I want you to understand a few things about what lyme disease is like for me, and how I see it affecting our relationship:
When I don't want sex, it's not personal. It's not about you, I just don't want sex. Lyme disease messes with my hormone levels, and takes away my sex drive much of the time.
In addition, lyme makes me hypersensitive. Being touched often hurts. Sometimes feeling pleasure makes me too aware of the pain I try so hard to disassociate from. I know I'm over-reacting, so I try to respond with the appropriate smile anyway.
Lyme can make sex very uncomfortable, especially when it gets in the bladder and causes interstitial cystitis. Imagine wanting to have sex while you feel like you have to pee really bad, or in some cases like if you have just been kicked in the balls. Then imagine that on top of having the flu. I'm sorry, but it can be a stretch to want to go there.
With regards to sex, sometimes I really do want to make love. Sometimes I am being very loving to you by just showing up at all, even if I don't seem the least bit energetic.
Sometimes I show love to you by saying no to sex, so I don't do something that I can't feel good about, and then resent you for it later.
Even though I haven't been inspiring your zest for life lately, I really want some credit for what a good sport I am being most of the time under these dreadful circumstances. And by the way, I really appreciate what a good sport you are being most of the time, too.
I know how hard this is on you. I know it makes you feel like you are loosing out on life. Knowing this makes me want to cry. I hate to be the cause of your grief. Believe me, more than anything, I want to be the woman you fell in love with again.
Please don't loose faith that I will get well. I need you to keep that faith for me at the times when I feel the most hopeless.
And even though it feels like it is taking forever to both of us, I have it on good counsel that I am going to get through this and get back to life again. I need you to keep being patient and strong, and hang in there with me.
Sometimes it's hard to be compassionate, because I am keeping such a good and strong attitude while I am hurting so much. I'm really sorry about the times when I have been less than understanding, or even mean.
I need affection. It's really nice to just be held, without any expectations.
I need to know you love me, even when I look and feel unlovable. Can you find it within you to remember who I am underneath all my pain, and tell me you love me?
I know it is disheartening for a man when he doesn't feel like he can make his wife happy. Sorry honey, nothing much makes me happy right now, and it's not your fault.
You may not realize some of the things you do that show up as love for me. They include doing the dishes, putting away laundry, and helping fix dinner. When you call me from work to see how I'm doing, or ask if you can pick something up on the way home, it makes my day.
One of the things that drives me crazy is when I think I hear you saying that all I need to do to get better is have a better attitude. It's hard for me to hear you say that I should just get more exercise, smile more, and try to have more fun.
I have a disease, whether I want to or not. This is a serious antibiotic-resistant infection of the blood, organs, and central nervous system. I didn't bring this on myself, I got bit by a tick. I don't want it, and I'm doing everything I know how to do to get rid of it.
A good attitude definitely helps and boosts the immune system, but it's not going to kill all the bacteria that are doing the damage. That's why I take all these pills.
Believe me, I want to be able to use my body, feel good inside, play more, and have a great attitude.
I'm not sure you realize what an incredible attitude I'm having. Sometimes just getting up in the morning takes a force of will that you might not believe. As a matter of fact, the days when I am not a raving ***** are really quite an accomplishment on my part.
Please don't pick a fight with me when you see me exhausted and in pain. That look on my face is probably not anger at you, it's me just trying to make it through the next few minutes or hours until I can pass out from exhaustion.
Ask me if I'm angry. If I'm not, I'll tell you I'm not. If you insist I am, then I'm going to get angry.
Please don't pick fights just to try to get me emotionally engaged. If I'm checked out, I'm already on overload. Try a footrub if you just want to get my attention.
Please don't try to resolve difficult and painful issues between us after 9:00 at night. There is no cheese down that tunnel, and it is going to end very badly. Lets agree to love each other, and to bring up the issue the next day, if it still is an issue.
I need extra sleep to get well, like nine or ten hours a day. I'm not kidding, and I'm not just being lazy.
I consider myself lucky when I get six hours, between the pain that wakes me up, and having trouble getting back to sleep, and getting to bed too late tryig to accomplish things in my second wind that I sometimes get after 6:30.
Please, please, please, I'm begging you, let me sleep. Help me sleep, offer me sleep. Take the kids and the pets while I sleep. Take care of yourself and your own insommnia while I sleep, too, okay?
Please do treat me with love and respect at all times. Research shows that people get sick to the degree that their partner is demeaning to them. Abusive degrading behavior from a partner does not shame them into getting better, but actually depresses the immune system and keeps them sick.
I commit to treating you with love and respect at all times as well. I will make mistakes, and I am sorry in advance, but when I do I will try to apologise and get myself back under control as soon as possible. That's all I'm asking of you, too.
If you are feeling unable to control your frustration, then please leave the house until you can get yourself under control. Don't take it out on me or anyone else. We will both be better for it in the end.
I'm grateful to you for hanging in there with me. Who knew this is what we meant when we said, "in sickness and in health." I'm sure I didn't.
