baby. I want to have kids in at least five years, but am afraid I'll still be sick by then, which means I don't even know if I'd want to even try. I'm scared it would make me even sicker (which it most likely would). I couldn't deal with morning sickness, etc., and my lyme disease which makes me dizzy, lightheaded, just plain out ill.

I know how you feel. I haven't really been able to get over these feelings either. I don't know if I ever will. I've ruined so much for my husband.

I know how you feel exactly.
 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by disturbedme:
I don't feel like a wife because I'm not always able to vacuum or to wash clothes or to make dinner. Sometimes I get lucky and am able to, but most of the time I can't.

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I said something like this to my hubby ... you know what he said? I didn't marry you so you could keep my house clean.

It is hard ... but I'm sure (I hope) your hubby understands. We didn't choose this. Hang in there.
 

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Posted by bejoy (Member # 11129) on :
 
The funny thing is that the better I begin to feel, the more I recognize that I have lost over the years.

It may be depression, but this time it's not from a herx. I'm really getting better.

My head is clear, and my energy level is pretty good right now!

The recognition that I didn't have the power or control to make my life what I thought it was supposed to be is what hurts so much.

Then I sink into that shame about where I want to be, hope to be, am trying to be, but haven't made it yet.

I recognize that if I have shame, it means I am blaming myself.

If I blame myself, then I can still hold the illusion that I have control, and that if I can beat myself into submission, then I can fix the problem.

If I let go of the shame, then I have to deal with the reality that life can be arbitrary, and illness is out of my control.

Or else I have to be grateful for the growth, the gifts, and the love that has come out of this mess.

I'm going to whine about this a while longer. I'm not quite ready to give it up yet. Just ready to be ready.
 

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Posted by lymednva (Member # 9098) on :
 
I was ill throughout my 24 year marriage, throughout the lives of all my kids, who are now grown. I just didn't know it!

I never felt ashamed for not being able to do more. I knew in my heart I was doing the best job I could. I think that is the key to it all!

I didn't know why my energy seemed to be lower than all my friends, I just thought that was me, and part of being the mother of three active kids and the wife of a man who traveled a lot.

My kids are all grown now and are very kind and compassionate adults. I may have been ill, but I was able to impart my values to them.

I also taught them independence, even when I didn't know I was ill, or particularly feel that bad (I wasn't "working at the time).

As a teacher of young children I felt it was important to teach children to become as independent as possible as soon as they were ready.

My kids were picking out their own clothes and dressing themselves by the time they were three. By the time they started to school they knew how to pour a bowl of cereal and get juice to go with it.

I never fixed fancy breakfasts. I didn't feel they were necessary or particularly healthy, for that matter!

There is no reason for you to feel ashamed. You cannot control that you have Lyme. You can just do the best you can on the days you feel up to it. That may mean cuddling with your hubby, reading a book to your kids that they bring to you, simple things.

My weight has been all over the place during my adult life. I always lost my "baby" weight without a problem. Then in my mid-30's, after my thyroid problems began, I began to put on weight I couldn't' seem to get rid of. I lost some and then would regain it.

My marriage didn't end because of any of those things, although my ex would mention lack of sex. However, that was a much deeper rooted problem, and much of the problem was his.

Is there any way you can get into counseling to help you get over this. It doesn't need to be forever, just long enough for you to regain some of your confidence. Look for a counselor who has experience working with physically ill clients.

If you can't handle that, for whatever reason, you can get a lot of free counseling right here. Sometimes, though, having a few private sessions can be a lot of help.

Hang in there. You are a good person who helps a lot of people here on Lymenet. There is no reason for you to be ashamed!
 

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Posted by 3greatkids (Member # 3838) on :
 
Heck yeah...I'm w/ ya on that Cave!!!!!!

As long as you tell your family....I LOVE YOU...that is all that counts!

That is all they need....hugs and knowing they are loved!!!!!
 

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Posted by Aniek (Member # 5374) on :
 
I never feel ashamed, because I didn't do anything to feel ashamed of.

The tick bit me. The bacteria and possible parasites infected me. The doctors misdiagnosed me.

What did I do? I found Lymenet. I contacted my local support group and received references to doctors who specialized in Lyme. I took my health into my own hands, and I am working to make myself better.

The bad days, they aren't my fault. They are the tick's fault, the bacterias' fault, the parasites' fault and the bad doctors' fault.

The good days, those I take credit for. The good days exist because I took charge of my health. Because I'm taking my meds and supplements. Because I'm taking time to rest when I need to.

