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Posted 10/1/2016 3:38 AM (GMT -5)
How is everyone dealing with having this disease and maintaining a healthy happy relationship? I feel like my spouse of 15+yrs is becoming more distant and when I need support the most, she can't offer. We love each other but she will never understand what it's like living in misery every day. She is very stubborn and with my current mental state, we tend to argue more than we ever have and there's no reasoning with her. Quite frankly, I don't deserve the stress.
I feel like she should be equally involved in research/education about Lyme as I am. Maybe I'm wrong? I'm on 3 different abx and she can't name any of them. Maybe I'm asking for too much? I'd truly like to know.


She somehow flips the switch making me feel like she is the victim and I'm not appreciative of all she is doing. How can I help her learn more about Lyme because she only knows what I learn and tell her.

Should I continue the self research and teach her what I know or should she make a better effort in learning together?
Posted 10/1/2016 6:43 AM (GMT -5)
Sorry youre having issues. Anyone with chronic illness goes through somewhat the same thing. Im single, but lost friends and family members have distanced themselves. I dont know the whole situation and wont make suggestions based off one side. But what I will say is having a chronic illness demands more from you than just dealing with the illness. Your patience with others has to be stronger than it ever was. Thats hard, I know. And some people wont do it. They can, but wont. You have to let the little things slide. To do that you have to recognize what the little things really are. And what is little to you might not be to someone else.

Pick you battles in life. But please dont make a loved ones understanding or lack thereof one of those battles. It may be tough right now for them to love you unconditionally, but you must them if you want things to work out. You may need more from them than they are capable of giving. Understand and accept that. I put myself in their shoes, because before I got sick, thats where I was. I didnt know what chronic illness did to people. I didnt know what they needed. I didnt know how to help. Now that im on the other side of the fence, I get that. I understand. And it helps me have more patience with them. And I let things slide that I never would have before. Lifes too short. Ya know?

Wishing you the best. You will get through this. Little patience. Whole lot of love. God bless!
Posted 10/1/2016 10:23 AM (GMT -5)
This is a horrible situation. I've lived it and I can tell you there is hope. But its probably not anything you've considered. I've learned through lots of personal work, that you can't control how others respond and by defining your happiness by how others respond to you will cause a lifetime of emotional pain. The only control you have is your internal state. It's important to realize that she is probably scared and in defense mode to protect herself. You can help yourself by meditation and having empathy for yourself and others. Once you come to terms with your internal belief patterns that drive your thoughts and emotions, you then can rely on yourself when people trigger these feelings of anger and betrayal. They are just feelings. It's the story behind the feeling (she doesn't care, she doesn't love me) that is feeding the negative feelings. Change the story, change your life.

My spouse (of 22 years) has been completely unsupportive and telling his side of the family I was crazy and needed psychiatric drugs. I was ready to leave him but I found a great support group and it changed my life. I learned to stop judging others for their actions and about connection with others through empathy. He did come around quite a bit and we are in a better place. Nothing changed but how I regarded him.

It sounds counterintuitive to think that by changing yourself, you can change others. Start with the book The inner matrix by Joey Klein.
Posted 10/1/2016 10:56 AM (GMT -5)
My spouse is supportive...but I don't expect him to know what antibiotics I am on.

I also don't expect him to be involved in the research...that's my job.

He does listen when I talk about what I've learned...but may not retain it. That's all I can ask for.

Have we had some rough times? Oh yah. I think mostly because he is carrying everything else on his shoulders. I haven't worked for 3 years... The finances, and for a long time most of the housework have been all on him.
Even now, he never knows if there will be dinner made when he gets home from work.

So,, I try my best to be patient...and am thankful that he listens to my 'symptoms of the day' spiels.

It hasn't all been rosy....far from it.

We went two days without talking at one point.
Posted 10/1/2016 11:39 AM (GMT -5)
My spouse has no idea what's going on with my treatment - he only knows that I'm still trying to heal. He's very supportive about me being in treatment and in getting anything that we can afford for me to get - but I can't expect him to live this with me.

My spouse will listen to the things that pertain to my situation that I have learned about, but will not participate in any research or in any part of my treatments. I'm okay with that. He's there to do the things I can no longer do for the most part.

We can't expect there to be zero hard times in a relationship where one partner is chronically ill. It puts a ton of stress on both parties. This is likely the hardest thing many of us have ever gone through - it's incredibly painful for a spouse/partner to watch. My spouse couldn't hardly be in the house with me without crying all the time when I was bed ridden and in a really bad place with my health.

I learned the same thing that Cr3ativegirl did - it's all about us and how we see others efforts. We need to be grateful for any understanding/help we get. I've managed to change several relationships by changing how I view them, and feel much less stress now due to that.

Hang in there!! Come here to vent and to find as much support as you can, find a local "face-to-face" support group in your area (or start one!) to help you get through this.
Posted 10/1/2016 4:32 PM (GMT -5)
I just wanted to add that your not alone. ive been doing through a transition stage too with my partner. I had some amazing support a year ago when i first got unwell from my partner, he spent ages researching and helping me in so many ways, he literally stopped me from falling into such despair i do not know what i would of done. He changed his role from "im a man and i just work, zero in the house" (for 14 years) to cooking, full time childcare once home, looking after me (at one point i could not even wash without assistance) and all while dealing with a stressful new job and breaking down in tears everyday. It was six months later then i found out this addiction (of which he overcame 4 years ago) had come back as a result. in short he was burning out and not coping with giving me 100%, there was nothing left for himself. He had to get some time out.
now he can be distant and unistreasted at times with my lyme, even angry (not with me but just the lyme and our situation) and i feel more alone then i ever have being sick, but i know i need to change and stop looking to him for support, i need to go through a new phase where i start coping without that assurance every day and the process motivation he gave me, the price was his sanity.
so now i left him do what he can, im trying really hard to find other ways to cope (hence me coming here and making a long rant post the other night) and im trying to calm down a little, as the stress and resentment and hurt i was feeling (i still do at times) was draining and its my job to get better, and i cant, while im always wondering why he hasn't asked about my new anx/new idea/latest paper on lyme.
I think having lyme is the most lonely illness, and i completely understand your hurt. when i was at the clinic i met many others who had the same issue, some other halfs even refusing to believe there partners, which led me to believe that with some people, its outright denial stopping them from supporting us, they want to protect themselves. its messed up. this whole thing is messed up.
stay strong.
one day, we will be better and we will be the strongest people emotionally you could ever imagine.

