Here is a blog posting from the spouse of a fibromyalgia patient. His name is Larry Payton and his wife is fortunate to have an understanding husband, something for which I have also been blessed with.Thank you John for being a wonderful, understanding fibro spouse.
Married to Fibromyalgia: Lessons Learned the Hard Way
For all the information currently available about fibromyalgia, relatively little exists for fibromyalgia spouses. This is unfortunate, since I know that even the strongest of marriages will be tested when faced with fibromyalgia. Most of what I know about being a fibromyalgia spouse, I’ve had to learn the hard way. So, in the interest of helping others avoid my mistakes, I’ve recounted some of the lessons I have learned, in roughly the order I have learned them.
Lesson One: I Can’t Feel Sorry For Myself
As it slowly dawned on me that my wife’s condition would be permanent, and that our lives would not go back to how they had been pre-fibro, I began to feel cheated. My wife and I had always enjoyed being outdoors and active, and a large part of our relationship was based on these common interests (our first date had even been a canoe trip). It looked, now, like these things were gone for us, and that was just the beginning of the changes. Vacations, retirement plans, social engagements- everything had been thrown into a state of chaotic uncertainty.
At first, I think I was stunned by the sheer magnitude of changes that fibromyalgia meant for us, and I felt pretty sorry for myself. My wife’s fibromyalgia had been triggered by a rather serious illness, so for a long time afterward I kept hoping that she would “snap out of it” and be herself again. I know I brooded for quite a while before, finally, accepting the fact that there was no going back. Life had changed. All that was left was to decide what to do about it. This was probably the toughest, and most important, lesson I learned. Everything else I know about coping as a fibromyalgia spouse has flowed from the realization that I can’t afford to feel sorry for myself. I know that many spouses can’t manage to get to this point, and I can only say that for me, I really meant it when I said “for better or for worse.”
Lesson Two: We Need A Plan
Lesson two followed lesson one almost intuitively. Once I accepted that our lives had permanently changed, the next logical question was, “What do we do now?”
Had we not been able to establish new goals together as a couple, I’m sure our marriage would have fractured. Our relationship certainly couldn’t have grown, and in my experience, stagnant relationships don’t last long. We had to take a sober look at what was possible and adjust our long-term goals right along with our daily goals. Doing this brought an enormous about of stability back to our lives, but as I would learn, we still had a lot of adjusting to do.
Lesson Three: Appearances Can Be Deceiving
Some lessons I learned relatively easily, but not this one. I think it is because, unlike my wife, I could sometimes forget about fibromyalgia. For instance, I could go through a whole day of work scarcely thinking about it.
Eventually, though, I came home and if I didn’t quickly remember, I was setting myself up for another tough lesson. Many times, early in her illness, I made the mistake of assuming she felt fine, and she, having been suffering in silence for hours, directed the full force of her pain and frustration at me.
It probably took me longer than it should have, but eventually I learned that fibromyalgia doesn’t look like anything, and even though my wife might appear tranquil, she could be hurting and just barely keeping it together on the inside .
Lesson 4: It’s Not Personal
When, because of my insensitivity, these types of confrontations did occur, I almost always felt blind-sided, because I really didn’t anticipate them. I wasn’t living with fibromyalgia 24 hours a day, so to me her outbursts appeared excessive and irrational. I usually left these situations feeling hurt and more than a little confused.
I felt discounted in other ways, too. Sometimes, I would notice a blank look on her face when I would be talking to her, like she was deep in thought about something much more interesting than what I was saying. Other times, she would go to bed as soon as I got home from work, making me think she would have been happier if I had just stayed there.
I know, now, that these actions were not directed at me personally. The glazed look wasn’t because she was ignoring me; it was because she was having trouble focusing. She didn’t go to bed early to avoid me; she went to bed early to avoid lashing out at me. Knowing these things doesn’t fix everything, but it does help to keep them in mind, especially when I’m feeling neglected.
Lesson 5: Communication Makes Life Easier
One of the smartest things I’ve learned to do since my wife’s illness, whether it’s first thing in the morning or when I get home from work, is to ask her how she is feeling before I say anything else. Sharing this little bit of information has saved us much anguish. It is so much easier for her to tell me how she feels than it is for me to guess (I’m usually wrong). This goes back to the “Appearances Can Be Deceiving” lesson.
Lesson 6: Sometimes I Need to Leave
Sometimes her answer to, “How do you feel?” is a forced, “I hurt,” between clenched teeth. I’ve learned that during these times life is easier for both of us if I make myself scarce. I’m not saying I leave the county or anything, but I might find something to do in the garage for a while. I’ve learned that retreat can be a wise strategy.
Lesson 7: I Have To Slow Down
Learning to live at a pace that is comfortable for my wife has been surprisingly challenging. Slowing down means not only doing fewer things in a day, but also, doing those chosen things at a slower pace. I’m learning to walk slower, to talk slower, and to eat slower. I’ve learned that if we go at her pace, we get to enjoy a lot more of life together.
So, that’s it: seven hard won lessons. Of course, I still need to be reminded of these lessons myself periodically. I’m quite capable of falling into periods of self-pity, and I still can be dumbfoundingly insensitive to my wife’s condition. I don’t know if I’ll ever really be able to eat slower, but I do know I’m learning to be a better fibromyalgia spouse.