For anybody who is feeling ashamed, or feeling like they lost something, or feeling depressed, please consider seeing a psychologist. Illness causes incredible stress on the system. Emotional stress causes physical stress.

If you are stressed, then it is bad for your adrenal glands, for your immune system, and your ability to regulate pain. There are people who are trained in helping patients deal with the stress of chronic illness.

Think of it as doing yourself a favor. You are helping your body and mind fight off the illness.

Sweet dreams everybody.
 

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Posted by sixgoofykids (Member # 11141) on :
 
Bejoy, I get exactly what you are saying. When I was really sick, I wasn't fully aware of how things should be, but now that I'm getting better, I miss what I used to do and should be able to do.

Now that I'm aware, it bothers me more that I'm sick. When I was really sick, it was enough to just make it through a day, but now I know what I'm missing because I'm not 100%.

The only way we can "fix" the problem is do what's in our power to eat right, exercise when we can, detox, etc. until we get better. That's the only control we have over this.

Some days, I, too, feel like I should be stronger and be able to do things like cook dinner or the laundry. It's almost better when I'm having a REALLY bad day than when I'm just having a bad day ... if that makes sense.
 

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Posted by sometimesdilly (Member # 9982) on :
 
BeJoy and six-Goofies--

now i get it.

its amazing how many stages there are of dealing with having a chronic illness like Lyme.

sounds like you're both in the same place- getting better, seeing what you've lost, but not yet able to get it back. That's bittersweet.

I still think you're being pretty hard on yourself, BeJoy, but man on man it seems right and appropriate to grieve for your losses.

here's hoping the next step is to feel better and better about feeling better. congratulations on the getting better- i know you worked hard to get this far.

hugs, dilly
 

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Posted by map1131 (Member # 2022) on :
 
It has reminded me of the grieving process and steps that one goes through during the lose of a loved one. It took me a long time to realize that losing a way of life and career was not shameful.

*$It happens to good people.

Pam
 

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Posted by bejoy (Member # 11129) on :
 
Thanks you guys.

Yes, that really is it.

When I was just surviving I didn't care much about what I was doing or how I looked.

I just got through the day somehow.

Now that I'm getting so much better it makes me mad not to be all better.

When people invite me to go on a hike or some other strenuoous activity, I have to decline, and I don't like it.

Friends (mostly my husband's) and neighbors are a bunch of fit and healthy (not to mention double income free and childless)people.

I don't get to point out that I appear to be a fat,lazy, boring housewife because I'm fighting for my life.

Not to mention that most of them coincidently happen to be ducks or ducks assistants, so they "know all about lyme disease, already!"

I am fortunate to have many great resources here, including the professional kind, so I am working on this with someone.

I just got stuck here and really comitted to feeling bad.

I figured I'd take it to you guys because you'd understand, and maybe my process might support someone else too.

[ 21. September 2007, 12:38 PM: Message edited by: bejoy ]
 

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Posted by Cobweb (Member # 10053) on :
 
Yesterday was pretty much of a bummer for me, ironicaly because of uncontrollable laughter.

I was in our LLMD's office at an appointment with my daughter, and I burst out laughing uncontrollably-and it went on and on.

All conversation stopped-except my laughing. Laughing so hard it was difficult to catch my breath, and my nose and eys started running.

The comments I could hear were:

Doctor:
1. all my years of practice and I have never seen this.
2.(to my daughter)does this happen often ?

Daughter:
3. yes

Dr.
4. when nothing funny has happened?

Daughter:
5. I have to be the mother sometimes.(this comment hurt the most-knowing that she feels this way )

Dr. leaves the room to go get the Nurse.

Nurse: did this happen before you were diagnosed with lyme disease?

Me: gasping out a response: No

Daughter: sometimes it happens when she's driving.

Nurse escorts me out of the room to splash cold water on my face and try to settle down.
I settled down -right into a nap in the waiting room.

When I woke up I felt like crying, but I kept my mouth shut and put on my dark glasses. I was so afraid I was literally going to be escorted to the "Funny Farm".

I didn't want to admit to the doctor that I had forgotten to take my seizure meds the night before, and that I was in such a rush in the morning to get my daughter to her appointment that I hadn't taken morning meds either.

I've felt exhausted, depressed, embarrassed and ashamed that I cannot control my actions and reactions at times.

It did give my daughter and the doctor an opportunity to talk about what it's like to have a lymed parent. The doctor was able to explain more of the effects of Lyme Brain.

