Spouse

I think you have to sit down and have a talk. Spouses don't understand what we are going through. Heck, I don't think anyone understands. It is very hard to explain all that is happening to our bodies.

I think because I cried a lot, it scared my husband. 28 years and I am not a cry baby and here I was crying. He really stepped up to the plate and decided to be my funny guy and help me make light out of everything.

I explained to him that I was miserable all the time and hurting. And I told him I hated complaining all the time and I was trying constantly not whine. I explained that it was hard just trying to take my herbs, eat right, and do everything else right and then to add on the top of it to try and stop complaining, it was sometimes too much.

So instead of complaining, we decided to make it a one word thing. "Symptom" was shouted. When I had my limit of head pain, feet of glass, twitches in my face, arms or legs, I just yelled out Symptom. Yeah, I was yelling it a lot to begin with but it felt good. And, then I didn't feel like I was complaining - I was just yelling a word.

I will try again. He seems to have little interest in hearing about the disease. We have been to a therapy session on this and he basically told the therapist that I'm obsessing too much about this and "it's not like I have cancer or something" (I get that comment a lot too). Last year he dealt with some major mental health issues. I was the rock through all of that...for the kids and him. Now that I am struggling I feel resentful because I pulled him through a pretty dark time (I believe that I burned myself out so badly during it that is why my immune system was already so poor when I got lyme). I told him that right now I need him to take the lead...to help out. He has basically told me that I'm putting too much pressure on him and mentally he cannot handle it. Right now I manage to somehow keep up with things okay, but knowing that I have support if I have issue at some point during treatment would be nice. The attitude is that if I'm up walking and not bed bound I am not that sick. I'm not sure what to do. I barely slept last night and this is becoming a stressor for me.

I'm so sorry to hear that this added stressor is happening to you. Its so hard to be in a marriage when you are sick and don't have a lot of energy to give out to anyone. A little support goes a very long way.

My husband still doesn't know a whole lot about Lyme and co-infections and I have been in this for a very long time. He has had them too, to a much, much lesser degree, and he is cured, so he understands how horrible it can be but as far as the science he is not too interested. I think men in general are not as dialed into health related topics across the board as women are.

Thank your husband for what he does do. Thanking someone motivates them to do more. He will feel good and you will too. And it will make asking for help easier.

As cd said above, ask explicitly if you need to as we sometimes think its evident that we need a hand but others can be wrapped up in their own thoughts, needs, situations etc.. and they just aren't noticing the signs.

Try to have normal, pre-lyme time together. If you can, go out to dinner alone, take a walk, try to laugh, enjoy your children together, do something he likes to do, go to a movie etc... This has you both remembering what you love about each other.

Perhaps have him attend a doctor appointment with you so he can hear first hand why/what you are doing to get yourself better.

Was the therapist at all helpful? Hoping this person gave you both some good action steps to move forward more effectively. Will you go back?

This is so hard. Not sure if any of this helps but I feel for you and understand what you are dealing with.

Thank you sunny40! Yes it helps a lot. Sometimes I just need other perspectives on these things. I do think that my husband is worried for me more than he will admit...he tends to bottle up his emotions (which is what lead to his issues last year).

The therapist is wonderful (I go to him every three weeks and have been ever since dealing with my husband's struggle last year). During that session, my husband expressed concern about me researching constantly about lyme. The therapist agreed that it's best for my mental health to try to back away from the research (I'm sure everyone can relate at how hard that can be at times). My husband also wanted to go on a short trip for our anniversary. At that time I had NO energy and I was pushing back. The guilt of not being able to be "me" was all consuming. My husband told me he didn't have expectations and that he just wanted to spend time with me. I agreed to go and although I was very tired, it was good to get away.

I tend to look at the "what ifs" with everything...looking at the worst possible outcome and then hoping and praying for the best. My therapist said...but what IF you DO get better? What if none of those things ever happen to you? He's absolutely right.

Husband and I have a no kid dinner date tonight (praying for energy for that right now as I'm still herxing a bit from starting a new med dosage on Monday). I'm hoping that will be good for us.

I will try some of the stuff you suggested...maybe my communication isn't as direct as it could be. I know that I'm hanging on to some resentment with him that I am working through after everything last year. I am trying my best to have quiet time, meditate, and process things. It has gotten better, but some days I struggle more than others.

Thanks to all for "listening". I really appreciate the feedback!

Hang in there, Snarf!! It's not easy for the spouse to understand what we actually go through, even if we explain it! My hubby didn't understand until he was infected - but even then, I made sure that he was treated quickly and effectively (we surely don't need TWO Lymies in the same house!!), so he has somewhat of an understanding of what I live with, but just barely, as he only had light symptoms for 2 weeks (1 week prior to treatment, 1st week of treatment). When he realized that I felt like that and a LOT worse every single day, his mouth literally dropped open and he just sat there trying to process it.

Previous to that, he was partially supportive, like if I asked him to specifically do something for me, he would - but if he was busy, he never did understand why I couldn't do some of the simplest things - like take the car to get the oil changed. The problem was, it set off a massive panic attack for me for some odd reason, and trying to explain what was going on during the middle of the panic attack - well we ended up in a fight. =(

But, we've come a long way since that time, and he has admitted to me that he felt so hopeless and was so scared that I would die that he simply couldn't cope with it. I had to explain that his way of 'not coping' wasn't good for me. I needed him to be by my side, even if he didn't understand it, because I was scared too. He felt he needed to fix me, and I told him he couldn't fix me, that was my job and the doctors job. I only needed him to love me and help me through this by helping more around the house and understanding that I may be bed ridden sometimes and not others, but that didn't mean that I was 'healed', it was just a "better" day was all. It surely didn't mean I was ready or capable of working in the garden (or whatever).

So for me, it helped to define not only what I expected from him, but for me to know that he still loved me and that he wasn't going anywhere either.

I was fortunate in that when I was at my worst, my kids were already grown and off to college. They grew up with me being sick constantly, so they DID understand as much as they could.

Hang in there! Chronic illness is VERY hard on many relationships. It takes time and understanding on both sides to get through usually. And know that you can come here to vent any time you need to!