posted
I feel so crappy physically and mentally. I feel like I will never see any improvement.
I just keep feeling worse. I feel so alone even though I have 2 wonderful daughters and many friends that give me love and support.
My husband and I had a huge fight last night cause he is just not giving me ANYTHING i need right now.
The more miserable I feel the more he backs off.
Yesterday he told me to take myself to the emergency room as he left the house for the day.
I told him I want a divorce but I can't do this without him.
He is in such denial. I haven't had a good day in 10 months.
I know alot of you have been sick for much longer than me...
How do you do it??? What keeps you going??? I am already on lexapro,xanax for depression and anxiety.
I am only on oral zithromax since Nov. 07 and I had 10 IVIG treatments in the last 2 months for neuropathic pain. They have not done anything yet.
I feel so lost...
Today is my mom's 84th birthday and I feel so bad for her that her once HAPPY GO LUCKY daughter is so sick and miserable!!!
PLEASE tell me it will get better cause I do't know how much longer I can live like this!!
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
Laurie, I am so sorry you are so miserable. The relationship problems are not helping any, as you well know.
Do you think your husband still loves you? Does he just need help in understanding that you truly are ill?? Does he believe you are ill?
Men have a hard time handling illness whether it's their own or someone else's. YOu may have to lead him through this.
I didn't have children to handle while I was in treatment, so I can understand how you must be very overwhelmed. I was overwhelmed even without children.
It WILL get better as long as you have a good LLMD and are treating all coinfections.
It just takes a LONG time.
I'll pray for you and pray for angels and other helpers to assist you. I'll also pray that your husband's eyes will be opened and he will understand how hard this is for you.
laurie
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi Laurie, I understand what you are going through as I am going through the same stuff right now. My son is just incredible towards me. My husband is understanding but the other night I was in tears laying in bed due to having such a nasty headache from the flagyl which I had to stop taking. They can't help us and I have noticed with him, when I get really sick he leaves me alone. Men cannot deal with us being so ill and emotional. I cried for days and tears are not something most men know how to handle. What we need is a hug and loving words. Thoughts of divorce I feel are due to us feeling so alone because this disease makes you feel alone and so lifeless. I have been house ridden and basically couch ridden since july. I was at my breaking point this weekend wanting to stop treatment and give up. I was like this because it I was so sick. I have such wonderful support from family and friends but at times I feel so alone. What has helped me is joining this support group today. I am not alone and not insane! I have had lyme for 29 yrs! It's time I kick the little gross lyme's butt out of my body! I'm not letting this get me down, I will win and so will you!
Posts: 101 | From NJ | Registered: Apr 2008
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posted
Hi Kirsten- You are so right about men not understanding the emotional part!
My husband just thinks I can conduct my life the way i used to.
I am a pre-school teacher which I absolutely love-now I am on disability.
I can't do ANY of the things I LOVE to do except talk to my wonderful friends and some family on the phone:
work with my adorable preschoolers exercise read fiction knit needlepoint gardening shop! socialize with my friends when not in a fog and pain play with my dog ( can still force myself to do that sometimes) Most of all-be a mom to my 2 teenage daughters and a wife to my husband!
Thanks for your words of encouragement!!!!! I hope you are having an "Okay" day today. Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
Laurie, I completely understand how you feel and where you are at mentally. I have a 10 yr old son and he is very understanding and I also have a 23 yr old step son and a 18 yr old step daughter that live with us. I have always known I am not "normal" and have always told my husband that he married a reject to try and make light of me and my lack of normalcy! But for as long as I can remember I have pushed myself beyond what I should have, I have stopped pushing and I am trying to reajust my mind set. It is hard and I don't want to give in dammit but I have because I have no choice, which leads to my tears. Mostly tears of frustration and in some ways failure. I am very open about my situation because I was labled as a hypochondriac and a very lazy person growing up. One thing this disease has given me is complete compassion towards ones who are ill in depths that healthy people can not understand. Forms like these help you understand you are not alone. In a strange way it is comforting. Stay strong and laugh when you can! I do!
Posts: 101 | From NJ | Registered: Apr 2008
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posted
Lymetoo-Gayle-woops-that actually made me chuckle! Sorry and thanks for the support!
