Very Bad Stress on my relationships

I'm sorry this has been hard on your relationship.

My husband and I had some rough times in the first 6 months of my illness.
I was a mess - and he was struggling to not get pulled down too far...as he needed to work...and maintain the household.
I had nothing in me to give to him...nothing at all...all I could do is take...I didn't care about the house...I didn't care about much.
The minute he walked in the door...I would cry....it was desperate times.

I don't know how we made it through it all...

I did go to a counsellor for a couple of months...just so I could talk about it...and lessen the burden on my husband.

Make an effort to tell your spouse that you understand how difficult it must be for her and you appreciate that she is there for you.

Lyme is not fun when you are in a relationship, but I cannot imagine being alone with it.

My heart aches for those that have no one to hold them when they need to cry.

I could not have gone through this without my husband. He was and is my rock. He kept me laughing when I didn't even feel like it. But no one knows me better than him. He knew how to perfectly distract me - make me laugh.

YAY that you can feel your body detoxing!! Good for you.

Nope, there's no way anyone will understand what it's like to have Lyme and company until they too have it. I've been living with it almost my entire life, and my hubby knew this when we married 16 years ago, but when he got Lyme back in 2014, his eyes got really wide when we started talking about his symptoms and he asked "Is this what I felt like daily?" and I answered yes. He was then amazed at the things I was still doing, even though I lived with those feelings. 14 years of living with me and watching me nearly die from this wasn't enough for him to understand, but getting it brought new light to his understanding.

Now he just asks if I'm up to doing things, not expecting me to. People simply can't understand the total body involvement or the persistence of the illness/bacteria. Not to mention all the misinformation that she is undoubtedly exposed to.

The other thing that I learned (the hard way of course!) is that spouses have a lot of very real fear that we won't survive it. It's VERY scary for them as well watching us deteriorate. And that's hard for us to deal with too.

Hang in there, give her the space she's asking for at this time to see if she just needs to adjust. Gently encourage her to read some of these links when it seems appropriate to do so:

Under Our Skin (Lyme Disease documentary):​

/www.youtube.com/playlist?list=PLVSen6FWmBOEDeJ7btGNc4tUpV7axOt8M


​ Lyme Spouse - support for your loved ones:
/www.facebook.com/LymeSpouse

So you know someone with Chronic Lyme disease:
www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t​


​" Dear Family of a Lyme Disease patient ​​"
/www.lymedisease.org/lymedad/?print=print


/gotlyme.wordpress.com/2008/10/21/top-ten-things-you-can-do-for-someone-with-lyme/

10 Things To Remember If You Love A Person Who Have Lyme Disease
/www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance

LOL! For some people, a face to face support group can be very helpful. They don't just sit around talking about their aches and pains though, usually they have discussions of treatments, and some even have speakers. I'm going to be starting a support/informational group for my area when I'm up to it, so I've done some looking into it.

It is rough. In my relationship I managed to hide it enough for 10 years because I only saw him on weekends. In trying to help him out while he waits for his disability he's seen me every day and for a variety of reasons including getting RMSF last year on top of my long term Lyme, I've deteriorated badly on all functioning levels impossible to hide or fake. He often acts concerned, but he stopped our intimacy when I was diagnosed with the RMSF. Once he (if he ever) gets his disability I know he will disappear.

Also, things have gotten tense with my daughter again. I was sick with the Lyme from her 4th birthday on, and by the time she was a teenager her empathy turned to hate. We've had a rocky to non-existent relationship for 17 years now. She doesn't understand when I am feeling too poorly for her and her husband's company. That's all the family I have, and no friends, except on line.

I wouldn't wish me on anyone right now anyway. How horrible it must be to be with something that suddenly feels like they're going to die at any moment. The only thing I can say for these two, barely in my life is that they know that I've had many times when I would never imply such a thing, and must take me seriously.

My son moved out a few months after lyme symptoms started. (Not because I was sick...but because he was ready to be on his own at 20 years old.)

He has seen me at my worst...but now I try not to show the gruesome side of my illness. A close friend of mine criticized me and said I should let him know how bad I am feeling.
I don't see the point of that. He lives in another city and he knows I am battling lyme disease...he sees all the bottles on my counter of supplements....when he comes home...he sees my home isn't kept up the same as it used to be...
For the most part I put on a brave face...but he knows I'm not the same.

But is it necessary to tell him how horrible I feel? Do I need to remind him that my body hurts, that I have nerve pain, joint pain...etc. I don't want him to feel sad for me...this is an exciting time in his life. It won't help me - in fact it would make me sad to see him worried about me.

I have a husband who gets all the gory details...that's enough. (poor guy)

I got sick in September. I started with chelation and as I did that my lyme symptoms became more well known. Per the Cutler protocol im still toxic. I have deranged minerals but Ive done well in detoxing. I just recently started taking a binder and am again taking probiotics. I stopped probiotics 1 month ago as I was getting phlegm after taking them. I believe that is babesia eating it up. I get a lot of breathing issues after eating anything. They want me to take nystatin but I will wait a bit. Im on mood stabilizer and am waiting for naltrexone to arrive. After 1-2 months we will be looking at herbs, probably Buhner.

