A Spouse's View of Fibromyalgia - Part 4 of Our 10 Yr Anniv Series

Continued from yesterday...

All this leads up to where we’re currently at, which is dealing with fibromyalgia…by exercising. It sounds like a strange concept: use your muscles so your muscles and nerves don’t freak out all the time? You might even think that the exercising may actually increase the fibro pain. So far, the results (from what I gather from Rochelle) is that fibro flares become less frequent when she exercises often. Once she stops exercising for a week or two, the fibro kicks in again and it becomes tough to live with again.

Knowing all this, how has fibromyalgia changed my life? It’s…complicated. On the one hand, I feel as though I’ve had to love my wife more by taking care of her when she’s in so much pain she can’t move, especially when guests are arriving in a few days and the house is a mess. Fortunately, my parents raised me to take on chores at an early age…so chores aren’t a big deal. Doing the overwhelming majority of the chores is a different subject. The load was squarely on my shoulders. After Rochelle would apologize for her not being able to help out as much, I’d just say that when I was older, our roles would reverse.

Doing things is what comes naturally to me…and that might be a generalization of most men. We hear that something is wrong (a light bulb is out, the pilot light is out on the water heater, a spider jumped out at someone, etc) we want to fix it. The same is true when our wives have a problem: our natural tendency is to want to fix it. “Forget the explanation of how/why something happened…how can I fix it?” Imagine my world…hearing/seeing my wife in pain and not be able to fix her. Sure I can make her more comfortable…get a heating pad, do the chores for her, make breakfast/lunch/dinner, make her some cocoa, turn up/down the temperature, etc…but these won’t fix her. It’s a battle that continues to this day…one I’m not sure will ever completely end. But this is the lot that has been given to us. We try to make the best of it, but it’s a day-by-day, hour-by-hour struggle.

I've sometimes felt that I'm experiencing 'sympathy pains', even though that's a term that's typically talked about when someone is pregnant. However, that idea gets shot down. I sometimes battle with the notion of telling Rochelle of the pain that I have, because it can be seen as a comparison to her fibro pain. This comparison often causes friction between us, so I internally debate it before speaking. My biggest concern is that the pain I'm feeling could escalate into something more severe that I couldn't verbally tell Rochelle or any EMTs (if it got to that point) what's wrong with me.

I’m reminded of the Spoon theory that Rochelle blogged about a while back. It’s a very accurate description of what fibro does to someone. Sometimes, she wakes up in the morning and has 20 spoons…other times it’s only 1. We have noticed that adrenaline can delay the fibro pain (somehow adding spoons to her day), but once the adrenaline kicks off, the pain comes back (usually with a vengeance). Unfortunately, there are days that Rochelle will use her spoons on other activities (work, friends, family) and I get the leftovers, if there’s anything left at all. It’s tough to not feel jealous.

I’ve tossed around the idea that Rochelle should join a support group of some type. This idea hasn’t gone over very well, but I do think that her blog has been very therapeutic for her…to express what she’s feeling & to receive encouragement from others. To a certain extent, I think that spouses of someone with fibromyalgia should have their own support group. Why? Because the spouse is typically the one that gives support (emotional or physical) & encouragement to the one with fibro. I've found it hard to give encouragement, knowing that no matter how much Rochelle can endure the pain...it will more than likely never go away. At least when you're encouraging someone through weight loss, you can typically see results...not so much with fibro. How does one encourage someone to not give up, knowing full well that they will never succeed?

So the question that must be on everyone's mind is this: Would I have still married Rochelle had I known that Rochelle would get fibromyalgia? The answer is Yes. Obviously, there was no way of knowing that Rochelle would get fibromyalgia when we were courting or when we got married. Although the ideal situation is to not have this disabling situation, we've come to grips that this is our trial. We have been chosen to live with and deal with the pain that fibro causes so that others may see God glorified. He's the one that gives us our daily strength to press on. And press on we will...until He takes it away or until He comes back again.

