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This will show our fight with Fibromyalgia, so others can learn that it's real. |
This blog will chronicle my battle with Fibromyalgia, sometimes comparing it to the battle my wife, Kenzie  has with the same illness. Many don't believe it's an actual illness, though its existence is recognized more and more in the medical community. I'm hoping that by shedding some light on what it can do to a person we can make others aware that it is indeed real, and that it can hit anyone of any age at any time. It's not deadly, by any means, but it can drastically change your life. It can be a real and aggravating pain in more ways than one (pun intended). MANY more ways.
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| Yep, you read it right. At least for the recent past and current time, a few of my Fibro pains are predictable, at least the location and timing. They may also hit me when I'm not expecting them as always, but I have learned that a number of certain activities will almost certainly trigger certain ones that can last quite a while. Two examples, but a moment of background on one first. My father and I rebuilt the old roll-driven player pianos as a bobby for 17 years. From 1963 till 1980. On a pretty large scale. In 1972, while we were still learning a few things about rebuilding the specialized devices that were part of the baby grand players, we had an opportunity to buy an UNrestored 1925 Steinway Duo Art reproducing baby grand player. Since we only felt confident rebuilding certain parts of the grand mechanisms at that point, and certainly didn't want to ruin such a valuable instrument, we had it rebuilt by a gentleman who'd been doing it full time for over 30 years so we could enjoy listening to it while learning the rest for ourselves. The gentleman's name was Harry Garrison. Dad and I dealt with Harry a number of times over those 17 years, but not too recently. Now back to the present. Example 1 of those pains. I got a call from Harry Garrison on my cell phone this afternoon. Getting a call on a cell phone is common these days, that's not the point. The thing is, Harry and I talked for a half hour straight at that point. And it just so happens that I was walking the cat when he called (yes, the cat - Piwacket - not Jake the dog), so I couldn't switch hands off and on with that phone. When we finally finished, the muscles on the inside of my upper right arm were killing me. They'd been under steady tension holding that phone, with no relief for half an hour. And they let me know it. Every time I would extend my right arm, those muscles would scream. They did that for about 6 straight hours before backing off. Example #2. That busy day today. Follow me here LOL. Got up at 6:30. Tiffany and I had to be in Williamsburg, a good drive east of here, by 8:30 for her 9:00 AM soccer game. They won 3-2, by the way, and Tiff had two of those three goals. I was proud of her for that kind of play, but I was even more proud of how she handled something else during that game. At one point, she got hit in the stomach with the ball, which had been kicked by an opposing player from only about 3 or 4 feet away. It hit Tiff full force in the stomach, knocking the wind out of her. But, she got up after only about 30 seconds, took a couple deep but stinging breaths, and got right back into the next play. I admire her even more for that kind of sportsmanship. After that game, we came back home, picked up a good friends of Tiffany's, Taylor, and the three of us went to the local amusement park, Coney Island for about 4+ hours. The Coney time was all free because today was my company's family day at Coney. Tiffany and Taylor had a ball. For me, it was fun watching them, but it was a lot of walking, and that's what would come back later to haunt me.  We left Coney about 4:30, heading home to pick up Kenzie and Taylor's sister Gracie, for a kickoff celebration for our church's latest project.Kenzie ended up meeting us there, but we all made it. That event started at 5:00, and ran till 8:30. After bringing the three girls home, I ran to the store for a couple things, and came home. As I write this, it is now 10:57 PM, and my legs have been killing me since we got home from church. Add to that the pain in my arm from that long phone call just came back as well. But, I'm not really complaining. Because I knew it would happen in some form with all the walking and other leg activity I had today. Because it's far more than a typical day would bring.But with the way Tiff, Taylor and I enjoyed Coney, the way she put all she had into that soccer game, and the importance of the time at church tonight in worship, I wouldn't change a minute of it. It's worth the pain in my legs to have had that time to share with them, and with Him. This one I did to myself, and I don't regret it. uring the course of a busy day today, which will be example number two, I got a phone call on my cell. |