I was hoping this would translate into support and understanding, but alas, my teenager interpreted it as confirmation that I was crazy. I told her just because I did crazy stuff at times it did not mean she could write me off as a nut case.

Carol
ps- I thank Bejoy for starting this thread.
 

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Posted by mickip (Member # 11663) on :
 
Wow, Bejoy ... you said it for all of us, I think! Thanks! Michelle
 

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Posted by hshbmom (Member # 9478) on :
 
I have a different take on this question.

I don't feel ashamed that I'm sick.

But...my husband tries to make me feel ashamed "for getting everybody sick."

Right! If it hadn't been for me he wouldn't have been diagnosed. I recognized his symptoms...he was CDC positive on IgM Western blot.

I let his comments roll off my back...I don't need his negativity or verbal abuse.

I think he's reacting like a man...men just want to fix things. He can't fix this problem, so he feels he must place the blame on someone.
 

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Posted by sometimesdilly (Member # 9982) on :
 
hsbmom-

your husband is lucky he is married to you instead of to me.

if my husband said anything remotely like that to me, forget the dog house- he'd be sleeping in the cat's litter box for a month.

wanting to fix things and not being able to does NOT justify being abusive.

hope his words come from being Lymed- even then, IMO, he owes you an apology.

dilly
 

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Posted by bejoy (Member # 11129) on :
 
Carol, wow, what a way to have a seizure!

Don't worry, every teenager is convinced that their parents are absoluteley looney. At least you can get better. Most moms have no hope.

I guess what I've come to in this discussion is that there are certainly many places where I am imperfect, many of them due to lyme.

I'll always be imperfect, ill or well.

I can choose to hang out in shame over my imperfections, or I can choose to hang out with those I love in a space of love and joy.

Clearly, when I'm down on myself, I make room for people to judge me and have negative opinions about me.

I also become very reactive to those opinions, and spiral downward.

I've decided that I'm not going to try to shove my shame underground again, but I am going to limit my shame time to a few minutes a day.

I'll save it for things like when my new comfy jeans don't fit, and when people stop by and get to see the dirty underwear on the living room floor.

Other than that, I'm going to stay in a space of loving myself and loving others.

I'm not going to ask my husband idiotic questions like, "do you still love me even though I'm fat, ugly, and stupid?"

I'm gong to love him no matter what, and just ask for and insist on unconditional loving support from him, and from other people too.

Even those who look like their lives are working out well are just wandering around on the planet silently asking, "do you like me," and "do I fit in here?" anyway.

Back to allowing this illness make me a more compassionate person.

Back to my life lessons, that I don't get to be in control of everything, I only get to change the things I can, and that doing things doesn't bring peace.

Peace is what brings peace.
 

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Posted by Tracy9 (Member # 7521) on :
 
Bejoy,
And everyone else,
THANK YOU so much for articulating exactly how I feel. WOW! You aren't depressed, you have Lyme Disease, and you very eloquently described precisely what many of us couldn't put our fingers on, let alone put into words.

I for one have been helped IMMENSELY by your post. It made me feel much more normal. It has also given me something very tangible and printable to show so many people in my life just how I really feel!

Thank you again. Your posts in this thread are so incredibly realistic yet inspirational. I love the way you look at things. I for one think you should be a therapist when you are better. And I'll tell you what...it takes one to know one!!!!!

Yup, I can add to your list how ashamed I feel that people actually come to ME with thier problems and think I have anything to offer!!!!

Thanks again. You're just the type of person I'd love to hang out with, and if we didn't feel good, we could watch movies and eat lowfat popcorn together!!!!
 

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Posted by treepatrol (Member # 4117) on :
 
Not ashamed of being sick but guilt for not being upto everything like I was before.
Normal tasks or projects that I start and take forever to finish.
 

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Posted by Tamera (Member # 13309) on :
 