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
I was 10 when I got lyme while vacationing in nantucket. Thankfully my Father remembered these weird symptoms I had, the bullseye after returning and one morning I woke up crying with a swollen knee in which I couldn't remember hurting. There was always the low grade fever and horrible headaches. Let's see coming home from school I would go right to bed, that is where lazy came in. lol It wasn't until 2 Novembers ago when I got a flu shot that I was kind of able to function. But I would be sick every 4-6 weeks. Now that is where the hypochondriac came about. But, after the flu shot I went down hill and didn't get that burst of energy I would get every once in awhile. I noticed changes in my skin and body and the whites of my eyes were always yellow besides having dark circles from being exhausted. I looked horrible! I kept saying that I feel ugly from the inside and now it is pushing outwards. But, I have to say being on antibotics has been hell. Worse than anything I have felt in the past. It is very depressing because you feel as if this feeling is not going to end. This site is shedding a light for me. I am very lucky because I have lived a very healthy life, even though I am so ill. I must really have one good immune system! My body was shutting down hormonally and my bodies blood clot levels were so scary but it was desolving them or else I wouldn't be here right now. But my immune system was depleated and if I didn't find this Dr. something bad was going to happen because I could feel it from with in. Gut instinct!
Posts: 101 | From NJ | Registered: Apr 2008
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I think maybe what you and your husband are going through is ....your both in two different worlds right now........you are in the lyme world without choice........and he dosen't want to be there..who would...I guess thats deniel.....
that is a bad place to be in a marriage.....two differnet worlds....
I have had lyme for years........it has always challenged our marriage.....counceling on and off over the years has helped make us communicate better about this illness.....
.....and yes I think he is mourning the loss of his wife.....just like you are mourning the loss of your self.........its as though someone that you both loved has died....its a very sad time.....
......this part of Lyme disease angers me sooooooo much......the break up of marriages.....
...I understand the ....we love each other but don't like each other part that you said......
which has to be changed to we love each other but don't like this illness.....
when your husband and you are talking again.....
can you maybe say something to him like.....
...its still me in this ill body....somewhere I'm In here......I miss myslf...I miss you..I'm fighting as hard as I can to get better..... ......I know that you are hurting too......
one thing that my husband and I have always done......even before lyme.......is write each other..still do....not a lot but every now and then when things get a bit wacky..
..some how when you have to read something..you listen better....there is no interuptions....it has worked for us.....even writing good things....
if he is willing to save your marriage he should be willing to read what you have written..... .....maybe he will write back.....
I hope things get better......for your marriage......I KNOW things will get better with your lyme... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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we have a support group right here on long island..it is the lila group..we just met last month and we had a great time..let me know if you want to attend? eric
Posts: 593 | From long island ny | Registered: Apr 2006
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I'd like to say it gets better 'cuz I keep hoping it will! Some days are not so bad and others are borderline ok now ... I still am not the "fun loving, vivacious, intelligent woman" I once was ... but I try like hell!
I've been sick since 1985 ... in treatment since 1999 and while, I am out of bed more now than I was ... I'm kind of useless on a good day!
BUT ... I try very hard to keep positive even through the TEARS! And girl ... I do cry alot and sometimes it seems like for no reason! My lovely, wonderful used to be doc told me once it was due to inflammation in my brain ...
That helped. Made me feel not so crazy! I just had a week of the crying though ... it is really frustrating and embarrassing! I mainly try to let those around me know ... "hey, it's not you ... it's not really anything I can explain ... it's just me"!
You got some awesome responses in this thread and if you are remotely like me, just knowing you are not alone helps alot!
My husband didn't get it either. Even after he was diagnosed ... he remained in denial ... he would take the meds if I made him ... like a kid kind of!
We should have never married though and I was finally strong enough to admit it and deal with that! Nope ... not easy or recommended course of action but, if you find that there are no "pro's" in the "pro's and con's list" ... it's time!
I've been gone from lymenet for a while ... but, can truthfully say, it saved my life.
HUGS ... just know we are with you in spirit and no matter how horrid you feel or how sick you become ... YOU are a good woman and you do have WORTH.
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Laurie, lymenet is what got me through all that hopeless pain and waiting and hoping to get better,
and getting worse while getting better, and figuring out what to do next.
Sorry you need to be here, and glad you are here.
Do you need a new protocol, and/or a new LLMD?
-------------------- 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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laurie ![[Wink]](wink.gif)
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I know what he is going through. He needs a wakeup call as I did. See if you can get him to read this:![[Frown]](frown.gif)
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