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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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| The last 24 hours were one of the busiest time periods we've recently had. But it was all a great pleasure. Problem was, all that activity caused us to use up all our "spoons" and then some. But we both agreed it was worth it. It started with my daughter's soccer game at noon Saturday, which they won, 7-0. Literally right behind that, we went to a four-hour Praise concert at 4:00 PM, and listened to six different Praise bands from four local churches, including our own. Needless to say we enjoyed all the performances (and I'm being totlaly honest when I say our band was the best  ) Our band had performed last. By now it was 8:15 PM, and we headed home. But we were too keyed up to go straight to bed, as was Tiffany. I ended up going to bed about midnight (Tiffany had gone at 11:00). Marilyn hit the sack at 1:15. This morning, Marilyn got up about 5:45 to pick Derek up from work at 6:30. She got me up at 8:00, and got Tiffany up at 8:15 because we had to go to the early church service. No choice this Sunday because Tiff had a soccer game at 1:00, too close to the end of the second service to chance going to that one. After church we came back here, Tiffany grabbed a bite to eat and packed up her clothes, changed into her soccer uniform, and we were off to today's game. This time they won 9-0.  . Following the game, we got home ASAP, Tiff changed clothes again, and all three of us went to a teilgate party at our church parking lot at 3:00, then watched the Bengals play the Patriots on the church's big screen. That's when the Fibromyalgia started to kick in. About halfway through the second quarter, Marilyn's energy was gone, and she shut down, going to sleep, with her head laying on the table in front of us. Despite the rowdy noise of a typical football crowd, she went sound asleep for about 40 minutes or so. Not long after, I started yawning, and thankfully, by the time she awoke, halftime was only a few short minutes away. When it came, we decided to head home, since I had to have Tiffany home by 6:30 for her grandfather's birthday. And the Bengals being behind 14-6 helped a little. Now, it's 8:30. Tiff's at her grandparents, Marilyn and I are relaxing a bit before she takes Derek to work. My legs are killing me; they have most of the day. But I wouldn't change a minute of this for the world. Other than the arguments with my ex in the last 24 hours. But as for Tiff, Marilyn and I? I wouldn't change a second of it. It's the most active family time we've had in a while. And it was great. It was worth running out of "spoons". I won't have any trouble going to sleep a bit later, that's for sure. Hopefully I can gain enough spoons back to handle a typical day tomorrow and get recharged for the rest of an unusual week. Hopefully, we both can.Marilyn and I have a one-time class at church on Tuesday and Thursday evenings this week, and I have an office-related class at an offsite location during the day Thursday and Friday. Sheesh. More "tough" (for us) hours. But the Lord will see us through. That much I can be sure of. |
| That's right. At least one thing is consistent with me for the moment. And that is that I can, so far, always count on the Fibromyalgia killing me with leg pain starting about an hour after I cut the grass, and continuing for the rest of the day. It MAY back off a little as the rest of the day passes, but there are no guarantees for that part. The only sure thing is that I will feel pain in my legs, to some degree, from that point on until I fall asleep. It's times like this that I'm even more thankful I got my Nortriptylene prescription renewed! OH - one more thing. Last night Marilyn and I were awakened by an unexpected phone call, about 3:15 AM. The reason for the call is irrelevant (don't worry - nothing tragic happened), but one thing did happen when I went back to bed after we got things taken care of: before I got back to sleep, my leg jerked once or twice as I lay in bed. The RLS - Restless Leg Syndrome - was back. I was trying to figure out if the Nortriptylene I'd taken at bedtime could (or should) have worn off by then. It didn't make sense. Hopefully our sleep won't be interrupted tonight. We shall see. Does make me wonder though, because some of those RLS leg movements in the past have been so strong that the motion itself has awakened me. Hopefully last night was a fluke. Either way it goes, we'll find out. It's only a question of when. On Kenzie's side, a mild case of the usual "Fibro-frustration" tonight. She was bugged because she didin't get all the cleaning done today that she wanted to, even with taking breaks when she needed them. So I told her two things: 1. It's better this way than pushing herself too hard, wearing herself out even more, and being unable to get out of bed for 2-3 days as a result. Fibro pain can do that - either the pain itself will make getting up too painful, OR it will sap all your body's energy in fighting the pain, leaving you with little or no energy to get up. AND: 2. She happens to have a husband who totally understands, and would much prefer the way she handled this to seeing her stuck in bed for those 2-3 days himself. She's doing her best, and that's all that matters. I'm off to bed. It's 10:50 P.M. See you all later! |
| Yep, you read it right. Yesterday was Kenzie's turn, today was mine. She ran out of energy between 6:30 and 7:00 last night and laid down for a nap. She woke up at 8:30 this morning. That's about 14 straight hours of sleep. She called me at work when she finally got up. And she had a killer headache at that point too. My turn was at work this morning. My knees started absolutely killing me. It hurt to sit, it hurt to walk. They just wouldn't stop. I had to do some knee bends to make the pain back off. I took a Neproxen, and that seemed to get the pain to at least go down to a manageable level. The rest of the day was much easier to deal with, though the pain has never really gone away. For either of us, that is. Kenzie's headache is gone but now she's getting other pains. Sheesh. She told me where those were but I don't remember right now. Darn that Fibro Fog. LOL I guess we'll see how we both feel by bedtime. Hopefully her hours will be normal tonight. But that's a "wait and see" deal too. |