I'm new here, and I just received the lab supplies to be tested by Igenex. I'm taking it to my doctor today to be drawn and sent. I've had a multitude of symptoms for years, but all testing has been "normal". My doctor just keeps asking me what to do next. I'm a registered nurse and I finally made the decision to go on medical leave this last week. I no longer feel safe to practice. I was a house supervisor and responsible for even mixing medications after hours when the pharmacist was gone. My mental status comes and goes these days and I will not take the chance of harming anyone. A physician friend of mine in Florida (I now live in Alaska) mentioned the possibility of lyme, and when I looked up the symptoms, it seemed to fit. Maybe finally I will find an answer. Right now my poor husband is having to do almost everything for me. I had surgery on my right foot on 9/6 and 5 days before that I my left leg gave out and I severely sprained my left ankle. I can bearly move around on crutches with my left foot to the bathroom. I crawl up our stairs when I have to go to a doctors appointment. My husband brings me meals upstairs. I try to watch movies but the double vision makes it difficult right now. I have trouble remember what I read at times. Taking away my ability to practice as a nurse is taking away my life. I have some good days, but not being able to walk right now even hinders those days. I feel useless, overweight, and a true burden to my husband. I was the only one working and my job is our insurance as well. If I can't find an answer by November 28th, (when my leave will end) I will lose my insurance. I can understand how you feel, because I feel the same and I don't even have a diagnosis. I am glad I found this site though, reading everyone's postings gives me some support and encouragement. Thanks to all who read these words...it feels good just to share. I have no family, parents are deceased, and my children are grown and in Florida and I don't tell them everything as not to worry them. My husband is the only person who really knows what is going on with me. I'm afraid a lot and tired of being "normal" on all the tests and having the doctor feel I am just depressed and stressed. I know there is something wrong with me.
 

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Posted by bejoy (Member # 11129) on :
 
Hi Tamera,

Welcome! Congratulations, it sounds like you are on to something!

You sure sound lymie to me! Remember, even if your test looks negative, many people still treat for lyme and get better.

You are in good company here. Let us know how the IGX test goes.
 

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Posted by bejoy (Member # 11129) on :
 
Internal dialogue:

ME: This food sucks. I used to be a good cook.

ALTEREGO: Listen, you put three different kinds of food on the table all at one time, and you managed to herd the whole family to the chuck wagon. You've got lyme. You'll be a good cook again eventually.

ME: This floor is disgusting. How can someone with such a dirty floor be self-respecting.

ALTEREGO: Your floor was dirty even when you were well. You used to have more self-respect than to be a neurotic house keeper.

ME: This place is so messy. It's gross. I can't stand it. I want to jump out of my skin. And besides, what must people think of me.

ALTEREGO: You have lyme disease. Things get this way. When you are better things will be tidier. Until then, this is what a lyme house looks like. Got it?

ME: You used to be a highly motivated, intelligent, well-educated professional. What a waste! What happened to you?

ALTEREGO: In case you forgot, several ticks bit you and left you with tick soup. You are one of the lucky ones, because you have a treatable illness, instead of living with an incurable diagnosis of MS, Parkinson's, fibromyalgia, rheumatoid or dementia.

ME: Right, I have lyme disease. I have a disease. Things didn't get this way because I'm lazy or because I don't care. In fact things are this good because I'm so brave and determined and I try so hard.

This isn't what I chose, but here I am smack in the middle of it. I'm just going to have to be amazing in how I deal with it. Just watch me.

ALTEREGO: Yeah, that's the ticket. And remember what The Four Agreements says, "Always do your best." Not better than your best, just your best.
 

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Posted by sick (Member # 9143) on :
 
bejoy
You could be my twin you said it so well. The only difference is I am NOT mildly boring, or ineffective or overweight. I wish I was. I passed all of that about a year ago so now I tend to hide out at home so no one will see how over weight and boring I have gotten to be.

I honestly have considered doing surgery or something to take off some of this weight.

And yes, I do feel like I am just a dead weight to the world. As I tell my kids many times I feel as though I am just taking up space.

sick
 

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Posted by bejoy (Member # 11129) on :
 
No One Is To Blame - Howard Johnson

You can look at the menu,
but you just can't eat
You can feel the cushion, but you can't have a seat
You can dip your foot in the pool,
but you can't have a swim
You can feel the punishment,
but you can't commit the sin

CHORUS:
And you want her, and she wants you
We want everyone
And you want her and she wants you
No one, no one, no one ever is to blame

You can build a mansion,
but you just can't live in it
You're the fastest runner but you're not allowed to win
Some break the rules,
and let you cut the cost
The insecurity is the thing that won't get lost

CHORUS

You can see the summit but you can't reach it
It's the last piece of the puzzle but you just can't make it fit
Doctor says you're cured but you still feel the pain
Aspirations in the clouds but your hopes go down the drain

CHORUS

No one ever is to blame
No one ever is to blame


At times, Howard speaks to my condition.
 

