Ok, so I haven’t posted to this blog for a while. The good news is that I haven’t had much on my mind about my wife’s RSD for quite some time. She seems to be going through a relatively good stretch with her pain. Curiously, the number of meds she is on now pales in comparison to what it used to be. That, of course, will lead one to wonder if we were ever on the right track with all those medications in the first place. I prefer not to speculate for fear of losing my tenuous grip on positivity.Her new doctor’s style has really put things in perspective for me, and probably her as well. It sheds some light on the fact that there is no solid protocol for treating RSD, and that every doctor seems to have their own methodology when it comes to pain control. For her new guy, less is more – and it seems to be working pretty well.
I guess what has been on my mind lately is the fact that she is having a really hard time getting comfortable for sleep. Actually, “comfortable” is a bit of a stretch since there really are only degrees of discomfort. She has meds to help her fall asleep, but there seems to be a window of opportunity there. Once she has taken them, the clock begins ticking for her to settle down and fall asleep. If she cannot fall asleep, and misses the window, there is no telling when she will sleep again. There have been times when it took a couple days. So, our nightly ritual now sadly revolves around when she takes her meds and how much time she has to settle into slumber.
From my perspective as a partner, it only serves to further isolate us from each other in the bedroom. Add that to the list of things which drive a wedge squarely between RSD couples. And forget intimacy. She has far more important things on her mind than cuddling with me. And even if we did, chances are I would touch her somewhere that hurts. It’s a really tough position to be in. It’s a total conundrum. She is desperately lonely and isolated from me, just as I am for her, but forces are conspiring to keep us apart in the bedroom. This isn’t even about sex – this is strictly about physical closeness. I know that this is something we both desperately need, but making it happen takes an orchestrated effort on our part, and most attempts end in utter failure.
I used to hear that 80% divorce figure and scoff. “That will never happen to us, we’re too strong together.” But now I am beginning to understand how the insidious nature of RSD seeps into every facet of a relationship. It’s not just the constant pain – it’s the depression, loss of self worth, insomnia and general lack of direction in life. That house is like a prison to her, and no amount of encouragement or prodding on my part will change the fact that it is a struggle for her to get back out into the world again. She feels as though she has lost her purpose, and I completely understand that. I am filled with pity and hopelessness sometimes. It must be hard to live with RSD, but I can tell you from experience that it is also heartbreaking to helplessly watch your partner lose everything which was of value to them – their career, their independence, their very way of life. It’s absolutely excruciating, and I don’t even have the disease.
She is in a depression right now, and we have been through this enough times that I stopped asking stupid questions long ago. “What’s wrong, honey?” “What can I do?” I am consigned to the sidelines while she rides this out. I have said it before, but it warrants repeating – RSD is not one disease, it is a woeful combination of conditions, which all suck. I love my wife dearly, and I cannot imagine my life without her. I wish so much that there was something I could do to ease her troubles. I am glad that her pain is better right now, but the fringe conditions are kicking our asses. This disease is evil, but I am more determined than ever to remain by her side, not out of any sense of duty, but because I love her. And because I made a commitment to her in 1998 to stay by her side through the good times and bad. Hopefully, this is the bad.
The realization that I have come to is that love is not perfect. It is inherently flawed in some way, and the challenge to keeping love alive is to both acknowledge and peacefully coexist with those flaws. Lord knows she puts up with my flaws (of which there are many). The bottom line is that my life would not be my life without her in it. She fills me up in ways that she is probably unaware of. Everything that is important in my life has to do with the story of us – from the tingly numbness in her hand thirteen years ago to the depression and sleep disorders she experiences now. I don’t like it, but I wouldn’t trade it for anything. RSD is a part of our story together, so in a weird way, our life wouldn’t be our life without the struggles we have faced together. Don’t get me wrong, if she were to be cured tomorrow, I wouldn’t complain a bit.
