posted
Hi. I've been at this lyme battle for 4 years now. In this time, I got divorced and that was a good thing cuz my ex was super icky. BUT NOW....
I feel like a healthy person cannot possibly handle me. I know I should't decide for someone else what they can or not handle. I have so much fear.
On a 'good day' I got optimistic and signed up for eHarmony. It was at the start of beginning to detox of heavy metals. I didn't know how bad things were gonna get and I've lost most of the little functionality I had.
So against all odds I found someone online who is so amazing but it has quickly dredged up a whole kettle of fish for me. I've only been emailing with the person for 2 weeks, he lives 3 hours away, and he knows about the lyme and metals and he didn't flinch. But I don't think he has a clue what it all entails even though he's an environmental toxicologist.
Anyway, I feel like I've awoken from a very nice 2 week fantasy. I guess that happens a lot with online dating in general--fantasy--that's why people send Nigerian princes thousands of dollars.
I'm having all those icky thoughts like my body is ruined and I'm disqualified from having a romantic relationship, among many of life's other pleasures. I know it's way too soon to know where this thing is going even if I were well. But I feel like I need some hope.
I stay upbeat a lot of the time through some pretty brutal stuff. This is just really getting at me.
Any positive love stories for lymies?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
There are positives to being with another lyme literate person
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I am having a heck of a time maintaining friendships and a relationship I've been in for 5 years while lyme infected.
Healthy, non lyme literate folks just don't get it. And I don't know about the other folks here, but I don't have the energy to educate those in my life.
I can't imagine having the energy to get dolled up for a date, or to remember what someone told me beyond 5 minutes.
If you have the energy-do it! Life is too short!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I don't.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I Dont either. Oh sure sympathy in rhe beginning but it turns to contempt and later even. Cruelty.
Anything ever happened and hell would freeze over. Before I got in another relationship. Period...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
How brave of you to venture into online dating! Be proud.
My husband and I were both undiagnosed when we met. After dating many healthy men, it was an enormous relief to relax with someone who fully understood my bizarre health odyssey.
And we had most of the same food intolerances! So convenient!
We married in 2002 and started Lyme treatment in 2008.
We are still together and still treating Lyme. Marriage and health continue to improve.
If I went back to dating (the horror!), I would work on being much more comfortable with my illness. I was always honest about it, but didn't always let it "show."
With a do-over, I would just be me. If I can't leave the house that day, I can't leave the house. It's part of my illness.
If I can only eat five foods, I can only eat five foods. It's part of my illness.
If I forget your name, I forget your name. It's part of my illness.
Like that. I would divulge more. Nobody wants to dwell on their health and bore people, or come across as a "victim" (people can be so cruel and quick to judge), but chronic illness is a HUGE part of our lives.
It will be a huge part of our partners' lives. And that's fine. There is nothing wrong with having a chronic illness. Or any disability. We are perfectly normal and complete people. We just have some stuff to manage.
Be honest with your new guy. Try Facetime or Skype. Be honest about your limitations. Be excited about your progress. Be nervous about opening up and sharing. Laugh and be who you are.
And if you get ANY guff about Lyme, drop that dude like a hot potato!! Or just call me and I will come over and punch that idiot right in the face. Not what you need in your life.
I think you should be super choosy this time!! Get YOUR needs met!!!
There are some sweet blogs about Lyme/CFS patients with healthy partners. Great examples of spouses facing reality together and supporting each other.
I'll see if I can find them. They will put you in the right headspace to get a good partner.
It would be a shame to short circuit the possibility of a relationship with a good person.
I have a positive love story for you. I met my husband, R, online 4 years ago. He has late-stage neuro Lyme & co. I don't. I wasn't Lyme literate. He lived 2 hrs away.
He didn't know he had Lyme. He'd had a number of scary episodes over 3 years that doctors had (of course!) scoffed at. He believed them.
For our 3rd date, I drove up to NH to keep an eye on him when his heart rate and BP got scarily low. For our 4th date, I drove him to the ER. I had to beg him not to crack jokes in case we got thrown out of the ER for laughing too much.
Two years and dozens of specialists, tests, and several more ER visits later, he was diagnosed with Lyme. Commuting for 3.5 years was a major pain, especially when he couldn't drive with his neuro symptoms. And it was scary to be at the other end of the phone when he was alone with chest pains + irregular heartbeat.
But I knew after 30 mins that I wanted to be with him. And wanted to be more like him. I thought I was getting cranky and crabby in my old age. He's open and generous. I hate his Lyme disease, but love him.
Puppy, I thought my body was ruined too. I didn't know whether I could have a romantic relationship either. Even when we're not sick, our society doesn't exactly give women good messages about ourselves and our bodies.
Evidently this man finds you interesting and attractive. Tell your self-doubts to keep their opinions to themselves!
I think a person can have a predisposition for Lyme literacy, even if they don't know much yet. This guy should hopefully understand at least some of the science and some of the politics, given his job.
I don't know whether he'll work out OK. But whether he has the sense to know this or not, he's the lucky one, actually, to meet a Lyme warrior.
Posts: 431 | From New England | Registered: Dec 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Love the positive posts!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sickpup, I think you need one of these!
You are not your illness.
Learning to battle Lyme and company means you must be one formidable person.