I know you really do have the choice of sticking this out with me or not. It means so much to me that you are still by my side.
I know it's a cliche, but when we get through this, we are both going to be much better, stronger, more compassionate people for it.
When it's over, we are going to have fun making up for lost time. But please do be with me now. Don't just go on hold waiting for me to get better.
Even if I don't always show my appreciation, it means so much to know you are there for me. This is scary as hell. As hard as this is to go through together, it would be so much harder alone!
Thanks for being my partner, and for listening. I love you.
[ 13. March 2008, 12:30 AM: Message edited by: bejoy ]
Posted by Geneal (Member # 10375) on :
What a touching and humorous letter.
I see my husband in that one as well, except he has Lyme and is not treating.
I'd have to add one thing to my letter....
Sleep.....I need sleep......
Please don't wake me up at 4:00 am in the morning because
You don't take your meds and have thought of a "better" way to while the hours away.
No offense, but I need sleep more than I need passion in order to get well.
On a personal note....you would think my husband would get it more as he has Lyme....
Not!
You hang in there Bejoy.....
My husband and I have survived many challenges to our marriage...
Big ones. Yet...here we are still plodding along.
Despite all the huge hurdles, the illness, Katrina, etc.
Hugs,
Geneal
Posted by AliG (Member # 9734) on :
Bejoy,
Thank you so much for posting this. You really explain the Lymed-wife perspective very well. This is such an awful disease for ALL who are effected by it. It takes so much away from our lives AND the lives of those who are close to us.
If only there was a way to put our lives "on hold" while we are ill and fighting to regain our health and then resume them once we are feeling well again. I think that would save a lot of stress, emotional pain & heartache for everyone.
Ali
Posted by hurtingramma (Member # 7770) on :
Wonderfully said, Bejoy. And Geneal - my sentiments exactly! Give me sleep!!
Posted by hubernacker (Member # 14548) on :
Bejoy,
You sure you are not my wife?
from a husbands perspective, thank you. You put it into words that I think we can understand.
Please be patient with us also...
We may not be Lymies, but we are living with one
Thanks again Posted by Cobweb (Member # 10053) on :
I very much admire your letter.
But I have to tell you, I eventually came to the conclusion that I was not going to get well, physically, or mentally, or spiritually if I stayed with my husband.
He just didn't get it, and it appeared that he didn't want to understand-there seemed to be a mental block.
We have separated, but that's okay for me. I do not have to live with the friction (pun intended) anymore.
Still I think that is a beautiful and well put letter.
Nice to know how the other half makes it work.
Cobby
Posted by Geneal (Member # 10375) on :
By the Grace of God Cobweb....
Trust me when I tell you there have been times that I am grateful
I don't know where the keys to the gun cabinet are.
Both my babies look and act just like their Daddy.
I couldn't ever get away from the friction ....even if I wanted to.
Still.....I chose this man. This former marine.
This friend, who despite needing lots of patience, is the one I love.
I couldn't imagine my life without him in it....although sleep looks
Really good sometimes.
By the Grace of God we go forward in life (seriously sleep deprived).
Hugs,
Geneal
Posted by bejoy (Member # 11129) on :
This letter was written mostly in retrospect. I hope that some of the things I learned how to say along the way will be helpful to someone.
Geneal and Gramma, I think I'll edit in the part about sleep!
AliG, I heard myself in your frustration, and thought of you when I was writing.
Hubernaker, I have a great deal of respect for you getting on lymenet, and finding some support and understanding. I think it would have helped my husband so much to find out he was not alone in all this.
Cobweb, I have a great deal of respect for you also, for respecting yourself enough to find peace. If my husband had not been able to hear my requests, honor them, and grow through this process, he would be finding out what child support, one night a week, and every other weekend is like.
I consider myself very fortunate that my husband had the strength and desire to hang in there, change, and grow. It came from inside him, not from something I did. It also came from me figuring out what I needed, and having the courage to insist on it like my life depended on it, because it did.
Posted by bettyg (Member # 6147) on :
joy, KUDOS for a well-thought letter to DH from a lymie!!
so good in fact, i'm adding it to my NEWBIE package. please post the link on TREEPATROL'S site also to be included next time he updates.
i'm going to put yours with the letters from LYMEDAD..letter to family/friends; and DAR'S TOY STORY plus the spoon theory.
one small typo....I'm greatful to you for hanging in there; 1st word didn't come out right. THIS LETTER IS A KEEPER!! *************************
Posted by mtree (Member # 14305) on :
great letter bejoy......
my husband did read it...... I didn't realy think to have him read it .....but glad he did......... everything you said was a big ditto for us.....
thank god we are doing it as a team........getting through...... in sickness and in health......
We can't wait for me to feel better to have a good ....loving, fun, careing marriage together........
we have to live our .....happily ever after.....now.........
thanks, mtree
Posted by bejoy (Member # 11129) on :
Thanks Betty and mtree. Edited as noted. Posted by DakotasMom01 (Member # 14141) on :
Beautiful!!
Thanks for sharing it!