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Posted by treepatrol (Member # 4117) on :
 

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Originally posted by Tamera:
I'm new here, and I just received the lab supplies to be tested by Igenex. I'm taking it to my doctor today to be drawn and sent. I've had a multitude of symptoms for years, but all testing has been "normal". My doctor just keeps asking me what to do next. I'm a registered nurse and I finally made the decision to go on medical leave this last week. I no longer feel safe to practice. I was a house supervisor and responsible for even mixing medications after hours when the pharmacist was gone. My mental status comes and goes these days and I will not take the chance of harming anyone. A physician friend of mine in Florida (I now live in Alaska) mentioned the possibility of lyme, and when I looked up the symptoms, it seemed to fit. Maybe finally I will find an answer. Right now my poor husband is having to do almost everything for me. I had surgery on my right foot on 9/6 and 5 days before that I my left leg gave out and I severely sprained my left ankle. I can bearly move around on crutches with my left foot to the bathroom. I crawl up our stairs when I have to go to a doctors appointment. My husband brings me meals upstairs. I try to watch movies but the double vision makes it difficult right now. I have trouble remember what I read at times. Taking away my ability to practice as a nurse is taking away my life. I have some good days, but not being able to walk right now even hinders those days. I feel useless, overweight, and a true burden to my husband. I was the only one working and my job is our insurance as well. If I can't find an answer by November 28th, (when my leave will end) I will lose my insurance. I can understand how you feel, because I feel the same and I don't even have a diagnosis. I am glad I found this site though, reading everyone's postings gives me some support and encouragement. Thanks to all who read these words...it feels good just to share. I have no family, parents are deceased, and my children are grown and in Florida and I don't tell them everything as not to worry them. My husband is the only person who really knows what is going on with me. I'm afraid a lot and tired of being "normal" on all the tests and having the doctor feel I am just depressed and stressed. I know there is something wrong with me.

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You said I've had a multitude of symptoms for years you need to go on antibiotics a week or so before your test this way you will kill spirochetes and set free any antigens & antibodies that will help with your test get a 3 nday urine and a western Blot theyll try and make you get a elisa deffinatly a worthless test.
 

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Posted by heiwalove (Member # 6467) on :
 
wanted to bring this back up to the top because i'm currently really struggling with the guilt issue.

i'm well enough to function much of the time, but still too sick to hold a full-time job, and i often have to change or cancel plans with friends last minute because i'm herxing or just having a bad lyme day. i try not to let it, but in truth it makes me feel awful, like i'm not a worthy friend/lover/member of society.

so thanks, bejoy, for starting this thread. <3
 

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Posted by 1tickedlady (Member # 14907) on :
 
Wow you must be in myhead and in my life. I feel like such a burden to my family. I feel pretty pointless these days. I know I'm doing the best i can and I know I love my children. I also keep telling myself this will get better. Thanks so much for taking the time to put into words what I have been not wanting to say but is the truth. We will get through this together! Please keep posting and I'll be in here with you and so many others. Every day that we get a little something done for ourselves is a day closer to being our old selves.

Take care!
 

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Posted by GenaD (Member # 11988) on :
 
You guys aren't alone!

I recently was living in Florida, got divorced, and moved back to Long Island. I can't work, so I'm living with my aunt and uncle. My aunt understands the situation, but my uncle hit me with, "you look so good...like you're not really sick." Ugh.

My ex-husband has been late on his alimony, which is what I live on, so I was talking to the attorney about taking him to court when my uncle said, "You shouldn't rely so much on the alimony. You should be looking to work again."

I wanted to cry! If only it were that simple! If I could work, believe me--I'd be working! I felt like a burden on my husband, and now at 35 I feel like a burden to my family. I miss independence sooo much!!

I'm so thankful for Lymenet, because only other "Lymed people" seem to understand all we go through--even though we "look so healthy!"
 

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Posted by Tracy9 (Member # 7521) on :
 
OH BEJOY,
I hope you do us all a service and write a book. It would be a gem, a bestseller. YOu got the gift, girl.


 

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Posted by Curiouser (Member # 14128) on :
 
I'm not ashamed. I'm angry!

I'm angry at the idiot doctors who were so patronizing I halfway expected them to pat me on the head and give me a cookie.

I wouldn't have minded the cookie.

I have an entire rant about idiot doctors, but I'll spare you for now.

I'm angry at this disease for making me feel like this.

I'm angry at myself for allowing parts of my life and my "self" to be slowly stripped away.

I haven't figured out how to get rid of the anger.

In the meantime, I've been using it.

It's given me the strength to keep moving on.

It's given me the strength to keep looking for an answer.

I hope it continues to be a source of strength. It's all I have left anymore.
 