For all the information currently available about fibromyalgia, relatively little exists for fibromyalgia spouses. This is unfortunate, since I know that even the strongest of marriages will be tested when faced with fibromyalgia. Most of what I know about being a fibromyalgia spouse, I’ve had to learn the hard way. So, in the interest of helping others avoid my mistakes, I’ve recounted some of the lessons I have learned, in roughly the order I have learned them.
Lesson One: I Can’t Feel Sorry For Myself
As it slowly dawned on me that my wife’s condition would be permanent, and that our lives would not go back to how they had been pre-fibro, I began to feel cheated. My wife and I had always enjoyed being outdoors and active, and a large part of our relationship was based on these common interests (our first date had even been a canoe trip). It looked, now, like these things were gone for us, and that was just the beginning of the changes. Vacations, retirement plans, social engagements- everything had been thrown into a state of chaotic uncertainty.
At first, I think I was stunned by the sheer magnitude of changes that fibromyalgia meant for us, and I felt pretty sorry for myself. My wife’s fibromyalgia had been triggered by a rather serious illness, so for a long time afterward I kept hoping that she would “snap out of it” and be herself again. I know I brooded for quite a while before, finally, accepting the fact that there was no going back. Life had changed. All that was left was to decide what to do about it. This was probably the toughest, and most important, lesson I learned. Everything else I know about coping as a fibromyalgia spouse has flowed from the realization that I can’t afford to feel sorry for myself. I know that many spouses can’t manage to get to this point, and I can only say that for me, I really meant it when I said “for better or for worse.”
Lesson Two: We Need A Plan
Lesson two followed lesson one almost intuitively. Once I accepted that our lives had permanently changed, the next logical question was, “What do we do now?”
Had we not been able to establish new goals together as a couple, I’m sure our marriage would have fractured. Our relationship certainly couldn’t have grown, and in my experience, stagnant relationships don’t last long. We had to take a sober look at what was possible and adjust our long-term goals right along with our daily goals. Doing this brought an enormous about of stability back to our lives, but as I would learn, we still had a lot of adjusting to do.
Lesson Three: Appearances Can Be Deceiving
Some lessons I learned relatively easily, but not this one. I think it is because, unlike my wife, I could sometimes forget about fibromyalgia. For instance, I could go through a whole day of work scarcely thinking about it.
Eventually, though, I came home and if I didn’t quickly remember, I was setting myself up for another tough lesson. Many times, early in her illness, I made the mistake of assuming she felt fine, and she, having been suffering in silence for hours, directed the full force of her pain and frustration at me.
It probably took me longer than it should have, but eventually I learned that fibromyalgia doesn’t look like anything, and even though my wife might appear tranquil, she could be hurting and just barely keeping it together on the inside .
Lesson 4: It’s Not Personal
When, because of my insensitivity, these types of confrontations did occur, I almost always felt blind-sided, because I really didn’t anticipate them. I wasn’t living with fibromyalgia 24 hours a day, so to me her outbursts appeared excessive and irrational. I usually left these situations feeling hurt and more than a little confused.
I felt discounted in other ways, too. Sometimes, I would notice a blank look on her face when I would be talking to her, like she was deep in thought about something much more interesting than what I was saying. Other times, she would go to bed as soon as I got home from work, making me think she would have been happier if I had just stayed there.
I know, now, that these actions were not directed at me personally. The glazed look wasn’t because she was ignoring me; it was because she was having trouble focusing. She didn’t go to bed early to avoid me; she went to bed early to avoid lashing out at me. Knowing these things doesn’t fix everything, but it does help to keep them in mind, especially when I’m feeling neglected.
Lesson 5: Communication Makes Life Easier
One of the smartest things I’ve learned to do since my wife’s illness, whether it’s first thing in the morning or when I get home from work, is to ask her how she is feeling before I say anything else. Sharing this little bit of information has saved us much anguish. It is so much easier for her to tell me how she feels than it is for me to guess (I’m usually wrong). This goes back to the “Appearances Can Be Deceiving” lesson.
Lesson 6: Sometimes I Need to Leave
Sometimes her answer to, “How do you feel?” is a forced, “I hurt,” between clenched teeth. I’ve learned that during these times life is easier for both of us if I make myself scarce. I’m not saying I leave the county or anything, but I might find something to do in the garage for a while. I’ve learned that retreat can be a wise strategy.
Lesson 7: I Have To Slow Down
Learning to live at a pace that is comfortable for my wife has been surprisingly challenging. Slowing down means not only doing fewer things in a day, but also, doing those chosen things at a slower pace. I’m learning to walk slower, to talk slower, and to eat slower. I’ve learned that if we go at her pace, we get to enjoy a lot more of life together.
So, that’s it: seven hard won lessons. Of course, I still need to be reminded of these lessons myself periodically. I’m quite capable of falling into periods of self-pity, and I still can be dumbfoundingly insensitive to my wife’s condition. I don’t know if I’ll ever really be able to eat slower, but I do know I’m learning to be a better fibromyalgia spouse.
No comments:
Post a Comment