Post Edited (waterbee) : 10/1/2016 3:35:04 PM (GMT-6)

Posted 10/1/2016 6:59 PM (GMT -5)
I am lucky. My spouse of 23 years is amazing. I don't expect him to research or know exactly what I'm up to with treatment. But, he cares and tries to understand. We struggled for a while when we couldn't have kids, but we have gotten past it and he tries hard to give me slack. We both work at the same office, doing different jobs, but we travel together... he got really frustrated with me that I was always late getting ready for work. We don't fight much. But in this instance I just started to cry... I think that moment for him turned on a switch of understanding. I simply told him I was doing my best and to leave without me and I'd come in later. Now, he is cute in the mornings, being patient, re-waking me if I can't do it on my own that day. He saw my short remission and then my backwards slide, and he is very interested now in my research. He drives me to treatments, and we talk a lot about how I feel.

Believe me, I am grateful for him every day. I hope I can be a good spouse again someday.
Posted 10/1/2016 7:58 PM (GMT -5)
3 words. Not very well.







It's killed my patience and created anger issues. I want to smack everyone and just crawl into a hole.
Posted 10/2/2016 1:04 AM (GMT -5)
Thank so for the advice and support everyone. this is helping me learn. I appreciate it
Posted 10/2/2016 9:28 AM (GMT -5)
Something I forgot to add - my husband was infected with Lyme about 2 years ago. I was able to recognize the symptoms at the onset, and insisted he get in to his doctor - and I went with him, armed to the gills with documentation about the poor quality of the testing. We were able to get him 4 weeks of Doxy at 600 mgs daily, fortunately.

He doesn't have a lot of confidence in herbs, even though he's watched me treat and heal with only herbs - but that's okay. I just didn't want him to go without treatments when he needed them - and neither did he!

He told me that if the treatment didn't work, he would follow my every word in treatment, as he had seen what chronic Lyme was like and he had zero desire to mess around with and end up with it.

That told me that he HAD been paying attention and just couldn't deal with watching me struggle like that. I don't believe we can expect others to REALLY understand what we are going through as it's hard for us to understand it all, and we are the ones living it.
Posted 10/2/2016 11:49 AM (GMT -5)
my fatigue (before I knew it was lyme) killed my last relationship. My girlfriend was very driven and passionate about career/work and probably saw me as the opposite and grew tired of me not doing chores etc.

Does knowing make a difference? I don't think it would have in my case.

Now, I'm single and I won't get into a relationship until I'm near 100%, no issues waiting.

Caramba
Posted 10/2/2016 12:04 PM (GMT -5)
I tried a few times. Was labeled a lazy American man.

Lazy.... LOL, (was a upper level competitive adult athlete in the past), lazy is not in my blood.

At 50, I still look younger and very fit for 50, toned, no grey, so people dont believe me. They only see the outside.

They have no idea how bad /ill I was 8 years ago - I did look bad then too though.

I have been able to sleep for a little over a year now, its nice, but I'm still fatigued after work and do take a NAP on my couch or in the car if I have after work plans. And still working on rebuilding my messed up muscles - pain is involved.

We need a pain / fatigue meter on our foreheads for others to see.

Post Edited (astroman) : 10/2/2016 12:15:01 PM (GMT-6)

Posted 10/2/2016 12:44 PM (GMT -5)
same here astroman, I look younger than many my age, with dark hair. I think the next time someone asks me what my secret is, I'll reply: Lyme :) :) :)
Posted 10/2/2016 1:16 PM (GMT -5)
They'll have lyme injections before you know it. You might be on to something.
Posted 10/2/2016 1:22 PM (GMT -5)
@ AzerilA.......you cannot expect your partner to be as involved as you are....that is just irrealistic as well as selfish is some ways. I do not mean offense. But any disease it is your personal battle. I do not believe in "shared" emotional support at that level. For that matter I do not believe in shared back account...ha ha ha......

Anyway that is no different that the women who expect a partner to share the shopping experience with them....in a practical sense. As a man I would dump a woman like that in jiffy.
Lyme is also a very lonely disease. My husband listens to me and absorbs what he can but has no clue of a thing...in broad or details. It upsets him that I am not well and he would like to help. His support to me is that he cannot question what I spend for supplements....and/or because the house looks like a mess and floors needs swept and laundry is a week backed up.....
Ya know it is lyme.
The research and involvement is not important as much as the support on other aspects.
Posted 10/2/2016 1:41 PM (GMT -5)
I think im dying and nobody gets it ..she trys to help me livr she wants to do stuff..im knocking stuffnoff bucket list but everything causes me anxiety...bart sucks as bad if not worse than lyme ...i say a bunch of ol friends and everone is living life ..one guy said oh lots of people with chronicbillness just dont talk about it ...and ih didnt you recognize the bulls eye...i really thought it was a spider bite...now iv abx and bvt is my life ...she aske if it was my last day on earth what wiuld i do ?...and she got her ex boyfriend's number who happens to be a able bodyed millionaire. ..poor stephen hawking syndrome ..how he must hate ...
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