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Posted by Clarissa (Member # 4715) on :
 
I'll never forget my LLMD telling me 6-years ago that I had Lyme Disease.

He said, "Based on your mental and physical history, I think you've been struggling with this disease since you were a little tike."

Hot tears of relief ran down my face. I wasn't a hypochondriac and I wasn't crazy. I said,
"I just always thought that I was a very weak person."

He said, "Quite the opposite. Only a very strong person, a survivor, could lead a productive life for 33-years with this disease in their body."

That is the memory I return to when I feel ALL of the same feelings you have so eloquently listed in this thread.

Please try and remember these words because they apply to every single one of us.

We are strong and we are fighters.

Blessings to all,
 

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Posted by GenaD (Member # 11988) on :
 
Clarissa,

I had the same experience as you--I was finally told last year at 34 by an llmd that I was "a very sick girl" and probably had been since I was a toddler. I cried tears of relief too, just knowing I wasn't just physically weak or a hypochondriac!

It gets hard to remember how strong we really are when we aren't able to do the simple things others can do, or when my uncle implies that I'm lying about my condition since I look healthy and I'm not crying all the time.

But the truth is, we have to be strong to have lived with this pain for so long and to be still fighting!

I like to think there is a reason for everything--and there has to be a reason that we are dealing with TBIs and not other people. I think it takes STRONG people to fight for so long. WE are the ones who will keep standing up for ourselves and each other, and who will keep looking for the cure.

Hopefully years from now, Lyme will be recognized and understood, and people won't be suffering like we are now. WE will have been the ones who struggled and fought! We are very strong people!!
 

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Posted by mtree (Member # 14305) on :
 
WOW..........

thank you whoever bumped this up......
and thank you Bejoy for starting this....

...and thank you all for sharing all that you've been through.....
even though I'm sorry for all that you have been through... ....I am thankful that I am not alone....

I am just getting to the point where I'm off the couch more than on......my mind wants to do....but my body is still struggling with energy, stamina....and strength.....neuro stuff is getting better....speech is still a challenge...

....the shame comes in for me when I'm at this point....just a tiny bit into the real world...where I truly feel I don't belong and out with others that don't know me..or even some that do...don't know what I've been through ..and still going through..

....that I have had lyme for 20 years...its robbed me of my intellegence.....my skills.....and its not fair that I have to be judged on what they see..

...I want to put a sign on me that says this isn't really me....this is the result of chronic Lyme disease........not for sympanthy
like I have to give them an explanation of why I am the way I am.....I don't talk much...engage in the conversation...don't work....or go to school...look like death......its not fair that I have to stand there and feel like an idiot......

I know it will get better...I was in remission for years.....but what it has taken from me..in those past years..I can't get back....I lost out on...learning....and growing....and being the adult I would have liked to have been.....

..my life stopped while I was sick......but the world kept going .....

now that I am no longer in remission..and the lyme came back soooooo visously.....I know now that I can't let my life stop .....wait to feel good......this is who I am...I am somewhere in this body and I not only have to fight to be healthy but I have to fight to continue to have a life....

.....the shame comes with allowing myself to let people get to me....they make me feel shameful......and that I don't belong.....I know I need to stand up more for myself...not be ashamed of myself......I know how hard and how strong I am....

..if anyone walked in any of our shoes...they would be absolutly shocked at what we go through..they would be the ones embarrased at how unkind they have been to us.......I myself am shocked at times....how can we be so so very sick....and walk this earth ..all of us....we are the silent sufferers....and there are so many of us....we even get our support in silence...

You give me strength to get back into that hurtful, ingnorant world...and not be ashamed.....I have all of you now........I didn't have that years ago....

mtree
 

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Posted by carly (Member # 14810) on :
 
Wow, it's like you're all in my brain!!

Thinking my thoughts, feeling my feelings.

Thanks to all who contributed to this thread.

You've validated my feelings.

carly
 

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Posted by heiwalove (Member # 6467) on :
 
clarissa, your post made me cry (in a good way, don't worry). thank you.


 

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Posted by njlymemom (Member # 15088) on :
 
wow, these 2 pages have been theraputic...

someone mentioned the grieving process...that is how i feel over and over again ......the grief of feeling ill...helpless, alone,

then the grief and anger that comes when the tide turns and it is "catch up time".....feeling somewhat productive....knowing you are doing all you can do....

then when that (what one of my llmd's has called) honeymoom period ends and you feel like your sliding out of control....

grief has many stages.....but for some of us our grief does not end....like a bad dream played over and over....
 

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