One of the toughest things about being a husband to an RSD partner is the feeling of helplessness. You know how guys are…we’re fixers. I have accidentally fixed a few things around the house over the years, but I can’t fix this, and that’s hard to take sometimes. I suppose I should be consoled by the fact that her doctor can’t really fix it either, but that doesn’t help her situation much. Really, this is along the same lines as my last post. All they’re doing is throwing a bunch of drugs at it and hoping it helps. It probably does for most people, but I wish there were a better, more long-term solution. RSD has forever changed my wife, both physically and otherwise.
I’m afraid to touch her for fear of hurting her. About a week ago, I walked by as she was sitting in her chair, and the movement of the air as I passed by hurt her. It creates a fear in me of doing something wrong that is eroding my ability to do the things we used to do. I have resigned myself to the reality that we will never go skydiving, mountain biking, or anything which begins with the word “extreme.” That’s Ok, I never wanted to do those things anyway (plus I haven’t met my deductible yet this year). But, giving her a hug or rubbing up against her – it’s those everyday things I miss.
The mental and emotional things are tough, too. That’s where the whole “Two Worlds..” thing comes into play. No matter how crappy my day is at work, I will have spent it without the constant feeling that fire is running through my every vein. Seriously, how are you supposed to deal with that kind of thing? It is no wonder RSD and depression seem to come hand in hand. No matter how much I listen, how much I empathize or how much I want to fix her…I will never BE her. And being her is the difference. That’s what keeps the wall between us. I can comfort her when she has a flare-up, but I can’t do anything to fix it. It’s like we’re both on a roller coaster neither of us wanted to ride, but we’re strapped in and headed up that first big incline.
The only meaningful revelation I have had in the last 13 years is that RSD is not one disease. It is a series of dreadful conditions which, when seen as a whole, is RSD. It not only affects the body, it changes that mind and personality of the one who has it. And the truly ironic thing is that she never asked for this. She never engaged in any deviant behavior which brought this about. RSD chose her; she did not choose it, but here we are.
In 1998, I stood in front of a minister and a few friends and family, and promised her that I would always be there. All the things you promise her – sickness and health, richer and poorer and so on. Well, I hope this is the "sickness" part. I am ready for her to have some health. She deserves it, and so do I.
I’m still working on the “richer” part.
Really enjoy your Blog. I was diagnosed with RSD on Nov. 1999. My husband feels the same way you describe. Wanted you to know that I so appreciate they way you speak about your wife. As a reader I can feel the love you have for her.
ReplyDeletePlaying catch up with your blog after being referred here by another RSD sufferer.
ReplyDeleteYou can never truly walk in another's shoes, no matter who they are. What you Can do is take her word for things, unless you have really good reason not to. In my experience, men try (or want to) fix too much, and most women just want to be heard and accepted. I know RSD needs fixing... but that's another issue. lol The people who are of most help to me when I'm suffering through a flare, are those who spend time with me and just act normal. They are totally open to listening and trying to understand what RSD does to me, but they don't get swallowed up by it. Forget wanting to fix it, or any thought of that at all. Comfort is HUGE!! Comfort is the best you (and she) can hope for. From one who's living this alone; don't underestimate the power of your presence.
Laugh with her whenever possible. Laughter is great medicine and actually gives natural pain relief.