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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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| ... that we had our Christmas last night on Christmas Eve. We always do, because that's the time my family always did it, so that's the time my daughter gets with us even if she isn't spending the entire weekend. But this time, it was a good idea for another reason: that dang fatigue. Again.  After I took Tiffany home about 5:30 last night (we'd all opened our presents by then and she was going with her mom to the Christmas Eve service at her other church), we went to the Christmas Eve service at our church. I had to be there by 8:00 for the final rehearsal since I was playing my cello with the group this time, so we went early.Following that candlelight service, we were up till our usual time, just relaxing and watching a little of the seasonal things on TV, then the news. By then I was starting to shut down, and I knew it. I headed for bed. Kenzie came to bed a little earlier than usual, but not by too much. Thing is, getting to bed relatively close to our usual times didn't help us this morning. We'd planned on sleeping in a bit, but only I got to do that. Our new kitten (yes, we got one for Christmas, hoping it would also help our current cat in both keeping occupied and learning a few things she doesn't seem to know on her own - that's another story) came in and woke us up about 7:00 AM. Problem is, even though we both tried to distract her a bit, she kept playing with Kenzie long enough that Kenzie became fully awake, and when that happens she can't go back to sleep. I got up about 9:30, and among other things Kenzie and I watched a few special Christmas shows to somewhere about 12:30. Problem was, the fatigue kicked in and we both fell asleep in the middle of them, sitting in our comfy chairs in the living room. . When we finally woke up, we chalked it up to the gloomy weather outside - cold, cloudy and definitely rainy; the weather recipe that almost always makes for a lazy day. It sure did for us! Kenzie's hurting as usual, that's a given. And at least my legs haven't started to hurt TOO much yet, they're just beginning to as I write this. Obviously we'll have to wait and see what the rest of the day brings for both of us. |
| ... for the fatigue part of Fibro to take its toll. Again. We actually had some fairly normal days since my last entry. I say fairly because I have to always allow for the fact that both Kenzie and I are in constant pain of some sort, her much more than me. But outside of that fact we had some fairly normal days recently, until this weekend. I practiced with the praise band at church Saturday morning after getting my cello back from the shop a couple days before. I'd only had a couple hours to practice Friday night, and it showed. I have a long way to go to get back in the swing of things. But with it strung backwards now, to accommodate my CP, I can really get going if I can find the practice time. I'm hoping to be back up to speed by Christmas Eve but I may not make it. Anyway, I digress.After the rehearsal ran a bit over, to about 1:00 P.M., I came home, and after a small bite to eat, realized it was MY turn to shut down for a while. I hit the bed about 2:15, and didn't wake up till the phone rang at about 5:30. Good timing. I wanted to be up for the news at 6:00 amyway. Good alarm clock. When I awoke, however, I realized that the Fibro Fog had struck again. I suddenly remembered that I had had an eye exam scheduled for 12:15 P.M. to check on the pressure. With blindness being a possibility with diabetes, my eye doctor is right on top of things, and checks the pressure in my eyes about every three months to make sure the drops he has me using continue to do their job. Now I have to reschedule that appointment. And it's going to be fun trying to get it in before Christmas. AND - that nap kept me from looking for the outside Christmas lights and getting them put up. Sheesh. And from practicing. Oh, brother! Such is life with Fibro and the fatigue that comes with it. Today, Kenzie and I went to church, then made a brief visit next door, for a birthday party for a former neighbor's 1 year old. When we got back, Kenzie sat on the porch a bit while I picked up the last of the leaves in the front yard. By the time I'd done that, she'd gone inside. When I came in I didn't see her right away. She wasn't at her PC in the kitchen, nor in the bathroom. That's when I looked in the bedroom, thinking she was napping. She wasn't there either. But I was half right, just didn't know it yet. As I went back into the living room on my way to taking a couple boxes of cassette tapes to the basement, I saw her - asleep in the recliner. I thought it would happen sometime soon; she'd been working hard on cleaning the kitchen the last couple days as well as everything else I mentioned here, and I had figured it would come at some point, just wasn't sure when. This afternoon I found out. It's 5:25 PM now, and the children's play at church is at 7:00, so if she's not up by about 6:15 I'll have to wake her up and see if she still wants to go. We decided at church this morning that we would go, but we never know what Fibro will pull on us. So we'll see how the evening goes. As for the outside lights, I haven't found them yet, and knowing they're here somewhere I hesitate to spend the money for a whole new set. So, we'll see how that goes in the coming week, too. Hope all of you are as healthy and happy as you can be going into the final week before Christmas. May the Lord bless all of you and yours not only at this time, but year round. And, for my Jewish friends, Happy Hannukah! See you all here again soon. |
