Can I get partial credit?

Warning: adult themes ahead.  It's about to get really real.

I am going way out of my comfort zone today--let's talk about sex.  But not in a fun, Salt-n-Pepa kind of way.  This can be a very difficult subject for FibroMIGHTs.  It can be a very frustrating subject for the significant others of FibroMIGHTs.  I don't think anyone can deny that sex and intimacy are a big deal in long-term, committed relationships.  Not having that physical connection, or having it disrupted, can be hard on both parties.  This is not a fun argument, especially on top of everything else a FM deals with.

I met my husband pre-fibro.  We dated and married in our early twenties and our love life was what you would expect from such parties.  Now we are in our mid-thirties and have kids and jobs with long hours.  And my fibro.  So we not only battle the doldrums that come from being not-young, working long hours, and raising 2 energetic boys, but also the pain and chronic fatigue that I have.  My husband has been extremely gracious about things, he really has.  I'm sure he feels more frustration than he voices, though.  And I get frustrated, too!  Luckily for us, my fatigue and his work exhaustion often coincide and the two of us offer each other partial credit--we express our mutual desire to have sex while declaring inability to engage.  It's silly.  But keeping it out there in the open helps us avoid resentment build-up from secretly wondering if the other is upset.  I think we both feel better knowing that the desire is there even if the energy is not.

If you are the significant other of a FM (or any other chronic pain/fatigue sufferer) know this: we WANT to have sex.  Or at least WANT to WANT to have sex. We haven't sworn a vow of celibacy, I promise.  It's just that falling asleep during the act is a definite possibility.  Or the thought of finding a position that won't trigger pain is too daunting.  We still find you attractive.  We still want to be adventurous.  It's just that back and joint pain aren't terribly sexy.  Until someone comes up with the Fibro Sutra you just have to go easy on us.  Okay?

And don't forget that FibroMIGHTS experience greater than normal pain after exercise.  Sex counts.  There has been many a time that I showed up at work limping or clearly in obvious pain and had to field questions about what happened to me.  "Uhhhhh...I slept funny last night."  Oh yeah, fun every time.  Is the awkwardness worth it?  You betcha!  You just have to understand that these are extra things we FMs have to deal with.  Along with guilt over not being ready to go every time you are.  It's hard to be intimate when you don't even want to be touched.  Patience and understanding are essential on both sides, my friends.  Please give yourself or your other a break--and maybe even be willing to give partial credit for even voicing the desire when the flesh is weak. 

Phases of Fibro...it's a circle

Like so many things, the emotions and feelings of fibro come in phases, like the pain itself.  Unlike some processes, though, the Phases of Fibro do not end at Acceptance.  They are not linear.  They come and go in an endless circle.  Some days are good and some are bad in the quagmire that is fibro.  You can go for months feeling great and confident and like nothing can keep you down.  And then you get hit with a bad day--the kind of day that makes you feel like giving up.  For me, understanding a problem makes it easier for me to cope.  So here is my list of the Phases of Fibro:

Frustration, Part 1: this is the one that comes before your diagnosis.  It is the frustration of not knowing why you hurt and are tired all the time.  Mixed in with this version of frustration is Worry.  Worry that you have something terminal or that you'll never have an answer.  And it's the frustration of knowing that you hurt for a reason that no doctor has an answer for.  All your tests are normal but you are clearly not okay.

Panic: this one hits right after diagnosis.  It's the "How am I going to live like this for the rest of my life?"  It's panic over the thought that you will never have a normal life or the life you planned for.  It's panic over how bad things are going to get.  It's panic over how your loved ones and friends will feel about you having a debilitating illness.

Depression: "How can I live like this?  How can anyone love me or want to be with me? I'm worthless; I can't do my part and I'm letting everyone down."  This one's a bitch.  This phase leads to deep, dark places that are difficult to crawl out of.  This phase is the most debilitating--moreso than the fibro itself.  It's the hardest to fight and the worst to watch from the outside.  It hits when you least expect it. 

Guilt: the evil stepsister of Depression.  You feel guilty about turning down fun things or time with others.  You feel guilty about being tired all the time and not getting enough done.  It's irrational but no less real.

Anger: "This sucks! I hate being limited.  I hate this pain." This phase can be productive as long as you don't let it consume you.  Use the anger for good and to push through other phases.  Don't let it make you bitter or angry toward other people. 

Frustration, Part 2: "I hate not being able to do all the things I used to do."  This is the phase that can get you into trouble when you think you can take on more than you really should.  It gets tied up with anger and depression, and can sometimes result from Determination.  Or it can result from knowing in advance when you are going to face extra pain.  Like when the weather forecast shows a week of rainy weather and that's one of your triggers.

Determination: usually comes after Anger.  "I won't let this stop me from living a full life!  I'm going to find ways to beat the pain!"  This is a great phase!  I live here a lot.  It's the phase that prompted me to start this blog and to keep it up.  "This is my fight song; take back my life song..."  You can sing the rest.

Acceptance: a very good place to be as long as you maintain it with an edge of determination.  "I can deal with this.  I have to make allowances but I can live with this.  I have found coping mechanisms and I'll keep looking for more."  This is the zen phase.  It doesn't mean you like what you're facing but that you are coping well.  It can be tinted with either hope or despair, unfortunately.  You have to keep the scale tilted toward hope. 

Today I have struggled with Guilt, Frustration, Acceptance, and Determination.  I'm not sure which one is winning right now--I'm tired, didn't do as much as I had planned, I can see the rainy weather coming, and I wouldn't let myself skip writing this post.  Gentle hugs!