Monday, May 23, 2011

Marital Guilt

It hurts to have Fibromyalgia in more ways than may be obvious at first glance. I believe that Fibro creates even more emotional pain than it does physical. Nothing reaffirms the emotional pain more than my husband's eyes when I see all hope crash and burn whenever he comes home and finds me still hurting.

There is always the space of a breath after he asks me how I feel where I have to make a conscious decision between confessing my pain or keeping it to myself by avoiding the question or lying. I know that if I decide to choose honesty I will see that look of disappointment and pain, and feel horribly guilty for being the instigator of those feelings.... especially when he comes through the door after work smiling and one look at my tear-stained face wipes the smile off his for the rest of the night. There is no way to deny that I am the cause of his pain, even if I'm not causing it on purpose. There is no way to deny that my Fibromyalgia ruined his happy. How can I not feel guilt at this?

Sometimes I've been in a flare for so long that when I tell him that I hurt, his only response is “What's new about that?” That's as hard to deal with as the look in his eyes. It forces me to remember how much time we have lost with each other because of the pain or fatigue. I know that his anger isn't directed at me, but at the disease... but I still feel the guilt for being the host of the disease.

If I choose to try to protect him from the truth I will pay a heavy price for the strain of trying to carry the lie... and in the long run, I most often fail miserably. The fact is that the better job I do of hiding the pain, the higher the price I will pay, the longer I will be paying, and the sooner I will have to pay it. And I usually try to hold on too long.

On my husband's birthday I held on as tight as I could, determined to make it special for him and not let my Fibro kill yet another BBQ. That night I broke down and the pain I'd been pushing away caught up to me like Arnold's secret son. It's a good thing the next day was Mother's Day and he had already planned to wait on me hand and foot, because he probably wouldn't have had much of a choice. That flare ended up lasting two weeks and making my husband pretty damn ticked I stressed my body out that badly... and making him feel guilty that I cause myself pain for him.

The really sucky part is that no matter what I choose, we are both going to lose. If I tell the truth, he's unhappy, and I feel guilty, and then he feels guilty because I feel guilty. Or I don't tell the truth, and I'm inevitably caught, making him feel guilty for making me feel like I have to lie, so I feel guilty, and so on, and so on... until we're both just walking people-shaped sculptures of misery and guilt... alternately sharing our feelings and then keeping them secrets... and keeping the cycle of guilt and frustration going.

I know what's probably going through some of your minds, because I've had those thoughts too. I'm the one that's sick, he should be extra careful not to upset me and stress me out further.... he needs to keep a tighter lid on his emotions and he has no right to be angry..... WRONG!!!!!!!!

No one ever grows up saying "I want a sick wife, a pretty much nonexistent sex life because she hurts too badly to make love, to go to work every day while she lies in bed popping pills and then to come home and take care of her, a kid or two, cook dinner, put them all to bed, and try to find the energy to clean up after holding basically 1 full time and 3 part time jobs... while never having any money to spend on myself because all the extra ends up going to medical bills.”

I am not the only one that saw my future darken with my diagnosis. He may not feel the physical pain of Fibro, but he feels the emotional toll of it as deeply, if not deeper, than I do. He is even more isolated than I am... because who really understands what he is going through? I at least have support groups and friendships with women in the same situation I'm in. Like most men, he feels a strong responsibility to protect and take care of his family, but there is no way he can protect me from my own body. He can't fix me... and each moment is another reminder that he's failed to keep me safe.

He tries so hard to hold in his frustrations. I am in awe of that strength... I don't think I could do what he has done for me over the course of our relationship. He is an amazing husband, a wonderful father, and a fantastic friend. He is an amazing caretaker and nurse. But his guilt is tangible when he reacts sarcastically or with anger to my pain.... Or when he "allows" me to push myself too hard.... Or when he knows that I caught that heartbroken look when he gets home from work and asks how I'm doing and I am not able to tell him I feel amazing.... Or when he's massaged me for so long his hands hurt and he has to stop.... Or when I tell him there's nothing he can do. And I think that that's a big problem... because it's totally okay for him to have those feelings. It's human, and it shows that he cares about me... because if he didn't he wouldn't get so upset.

But we can't live like this. I can't lock myself in the bathroom with the shower running to cover the sounds of my sobs when he gets home, like I did only days ago. I can't continue to have warring emotions when he comes home... part of me desperate to see his beautiful hazel eyes smiling at me and feel his arms around me in a tight hug, but the rest of me knowing that what I will actually see is those eyes darken in disappointment when he realizes that tonight will be another one where he is unable to relax. He needs to be able to express his feelings about my illness and what my being sick means for him. And we need to stop keeping our negative emotions secret and bottled up.

The only way to fix things is to really focus on communication. Maybe over sharing would be beneficial for a while, until we get used to not bottling up. Maybe if we let it out, it won't really be a big deal anymore... and we'll be on a better track to individual and marital health. I know that if we don't, Fibromyalgia is going to drive in a wedge that may never be able to removed, and I find that to be completely unacceptable.

How do you all keep your relationships healthy? I know both Brandi and I are eager to hear what works for others.