| Consistency. Depending on the situation and the people involved, it can be a good thing, or a bad thing. Tonight's entry is an example of one of the 'bad' things about it. Yep, the Fibro. For the past week or so, I've been getting hit with the fatigue side of things a good bit earlier than usual. I used to be up till about 11:30 or so most nights. The last week or so, maybe about 10 days, I've been running out of gas somewhere between 9 and 10 PM most of the time, the latest about 10:30 or so. And on some of those nights it was so obvious that Kenzie mentioned it before I had said a word about it. She says I get this kind of 'glazed' look in my eyes when I'm about to shut down. Well, I'll have to trust her on that look - I've been too tired at those times to even think of looking in a mirror. But the way my eyelids feel at those times, I think I'd have to agree with her. Tonight's a perfect time for this entry - it's 10:15 PM and I felt myself starting to shut down about 20 minutes ago. So, I brushed my teeth, but I haven't made it to the shower yet. That may have to wait till tomorrow. Not sure yet, but either way, that's it for tonight. I need to save this entry before my shut down process doesn't give me a chance to do it. Later. |
| ... how much you're thinking of others. It'll take any chance it can get to make you miserable. This entry is my offering for proof of that concept. I attended a Catholic funeral service this past Monday morning for the sister of a co-worker. More on that in my other blog, for a different reason. The service was wonderful. No question of that. The problem was that I, and the coworker that I rode to the church with, arrived only a couple minutes before the start of the service. That was OK in that we didn't miss any of it. But the sanctuary was PACKED. Which means that the two of us, along with others we didn't know, ended up standing for the entire 1 1/2 hour service. Thankfully, I had just purchased the shoes I wore that day. I hadn't had time to wear down the heels any yet. That helped save my back. But, it's as if Fibro knows when you cover one of those many options. It takes a different turn every time you think you've held it at bay.  .Throughout the service, I kept changing the leg on which I'd put most of my weight, hoping that my back wouldn't start up. That's the first problem I saw coming. I wasn't too confident, at the time, that the shoes would prevent that altogether. Nice idea, but it backfired. While I never felt much pain during the service, it didn't take long as we turned to leave before it set in. I'd forgotten that my left leg isn't used to taking on the weight as often as my right. I"ve probably favored that one over the years without thinking about it, at least to some degree, due to that touch of Cerebral Palsy over on that side. As my coworker and I left the sanctuary, my left leg quickly became covered, all over, with the fire, the burning sensation Kenzie has often mentioned in her blog. And the farther I walked toward our vehicle, the more it burned, and the more the muscles in BOTH legs began getting stiff, as though they'd all been over exercised. I was walking like a 90 year old man by the time I reached my coworker/driver's SUV. And it took most of the rest of that day, till about 8:00 Monday night, before my legs had calmed down to any noticeable extent. Needless to say, I took a Neproxen along with my other medications Monday night. This morning, thankfully, the pain was virtually gone. Until next time, that is. |
Kenzie, not me. She gave the sermon at church this morning. I'll let her elaborate on that, and the service in her blog; but the two things I can vouch for here are that she did an excellent job  , and that the excitement, the nervousness and standing for that length of time - about 30 minutes continuously each service - all combined to drain her energy. She snoozed from about 1:30 P.M. till the phone rang about 3:00 P.M., then again from about 5:00 until who-knows-when (she's still sleeping as I write this - it's 9:15 and Derek doesn't work tonight). She'll likely apologize later or tomorrow for not spending the evening together, or the night (she may wake up about 1:00 AM, the time she normally comes to bed, and be up the rest of the night after all this sleeping), and that's fine. She and I agreed long ago that neither one of us HAD to apologize, but we could if we'd feel better. And, usually, we both do when we feel the need, knowing the other understands. All that sleeping only serves as another example of the way the chronic fatigue part of Fibro can play havoc with your life, including your daily routines and plans. And if she does wake up about 1:00 and stay up, that only adds to the example. Bigtime. And me? I wasn't immune to the same problem. I was dozing in my rocker the first time she slept, and the phone awoke both of us. And while she stayed up between 3:00 and 5:00, I was still dozing in that rocker. And I didn't like it. I liked the relief the sleep gave from the aches of Fibro, but not what it did with MY plans, either. And don't forget that no two days are ever the same. For either of us. But I think she'd also agree with the idea that doing that sermon was worth it. And she'd be right. |