| The Fibro struck again this evening. Yes, it's with us 24/7, but once in a while it makes its presence even more obvious. And tonight, when it did, it brought Kenzie and I another verbal classic for our "collection". She knew about 8:00 that she was going to "shut down", as she and I refer to the act of basically falling asleep at a time when it normally doesn't happen, yet you know it will and you are helpless to stop it. She managed to stay awake long enough to eat supper, but shortly thereafter, about 9:00, she changed into her nightgown and hit the sack. When I leaned down to get an early goodnight kiss, she turned toward me, and I knew for sure it wouldn't be long. Her eyes were half open, half closed. It was when I pointed that out to her that she came up with her latest unplanned verbal gem: "Honey, I can tell it's not going to be long before you fall asleep. Your eyes are half shut now." "So's my head." We both lost it, of course. She laughed as heartily as always, but you wouldn't know it from her body motions. Other than her wide open mouth and happy, squinting eyes, hardly any other part of her was moving. That's how tired she was. And that "So's my head" line only serves to prove the truth of her statement. As I write this she's out like a light and will likely sleep longer than her usual 5-6 hours. How long? Sorry about the pun, but um... only tme will tell. We'll know sometime tomorrow. |
| Yep, even with timing being a bit off for when my daughter would be here this weekend, Thanksgiving still took its toll. Especially on Kenzie. I picked up Tiffany at 11:00 Thursday. We picked up two DVDs, one she wanted ("The Addams Family"), one I wanted ("Cars"), came back home, and watched "Cars". I'm going to watch it again this weekend just for me. We had some lunch from a local restaurant, then I had to have her back to her grandparents at 2:00. Kenzie had started on the Thanksgiving dinner while Tiffany and I watched "Cars". I helped her with the turkey preparation in a couple areas where she was having trouble, but other than that she did it all, and did it her way. She enjoys that and I wasn't about to take any of that away from her. A while after supper, as I was watching TV in the bedroom while checking email, she came in and laid down to rest her back and legs. They were all hurting. One leg had a shooting pain in the front and pins and needles in the back of it. Both feet had the pins and needles on the soles. After a short while talking as we watched TV, she fell asleep. It was about 8:30. She didn't wake up until around 6:00 A.M. or so this morning. THAT'S a bit of fatigue. Then today I picked Tiffany up at her grandparents again, at 1:00 P.M. She, Kenzie and I ate lunch at Taco Bell then toured a local botanical conservatory. Plants and trees from all over the world in native-climate controlled areas. Including a rain forest. I'd wanted Kenzie to see the Krohn Conservatory for a long time. We hadn't been there since she came here and they have the indoor part of their Christmas display up. The outdoor part, a live Nativity scene, opens Dec. 1st. Tonight Tiff's playing with a friend. Tomorrow we'll probably watch The Addams Family in the morning. I have to have her at her aunt's by 2:00 for their Thanksgiving get together. Today is working fairly well for both of us overall. The Conservatory visit meant quite a bit of walking, but I think Kenzie enjoyed it. We'll both have to see what the rest of the weekend brings. Here's hoping all of you had a wonderful Thanksgiving! |
| Looks like we can forget what I said about my back. It's killing me now. I've been off my feet most of the time since getting back home at 5:30, and it only recently began hurting that badly, as the leg pain has gone the other direction and started to subside. That's when I remembered something Kenzie had said occurs with Fibro: we can have more than one pain, but often with Fibro the worst pain will mask the others. So my back quite likely was hurting for a lot of that trip, but I couldn't tell it till the very end because the leg pain was covering it up as far as my brain was concerned. Cute. That gives Kenzie and I one more Fibro symptom in common that I don't think I had felt before. One of our inside jokes with each other is the idea that I am slowly catching up with her on the Fibro activity. This situation seems to substantiate that idea. We'll just have to see what the future brings. Again. |
| ... about the back not hurting. I left here for Kroger about 3: 30. I arrived there on foot at 4:15. By the time I had gotten the shopping done and got back home, it was 5:30. Two hours on my feet. My legs were hurting more than they had in a long time. THAT I expected. They hurt all over, but especially on the inside of the thighs. But my back didn't really start acting up until I had only about 6 blocks to go till I got to my front door. So, it's a different way to find out, but I suddenly remembered that how badly my back hurts depends on more than the time on my feet. The terrain I'm crossing has a lot to do with it. Duh. LOL. When my dad and I visited Chicago a few years ago by train, everything we did was within walking distance of the hotel. My back killed me those three days. But 99% of the walking was on concrete. Today, at least a third of the terrain was grass. So the Fibro got the legs (it hadn't made itself known that strongly in my life when we took that Chicago trip so that wasn't a problem), but I must have had enough soft terrain under my feet to keep the back from hurting as much as usual. What a relevation! |