Posted by kam (Member # 3410) on :
Very well written.
Posted by lymewreck36 (Member # 4395) on :
Dear Bejoy:
I had to cry a little when I read your letter. My husband and I have been together for 21 years of marriage now.
It's been hard. Different cultures, different religions, three lyme children, we are both lymies, and boy did we have some tough times.
Before my diagnosis, and early in my treatment, before my husband was lyme literate, we had the roughest times of all. Neither one of us understood the degree to which our problems were lyme related...my depression, my fatigue, lack of sex drive....crying fits....
His own lyme symptoms as he was also undiagnosed.
As I read your letter, my inner eye reviewed all the years, the struggles, and even though we all still have lyme, we have made it out the other side.
We are closer than ever, more in love than the day we married.
Your letter is beautifully written. It will help women and men on this forum for years to come.
Reading your letter was like reading something I had written, but don't remember writing.
God bless, Mary in Switzerland
Posted by Ann-OH (Member # 2020) on :
I thought your letter was excellent. One of the solutions to lost sleep we were able to do was to sleep in different rooms.
That way when I woke and couldn't go back to sleep, I could turn a light on and read or do a puzzle, or get an ice pack or whatever without waking my husband. We both got more rest and felt less guilty for disturbing the other person.
Ann - OH
Posted by map1131 (Member # 2022) on :
All I can say now is Thank You, bejoy. Thank you for writing this for me.
Pam
Posted by ginnyw (Member # 14493) on :
Joy, an incredibly accurate portrayal of our lives. THANK YOU for putting into words what I, and many others, could not.
I have printed your letter to help my husband and children understand.
God Bless You and Happy Easter, Ginny W.
Posted by AliG (Member # 9734) on :
Up for Laurj-
......because sometimes we ask our husbands to read on Lymenet, but that gets us nowhere.
Maybe this will help you convince him to read up on it.
Also, Stephen Harrod Buhner's book: Healing Lyme - Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections is an excellent resource for understanding what we are dealing with.
The first part of the book references a multitude of scientific studies and the conclusions of those studies.
Having struggled to actually read most of the studies myself, before I knew of the book, I can say that it would be a much EASIER way to gain an understanding, WITHOUT having to try to take up medical studies as a full-time "hobby".
My DH actually did start reading it and he had previously been able to get past a few lines of any study I printed & tried to get him to read.
Good luck with your DH, I hope he comes around!
Ali
[ 30. April 2008, 08:17 AM: Message edited by: AliG ]
Posted by KirstenS (Member # 15146) on :
Bejoy, Once again BRAVO!
You are an amazing woman, with so much inside that I want to give you a "standing ovation" for your words and feelings and depth.
Your words once again seem to be right where I am in my life. Thank you for expressing in ways that I want to. You truly help people and inspire!
I guess I am just alittle shy with expressing on this board. I will overcome that
I will let my husband read when I feel he will let it sink in the most.
Thank you again!
Posted by laura miller (Member # 12703) on :
Bejoy, I discovered your letter today,and it is written for us I think! What awesome timing to have read this today! THANK YOU THANK YOU!!!!! LAURA Posted by Day of the young (Member # 13493) on :
Bejoy,
I am so glad to have read your letter today. I am new here and am looking for support, my husband has Lyme.
He has told me these things over and over again but unfortunately in my stress of being the rock of the family I forget at times. Mainly when he is at is ``best''.
Hearing it from someone else (even in reverse) has helped me put into perspective.
That is why I am here to remind myself of what he goes through everyday.
Thanks
Posted by bejoy (Member # 11129) on :
Up for the 2009 lyme generation. I'm better, by the way, and my husband and I are enjoying life together now. Hoping you will be there soon. Loves to you all.
Posted by LymedOut (Member # 22351) on :
bejoy,
What a touching post. Thank you so much for bumping this up. My husband and I are going through something similiar except I'm mostly the mean one. Sometimes, I just can't help it though. The pain gets so bad.
Thanks again for sharing this with everyone and I'm so happy you are better.
Posted by Starfall1969 (Member # 17353) on :
Bejoy, thank you so much for posting this!
Many of the things you wrote are true for me as well.
My hubby just asked me again yesterday if I ever feel like making love anymore.
Sadly, no I really don't, and I'm afraid he takes it personally when it has nothing to do with him.
Like you wrote, sometimes I endure it for his sake, but I have to be honest and tell him I really didn't take any pleasure (I don't believe in "faking it").
I want to, and I pray that my desire will return, but I just don't know how to make it return.
We've also got a birth control issue, which I have posted about here.
We're at an impasse there because he rejects the forms of BC I have offered (condoms and natural family planning), and I am unable to do BC pills.
He wanted me to get my tubes tied, but my docs are all Catholic, so no BC is acceptable, except NFP.
I told him he could get fixed, but he won't.
So we're at an impasse till he changes his mind or I go through menopause, I guess...
Posted by sapphire101 (Member # 6638) on :
Great post Bejoy. It's so good to hear that you are better.
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