A Spouse's View of Fibromyalgia - Part 3 of Our 10 Yr Anniv Series

As a part of our anniversary series leading up to our 10 year anniversary this Thursday, I thought it'd be nice to get Tim's perspective on life with Fibromyalgia. I really appreciated hearing his take on things, and I hope you will benefit from it as well. This is in two parts, next post coming tomorrow.

~~~~~~~~

Our 10 year wedding anniversary is coming up. Anniversaries tend to force you to remember how things were compared to how they are now. With that in mind, Rochelle asked me to write a few things about how fibromyalgia has impacted my life. It’s an interesting topic because I think that we all tend to focus on the subject that has ‘X-Y-Z’ syndrome/disease/etc…and forget about how having that thing effects others. But it does.

In order to see how things are now, it’s probably best to see where things were BEFORE fibro. When I met Rochelle (over 12 years ago), we were in our second year of college. I was a transfer from another college. We were both Communication majors, though somehow we didn’t end up meeting till spring semester (which is strange because of how small the department was in comparison to other schools). We began our courtship in April 1998, with the intention of marriage as an end result. Soon after, we were engaged, graduated from college and eventually married on June 24, 2000. Life…was grand.

Apart from being in an auto accident exactly one week from our wedding, the first few years together were simple and happy. We both started salaried jobs that we, for the most part, liked. We moved around a few times & eventually bought a home. Ah, the American dream…realized.

Then, out of nowhere, we started going through a streak of ‘bad luck’. Rochelle & I almost drowned in Lake Michigan from a jet ski accident, Rochelle had a big anxiety attack, we had carbon monoxide poisoning in our home, and Rochelle was in a car accident…all in a 4 month time span. Little did we know that the last event on the list would have such a lasting effect on us. This is the one event that we point towards as the beginning of Rochelle’s fibromyalgia.

It was a long/tough time figuring out what was going on. Rochelle was in pain…all over…all the time. No amount of Ibuprofen would get rid of the pain. Sure, the medicine may have decreased the pain some or maybe even dulled it, but it was lurking…just waiting to come back. So, we did what every red-blooded American would do in this situation. Go to the doctor? Nah…we surfed the web for an explanation. A few possibilities were given. We also went to the library to see if there was any more help there. Rochelle checked out a few books on fibromyalgia and began reading them. Although scared at what having fibromyalgia might mean for us, by far the greatest fear was not knowing what was the cause of Rochelle’s pain.

After all the reading was done, we pretty much had figured out that Rochelle did have fibro, but thought that we should get a doctor to verify it, so that we could attempt some sort of a drug treatment. Bear in mind that fibromyalgia was, at this point, still a syndrome that wasn’t overly accepted as an actual problem. Some in the medical field thought that it was more of a mental breakdown of sorts. Eventually we found a specialist that verified our fears…it was fibromyalgia.

The doctor prescribed a few medications. I was hoping for the best. To see someone in pain is one thing…to see someone you love in pain (and you can’t do anything to take away that pain) is another. Unfortunately, the medication didn’t help as much as we were expecting it to. Could we have taken a stronger dose? Sure. But the side effects on these pills made me wonder where the woman I married went. Rochelle was not herself and we yearned for her to be ‘back to normal’ (if there is such a thing). It got to a point where we scoffed every time there was a Lyrica commercial on TV: it may work for some (as they claim), but it didn’t work for us.

We were back at being frustrated…knowing what was wrong but having no means to get better. Rochelle continued her research and got countless pieces of advice from relatives and friends (most of the advice was not asked for, so I could sense the negativity that Rochelle had every time someone brought it up). I found myself also passing on suggestions to Rochelle (suggestions that I had either picked up from the web or from friends), only to be shrugged away. She was in a very hard place because she wanted everyone to know why she wouldn’t be able to do some things that she was able to do in the past…yet she didn’t want people to treat her like she was handicapped. It was a very thin line...one that I found myself very frustrated in determining what to do.

One of the things that made having fibro so tough was that the average person could not tell that Rochelle had it. Unlike most diseases and syndromes, fibromyalgia is one that in which the average onlooker can't tell that someone is battling. For example, you might be able to tell that someone has a sprained ankle when they start to walk...or be able to tell that someone has a type of cancer by their hair falling out. Unless the pain is so intense that she has to stop doing what she was doing, fibromyalgia was invisible to the average person.

To be continued….