Coming out of a bad marriage takes courage.
In my book you sound AWESOME!!!
The ravages of battle don't make us less lovable, it just adds to our character.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ohhh...nice to read this. anthro...we've been talking about ME and i had no idea about your story!
at one point during "dating" i looked on line for other "disabled" ppl...but that didnt work out...when you label yourself disabled...i guess it is like being lymie...being lyme.
and that is not us. each one of us is way more than the disease
so i dont really know the answer. i always thought i wanted a partner and too often found someone who wanted a mom or a caregiver...
now...i cant imagine finding someone because i am finally putting me first...and there is a lot of work to that.
i guess i shouldnt give up thos. i dont know if i will actively look...but the stories here are making me not be so closed to the possibility
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
thank you so much for the above positivity!
it's such a tough mind game and I don't want to ruin someone's life.
i think also I can never really accept that this is a chronic condition. It's that thing of wishing you could go back to the way you were before, but of course that's not possible.
Almost all the people I know well who have lyme have boyfriends or husbands but the illness arrived with the relationship already in progress.
So for that reason it's nice to hear that some people are willing to get into it with someone who is already sick. But I think that takes a very special kind of person, especially is today's culture.
Anthropologista you are VERY amazing and I love your post. I wish you all the best!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
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posted
"i think also I can never really accept that this is a chronic condition."
even chicken pox is a chronic condition...body trauma brings on shingles...
living with controlled lyme is not such a bad thing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
We all have different experiences. I just know I would never put myself in that position again. Please dont judge all men by me. I would just prefer being alone with the peace and quiet.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I think about dating a lot,but with my natural killer cells at only 8 I would pick up any flu or colds she had and get pnumonia again.
How could you be with someone when you couldent be near them if they catch a cold???
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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posted
Kayak--bad gender issues! Sounds as if Lyme can intensify them.
Randibear--You may have Lyme, but the person who was callous and cruel is a REALLY sick human being.
SO much better to be alone than in a negative relationship. Being alone so that you can put yourself first and take care of your needs is healthy and strengthening.
Sickpup--not amazing, just lucky. You will absolutely, positively not ruin somebody's life.
What Boxermom says is so true: "It will be a huge part of our partners' lives. And that's fine. There is nothing wrong with having a chronic illness. Or any disability. We are perfectly normal and complete people. We just have some stuff to manage."
Posts: 431 | From New England | Registered: Dec 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
maddog...i know. i should have thought of that. i tend to stay away from groups. run away as soon as i hear a cough or a sneeze. i dont seem to catch that many bugs...but i think it is because i isolate a lot. when ever i am forced into a wedding or holiday with a group i almost always end up with something.
if it happens with me its gonna have to sneak up on me cuz i have no energy to put into it. it would have to be something that just happened with someone it was easy to be comfortable with.
i just dnt know where i would start to actually go lookiing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I met the man I married before I knew I had Lyme. I did have RSD (severe nerve pain) at the time, but he accepted me as I was then just fine. He had health issues, too.
It was love at first sight. Mutual friends of ours got us together, and I'm so thankful.
He has been one of my biggest supporters, when all the doctors were telling me I was a nutcase. And even more so now, with me so ill and such. He makes a great nurse, too It has truly been a blessing to be married.
Don't give up on the possibility of meeting someone and having a positive relationship...you never know what wonderful things may happen.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
puppy. I met my husband before being dx'd, but he did see me have horrible what was then thought to be finromyalgia flairs and he married me anyway.
I think one of the things that I learned when I was at my worst was not to get jealous of him if he wanted to have fun, but I couldn't join him. letting go of that was great for our relationship, even now that I am feeling better.
I think it is good to be realistic, that lyme and co may always be with you, but if you keep at it, the hope is you will eventually feel almost normal most of the time... you can have a great relationship.
and when you can't have good books at the ready (and not just lyme books)
here is a lyme memoir that struck a note with me...it's very sad, but also funny and hopeful and full of love.
posted
I don't know. I was on quite a roll - feeling well-as-ever having been off Lyme meds for a year and working through Lyme-related divorce. I started to date - and dated a ton for a couple months. La vida loca! I found a girl who I found to be just about all I could ask for.
Then I got sick. Like Lyme sick again. I tried to ignore it. Then I told her of it. She said "I'm in; what can I do?" And as I have continued to crumble, I have pushed her off more and more.
She cares for me a lot, and I care for her too. At the same time, I just hate who I am.
I know I shouldn't push her off, but I just can't not. And I wish I did not hate who I am. I know I should not. But I do.
Bottom line. If I am well, I can do romantic love. If I am not I cannot.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
If you care for her, jmb, would you consider seeing a good couples therapist? That worked extremely well for us in a difficult stretch when I was being pushed away too.
At some point there may be a transition from romantic to established love. That's a lot easier to deal with than romantic love--which, the neuroscientists tell us, has a brain chemistry similar to mental illness!
Posts: 431 | From New England | Registered: Dec 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I don't have any love story to tell, but I decided to do nice things for myself.
I started painting my fingernails. Just adding some bright pretty color helps me feel sort of normal and not so sick. - one very small thing but helps a little
I am new to all this, so I can't really give advice on TBD and love
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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