| Kenzie and I both joined with other members of our church, and marched in the Anderson Township 4th of July parade this afternoon. I walked the roughly quarter mile (my estimate) with other church members, passing out ice cold water to many parade watchers on the sideline. (In all, the church passed out 2200 16 oz. bottles of water.) Kenzie rode in the passenger seat of one of our two trucks, the one pulling our church's float (we won the "Most Spirited" award this year, the one our pastor was hoping for). After the parade, we joined other members at one member's home for a cookout. About 3:30 PM, Kenzie said she was starting to shut down, so we gave our thanks to the hostess, left the cookout and headed home. By 3:45 or so, Kenzie was in the bed, out like a light. I went into the living room to watch a show I'd taped some years ago, and ended up dozing in my rocking chair. At 5:00, I switched to watching the local news since I don't get to see that first 1/2 hour of it when I'm heading home from work. I started watching that tape again at 7:00, after the network news. At 8:00, I went in to wake Kenzie so she had time to wake up before taking Derek to work. She said she was getting up, so I went back to the living room. Later on, after Derek had gotten up, Kenzie came into the living room on her way to the kitchen for coffee, and said that Derek had stuck his head in the bedroom and said, "Mom, you do know I work tonight, right?" She said yes, and asked him the time. "It's ten minutes to 9." She had slept from about 3:45 to virtually 9:00. I'd slept from aout 3:45 to almost 5:00. And when she left to take him to work, I brought the trash can back from the curb to behind the house, brushed my teeth and hit the shower, intent on going right to bed myself. That is exactly what my energy level felt like. As you can see from the time on this entry, I didn't make it. But I decided I wanted to get this entry in while it was fresh, to show that the Fibro, and its related fatigue, can get to either, or both of us, at anytime. I just yawned so I think I'd better listen to my body this time since I have to work tomorrow. See you all next time. |
| Both yesterday and today, I've ended up taking a nap. Saturday's was longer than the one this afternon, but both were something of a surprise. The thing is, I can't really tell wheher it was fatigue from the fibro, or a result of my allergies that brought them on. I say that because my former ear, nose and throat specialist (now retired), said that the fact that my energy disappears when I spend a fair amount of time in the sunlight is part of my allergy situation. Yesterday, it was cutting the grass. And that time in the sun was longer than this afternoon, when I took the cat out for a half hour walk. So that made sense to me that yesterday's nap would be the longer of the two. Problem is, that doesn't help me figure out which reason was behind the naps. It has me LEANING toward the allergy reason, since each enounter was immediately after being in the sun, and since I don't run into the same problem when I'm at work and indoors all day, but there's nothing definitive. And it could have been a combination. At this point, there just isn't enough evidence on either side to know for sure. Actually, it would be nice to knw which one, for future predictability, but the bottom line is the same in either case - I still have to deal with the need for the nap. Thankfully, to this point, it's always coming on the weekends, not the weekdays. Praise the Lord for that! |
| Yep, at least within the last 48 hours or so it's been consistent. But I could also say that within that time frame the fibro has also been basically nonstop. Sheesh. Sometimes it was all of them, sometimes they took turns, but sooner or later my legs, my knees, my elbows and my back all got their 2 cents in. And a few times the night before last I got hit with another new pain: every once in a while it felt like I was being stabbed - now get this - on the INSIDE edge of my left foot, right in the center of the arch. THAT hurt. But, being as used to the fibro as I am, I didn't panic because I knew where it came from. It just hurt like crazy. So far today, it's been the same mix, although it's more back and legs than knees right now. I just finished cutting the grass, and that may be why. We'll just plain have to see what the rest of the day brings. |