Well I haven't been treating that long and going through 2 years of wondering what was wrong with me. My husband has been supportive even taking off for 2 months when I was really weak and fatigued...taking me to this doctor and the next. That was last year before I knew what I was dealing with. The debilitating fatigue was on/off last year to April of this year, and it really showed my husband that I was no longer, super wife or super mom. I know that at times it can be frustrating for him. That's why we really try to keep open communication. He takes me to most doctor appointments when he can or my mom takes me. I don't drive much at all these days because I'm still prone to dizziness or sudden tiredness, but not that awful fatigue that I had before. I have to tell you that joining this forum when I did was the best thing that ever happened to me. I am hoping that I am ahead of the ballgame since I just began with symptoms about 2 years ago. Like others, my herbs and vitamins are in the corner of the kitchen counter and it is an everyday reminder to him and my kids that I am a little different now and that I have to take care of me right now. They have never seen me sick. I've never seen me sick (lol). He actually told me that he was at a client's house the other day and that the husband and wife are both dealing with health issues and that they take so many herbs and meds that she has set up a table in the garage. He said he thought about me and it really put it into perspective that all things considered things really aren't that bad.

Funny, on Saturday I had a breakdown balling session (which I don't do) because I said I didn't think he loved me anymore. Well he put me in my place about that (lol). I just think you have to keep open communication, but also not be whiney about it all the time. You have to let them know what works for you and what doesn't. For example, I can't watch certain things on tv or certain movies anymore because it causes too much of an emotional reaction. So it's not that I don't want to share a movie with my hubby, but we've got to negotiate what works for both of us. It's a process for people to get to know the new "clothing" that you wear now. It's so hard for some people to accept that you can't do the things that you used to do or react the same way that you used to. Luckily, my husband has been doing pretty well getting to know my new "clothing." I've had to get used to this myself. I'm so happy and grateful that I have days now that I feel well enough to go to a movie and hang out a little with my family. For them, I know it provides a sense of normalcy. My kids are great. They are young, one just turned a teenager, and while I don't tell them everything, they are highly intelligent and they know when I'm not having a great day. Ha...they even caution me not to try to do too much. I have to say that I am blessed to have them. They see the strides that I am making and they also understand when I have to back-up and slow it down.

It would make me sad to see him worried about me. He knows I have limitations now...but when we go visit, or he comes here...I don't want the visit to be about me telling him how horrible I feel.

He doesn't make any demands on me...in fact when he comes home he always offers to cook dinner for me.

I do feel supported. i just wish I could have my life back - don't we all?

I don't even know what that would look like...it seems like so long ago...

I have 'lost' some symptoms and others are quite a bit better...but a few of my worst ones are still hanging around...so i don't feel a lot better.

Some of my improvements:

- sleep pretty good
- joint pain much better on most days
- muscle pain better
- twitches better - only happen once in a while
- clavicle lymph node swelling and pain - GONE
- frozen shoulder - range of motion - much better
- neck pain - much better
- finger joint pain and stiffness - much better
- pulsatile tinnitus - much better
- tailbone pain - GONE
- muscle atrophy -GONE

I still have quite a few symptoms not listed above that are not better
What is still bothering me a lot - nerve pain, vibrations, shivering, sweats, short-term memory

My symptom resolution has been slow....It's not like I wake up one day and a few are gone...they get a bit better over weeks/months...slowly.

The king said...
I believe the babesia is the worst of my symptoms. My head is so messed up its crazy. The constant head inflammation and pressure is God awful. Gasping for air pretty much most of the time. If I can calm those symptoms I would live almost normally. Im just getting started slowly on my detox.

Are you going to try the Pinella and burbur, it can help. Also I think I mentioned the Apex Neuroflam to you as well. It was made to target brain inflammation.

Yes the brain stuff is awful. And the shortness of breath is no picnic. Try wild oregano oil P73 for the shortness of breath. It helped me in the past. I just re-started it because of that very symptom and it's already making a difference. Just put some drops in water if you get the tincture or you can get the capsules. I use the tincture. You can't go wrong with the WOO. Plus it attacks different viruses and bacteria that your body is dealing with.

I have a great family. My mother was and is my biggest support I think that i would have killed my self if it was not for her.... I had a tough time with all that i heard from the docs from myopathy to mitochondrial disease besides the burning and muscle pain, and sickness. I love my mother period!!!! My wife she was not the support that i was expecting i'm not saying that she is not a good person actually on the contrary she is great and has an amazing heart....but I was very sick getting worse by the day and she was more on the docs side once they could not find nothing to name my problem... so I believe that she thought that i was a little crazy even after watching me spending 17k... it still make me wonder how. Anyways now i feel even more upset about it because i know that i got lyme when i went to the woods to please her because i hate the woods and after 3 days of saying no to her i had to say yes to stop the argument and i got contaminated. So i have this feeling that the person who " caused " me this terrible problem was not 100% there for me when i really needed it. Maybe I'm wrong but that's how i feel.