| Now that I know a lot more about the Fibromyalgia that Kenzie and I have, it sometimes makes me wonder if MY periodic back pain is due to the Fibro, or an actual problem. I've had one form of it off and on for years. It kicks in when I've either been standing in one spot too long (1/2 hour max on that one), or walking too long (that one takes up to 1 1/2, maybe 2 hours). But then, once in a while I'll get it in another spot. An unfamiliar one, as Kenzie has been doing on occasion recently. And I try to figure out - fibro or problem? There's no way to really tell without getting it checked out. Sheesh. This morning, though, I was doing the dishes. Like all couples should be, she and I are a team. And with her in Michigan for a few days, this task falls in my court. But that meant standing in one spot - in front of the sink. (Yes, we need a dishwasher, but the kitchen design doesn't leave room for one without giving up already valuable cabinet space. We're working on that. The house was built about 1960 and the kitchen was both poorly designed - my opinion - and never updated by any previous owners. The combination makes the concept of updating a daunting task.) So, I stood in that spot and went to work. Sure enough, somewhere within that 30 minutes, my back starts to hurt in a very familiar spot. Waist high, on the left side. So, Im making use of the "recovery time" sitting down and making this entry. This afternoon should be an interesting challenge, too. With Kenzie in Michigan, and our other car in the shop, I'll get to walk to Kroger's and pick up my prescription refill. I figure it's about 1/4 mile, maybe a little less. I doubt it will take me so long that the back kicks in again, but we shall see. I'll try to report back later today on that one. |
| Yep, that's what I said. My legs have been bugging me since about 11 this morning, and if I sit "too long" without getting up and working them, my knees add their little 2 cents to the arguement. Trouble is, that 2 cents feels like a lot more than that. And the fatigue is starting to show itself when I try to sit and study for an insurance test I have coming in a couple weeks. Thankfully the chapters are usually only around 15-22 pages each (so far) and I can usually get through one and take the practice quiz before I get noticeably "tired". But not always. And I'll have to do more reading and quizzes in the remaining days if I don't stay on schedule. Sheesh. Kenzie's doing pretty good so far today. She's been working online for a good bit, and has yet to run out of energy today. I hope that keeps up, though she'll possibly "crash" earlier than usual tongiht as a result of it. But with Fibro, we never know for sure. All I'm doing is going by past experience. Personally I'll likely be pretty worn out by the time we take my daughter to Bob Evans for a birthday dinner, then she and I go to a movie at 9:15. It'll be about 11:30 or midnight before we get home, and that's about the time I run out of energy myself. Obviously, we'll see. |
| Yep, that's what I said. My legs have been bugging me since about 11 this morning, and if I sit "too long" without getting up and working them, my knees add their little 2 cents to the arguement. Trouble is, that 2 cents feels like a lot more than that. And the fatigue is starting to show itself when I try to sit and study for an insurance test I have coming in a couple weeks. Thankfully the chapters are usually only around 15-22 pages each (so far) and I can usually get through one and take the practice quiz before I get noticeably "tired". But not always. And I'll have to do more reading and quizzes in the remaining days if I don't stay on schedule. Sheesh. Kenzie's doing pretty good so far today. She's been working online for a good bit, and has yet to run out of energy today. I hope that keeps up, though she'll possibly "crash" earlier than usual tongiht as a result of it. But with Fibro, we never know for sure. All I'm doing is going by past experience. Personally I'll likely be pretty worn out by the time we take my daughter to Bob Evans for a birthday dinner, then she and I go to a movie at 9:15. It'll be about 11:30 or midnight before we get home, and that's about the time I run out of energy myself. Obviously, we'll see. |
| The title says it all for us for the last couple weeks. My legs have been bugging me most of my waking hours the last couple weeks.They would start slowly, picking up the pace as the day progressed. Many days, just walking around the office was highly uncomfortable by the end of the workday. Sometimes I'd have a pain shooting down the outside of one leg or the other with each step I took by the time I was heading for home. And I would definitely need the Naproxen in addition to the Nortriptylene before I went to bed. Kenzie's problems seemed concentrated in her stomach and back over the same period. A few days she couldn't find anything to eat that didn't end up setting off her stomach. Even one of her favorites, a baked sweet potato, bothered her stomach so long she was late getting to bed that night. And a sweet potato obviously shouldn't do that. What a place for the Fibro to hit. {indent{And one night this past week, the stomach was keeping her up again, so she sat down in the recliner to watch a bit of late TV while waiting for it to calm down. I woke up at 2:00 AM and found her asleep in the recliner, almost but not quite in a fully reclined position, laying on her left side as usual. Turns out that was the one thing that was a positive result of the situation. She told me the next day that sleeping like that did get rid of an unusual kink she'd had in her back the day before. It all comes down to one basic fact: Fibro has a mind of its own, and every day for us will continue to be unique in some way. We've found only one real constant so far, and it's one that is common to most, if not all Fibro patients: Weather changes are a dreaded enemy. Our weather changed two or three times this last week to ten days. From sun to rain, from upper 60's to upper 30's for highs, and back. A weather roller coaster. Each change managed to set off the Fibro in one form or another. My legs are already at it today, albeit mildly. We'll see what happens later on, but I think I know the outcome on this one. We'll see if I'm right. |
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