| Kenzie , in her blog entry for Sunday, 6/24/07 at 1:36 AM, commented on the fact that it looks like taking the three flights of stairs from the movie theater to the parking garage Friday night set off one of the worst bouts of Fibro she's had since being here. I did those same stairs. For the exercise, yes, but also to be ready to help in case one of her knees gave out on her, or something else made it too difficult for her to finish those stairs. I did it out of love, and I'd do it again. But we both paid for doing the stairs. My end? By the time I went to bed Friday night my legs were already killing me. They didn't wait till the next morning. But what I DID expect also came true - that next morning was even worse. Like Kenzie, my symptoms multiplied overnight. Saturday I had my legs, my knees, my ankles, my back and my elbows all yelling and screaming at once. It hurt to walk, but even getting off my feet was no help. All those areas kept throbbing, or simply refused to back off their constant pain. Sunday was a LITTLE better for me, thankfully, and improvement continued today, though I'm not through with recovering. Still, I'm a world ahead of Kenzie in recovering. She slept in her recliner in the living room last night because the angle of the recliner tends to take some of the pain away from her back. And everything still hurts her tonight. Hopefully it will back off soon. Obviously we'll both find out if anything has changed in the morning. |
| ...now ends up giving me quick Fibro pain. The scenario: I had someone who recently won a Steinway player grand similar to mine at an auction come to see mine this afternoon. I took a half day of vacation to demonstrate it for him. He was originally looking at buying mine till he won the other one. But his has some problems. The restoration done on it was half-baked. Not done properly in at least two key areas. So he wanted to hear mine to see what his SHOULD be doing, and to be able to give a friend of his an accurate "pep talk" about buying mine for himself. Part of our discussion meant crawling underneath the piano and watching the motion of the parts of the mechanism most critical to recreating the live performance done by the artist. We were crawling around under there about 10 minutes. But within about 10-15 minutes after we finished that crawling and got back on our feet, my legs and back started killing me, and they're still going at it. My bet, after talking things over with Kenzie, is that if I was still doing this on a daily basis like I was years ago with dad on evenings and weekends, that the Fibro pain wouldn't be nearly as bad. Kenzie had read something recently that CONSISTENT exercise, over time, can make the pain of Fibro back off. I don't have the space to get back to working on these consistently right now, but that would be one way of getting consistent exercise that I wouldn't hesitate to take advantage of. I'll be helping Philip Chang, the gentleman who came this afternoon, get his working properly, but that won't be consistent exercise because it won't be daily or weekly. It'll be sporatic because of his unusual work schedule and days off. So for the moment I think I'll start getting back to nightly walks, and maybe a bit of bike riding as many evenings as the weather will allow. Then I'll work the piano work into things as I can. We'll see if I can manage to prove what Kenzie read. This one will take some time, so there will likely be a good number of entries here in the meantime. But when I reach a point of seeing some results, in either direction, I'll let you know. Any questions, ask. And please keep those prayers going about our finding a sale for the piano. That would still be a big help to us. As soon as the news goes off I'm going to take that oversize walk "around the block" for about 1/2 hour. See you all next time. |
| Yep, for the last two days, I've felt more of the fatigue from Fibro than I usually do. Thankfully most of it has come in the evenings, after I got home from work. I felt the initial stage of it about mid afternoon both days, but only enough to know that it was coming. By the time I got home from work on both of these days, I was moving pretty slow. As I type this I'm contemplating getting my shower while Kenzie takes Derek to work, and going right to sleep. And it's only 9:50 P.M. I guess we'll see. I have a fair bit to catch up on here, so we'll see how far I get tonight... |
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