Tuesday, May 10, 2011

Terms of Agreement for a Fibromite

I believe things happen for a reason. It might be a bad reason, not really thought completely through by the powers that be, or it may be a completely invisible one. But I do believe there is a reason for everything that happens in our lives. It's easy to believe that I got Fibromyalgia because life is unfair. I can be a victim and lay back in bed and cry away every day. I can wallow in my pain and let Life go on around me, watching and not participating

Or I can believe that I got Fibromyalgia for a reason. There were qualities and experiences in my life that I was lacking... that I never would have had if I hadn't gotten so sick. (If you have Fibromyalgia, you know the basic story of what we went through those first months/years. Someday I'll share the “how I got sick” story, but it's not really relevant to this one.)

When I hit a remission during my pregnancy, part of me hoped that I would be one of the few women that pregnancy cured. When the Fibro returned again about 6 weeks after giving birth, I had a major break down. This was NOT the way I wanted to be raising my son.

Desperation and depression drove me to begin utilizing the support groups on Facebook. I became extremely active in a particular group, and began to find friends that really understood what I was going through. My mom (a long time chronic pain sufferer) and I bonded in our pain. I read a book called “How to Be Sick,” which helped me finally accept that Fibromyalgia was just going to be a part of my life and I was going to be sharing my body with it for a long time.... the book made me realize I needed to learn to cope with my life TODAY, instead of worrying about what would greet me when I open my eyes tomorrow. I decided that if I was going to share my body with this syndrome, it was going to be on my terms.

I suppose it was natural that these terms blended into the experiment with positive thinking I started with the Facebook group a few months ago. I made a conscious effort to try to change the way I thought and felt about being sick. My life slowly improved from almost every angle. My relationship with my husband swiveled to “amazing.” Coping with a teething, crawling 6 month old was easier. I was able to let go of the things I couldn't change like the pile of dishes by the sink and the people who didn't really get that I was sick. As emotions became more stable, the Fibro did too. I'm still in physical pain each, but the emotional pain I had been under for the past several years was lifting and I began to co-exist with my illness instead of letting it run my life.

Then something wonderful happened. I didn't have to consciously implement the terms... they started to become natural to me.... and for the first time in my life external stressors and “what-ifs” didn't send me into a tailspin of emotions and anxiety attacks. I was coping with Life better than I ever had pre-Fibro. Part of me wants to wonder: “If I never had Fibromyalgia, would I have ever learned to chill out?”

But that would be against my terms, so I won't. I refuse to look this gift horse in the mouth.

Here my "Terms of Agreement for a Fibromite":

  1. I will take all medications and supplements that may help me (and that I can afford.) I will take them as scheduled.

  2. I will not be a martyr. If I need to sit, I will sit. If I need to go home and go to bed, I will go home and go to bed. If I need a pain pill, I will take it.

  3. I will pace myself, even if it takes a week to clean one room of the house. If I overdo it, I will accept the consequences and allow my body time to heal.

  4. If I can't do something I am asked to do, I will say “no” without guilt.

  5. I will be grateful for what I can do, and not lament what I cannot.

  6. I will not invest myself in the hope that the next thing I try will be a cure. I will not focus on a cure until there is one; instead I will focus on managing my symptoms.

  7. I will not be ashamed of having Fibromyalgia OR taking any necessary medications. I will not let ignorance cause me additional pain and stress. Instead, I will take every opportunity I am given to spread awareness and erase ignorance.

  8. If I can't make myself feel better, I will put my energy into helping someone else feel better. I may not be able to help their pain any more than I can help mine... but I can try to help them smile and cope.

  9. I will not waste my time or energy on things that I cannot change, whether they are related to my illness or just a part of life. If I can't change something, then it is not worth fretting over.

  10. And most importantly: I WILL find the Silver Lining to having Fibromyalgia. I will no longer make pain the focus of my thoughts, heart, and soul.

Sunday, May 1, 2011

Finding the Silver Lining

When Erin first started The Silver Lining of Fibro on Facebook it was a personal experiment to see if she could change the way she thought and felt about being sick.  After being encouraged by her support group, she decided to challenge herself to find something positive related to her Fibromyalgia each day... and every day felt a little bit better about herself and her disease.

It worked.  Through this experiment and her support group she came to a point where she could start the healing of her soul since it was impossible to heal her body.  And it seemed that people were listening.... and that maybe she was helping someone else the way that her support group helped her.  Her depression lifted, the view of the future brightened, and each day it was just a little easier to face the challenges and changes to come.

At the same time, Brandi and Erin were rapidly becoming friends through the aforementioned support group.  When Brandi brought up the idea of starting her own blog, Erin jumped on the opportunity and asked Brandi to join forces with her to turn The Silver Lining into an "intermediate" level support group for people with fibromyalgia.  A place for the people that have come to accept their conditions and limitations and still live each day to to that day's full potential... no matter how unpredictable and variable that potential is.  A place for people to share their triumphs, their failings, their heartaches, and their joy.  A place for people to share their lives, not just their disease.... to remember who they were before they got sick and grow into a new and whole person even if they had to spend several days each week in bed and take countless medications. A place to learn how to cope after they accept there is no other choice other than to admit defeat.

Most of all, they wanted a place for friendships to form... because in knowing each other they figured out that the connections that had been formed despite their daily exhaustion and pain had become the true silver lining of having fibromyalgia.