| Yep, you read it right. I started cutting the grass about 9:30 this morning. Having problems with the extension cord (the mower is electric) kept me on my feet a bit more than usual, and that didn't help my back LOL. The spool I keep it wound on finally broke and I had this pile of cord to unravel. A few extra stops to clean out the bottom of the mower didn't help either. The grass was more damp than it looked when I started and kept gumming things up. LOL I finished about 12:15, much longer than usual, and that's likely why my legs and my back are both killing me right now. I knew I'd feel something afterward just didn't expect this much pain. Sheesh. My knees hurt so badly that I can't sit for more than about 1/2 hour at a time without the pain getting worse. I need to get up and move them around a bit then sit again. Sheesh. Hope they ease up by bedtime tonight! At the moment this is one of those days when Kenzie isn't hurting as badly as I am. And it's usually her that's hurting the most. We agreed this morning that this is giving me first hand experience into some of her lengthy pain situations. Guess we'll see what tonight brings. |
| Thought I'd stop by and update this before the Fibro catches up with me in some form. Right now I'm having one of my best days. Not much pain. That will change before bedtime. My legs were killing me at work today, and I know they'll be at it again before bedtime. Kenzie has the fatigue problem again. She's napping. Wants me to get her up at 10:00 P.M. if she's still asleep so she can be up a bit come back to bed so she's not waking up in the wee hours and not able to go back to sleep. She's also hurting all over, which I hate to see. We're still trying to get the doctors to find the reason for some of her problems. Hopefully we'll be able to do that. I fully understand her frustration at not being able to get everything done she wants to, and I hate to see her going through that. |
| Hello, all! Yes, I know it's been a month since I posted here last. Little stuff getting in the way, which is nothing new to any of us; it's part of daily life. . Problem was, many of those things that were going on also added to the stress level a bit, and to the Fibro. The biggest problem was a really hot problem at work. A very stressful situation, the one that we hear and read about and see on TV: "Jim, we need this ASAP". And no one was really sure IF it could be done, let alone HOW. LOL. It turned out, after I'd put about 155 hours into the project, that they decided it was becoming more expensive than they thought it would be to get it done, so they found a way around it. Finally the heat was off. Then, about a week or so ago, my 6-7 year old PC died. Not sure if it's going to be practical to repair it or not. I hope to hear from the shop this week. If it's the power supply, or the CPU, it'll be OK. If it's the motherboard I'll have to pull the hard drive and get a new tower. But that will mean waiting till November. A new tower just isn't in the budget right now. Sheesh. Hence, my current handle. Some days I felt the stress and the Fibro pain from the time I got up till the time I went to bed. The legs would hurt the whole day, the intensity of the pain coming and going, sometimes relative to how tired I felt. Yep, Fibro patients feel the pain more when they are tired. And the last couple weeks, that was showing with me. And once in a while the pain would extend to my arms and my shoulders. And today's a bit lazy. Kenzie had stomach problems the last couple nights or so, and our hours are a bit weird right now anyway with Derek changing shifts on his job. So she hasn't had much sleep the last few nights, and mine has been interrupted a few times with the cat waking us up before the alarm went off. She slept till about 12:30 this afternoon while Derek was working and Tiffany and I were at her soccer game and having lunch. All of us are "up and running" now, but Tiff wants to go bowling in about an hour. We'll see how much energy I have left after about 2 1/2 hours of bowling. But I love doing it, and I need the exercise. So, we'll see. Take care, all, and I will try to be here more often if I can even though I have to borrow Kenzie's PC when she's not on it. See you all soon! |
| Greetings again, all! I just wanted to take a second and suggest a short item for you to read if you want to understand at least in part, how Fibromyalgia effects Kenzie and I. Keep in mind that the story I'm suggesting here is actually written about a girl with Lupus, which is far more serious than Fibromyalgia. But it will give you a good idea about what happens to the energy level that Kenzie and I feel from day to day, hour to hour. You will understand better how and why our energy levels can vary so widely. Please ask any questions you have after you read the story I mention below. Kenzie and I will answer them all. That story is: www.butyoudontlooksick.com/spoons.htm If you can't get this one to work pasting it in your browser, go to the home page (butyoudontlooksick.com) and look in the item list in the very left column for The Spoon Theory. We look forward to your questions. |
| Yep, it was. We all know the old phrase "It's been one of tnose days...". Well, for Kenzie and I we can now officially take that idea up a notch: it's been one of those MONTHS with us. Good and bad. Here are the highlights, in no particular order. Derek's girlfriend Allison came back up to visit a couple weeks ago for a special anniversary date in their relationship. She's planning on being here about another week or so. Yes, she brought Bone, the chihuahua with her . Even Kenzie and I had missed him barking at us as we go out the door to go somewhere, like the grocery store, or to church this morning. It's nice to have things back to "normal" for a while. Even our cat, Pi (short for Piwacket) missed him. She was bugging us for attention all day for quite some time while they were gone. Now Bone keeps her occupied and they both have a ball.The Fibromyalgia has been taking its toll as always, though. Lately, there have been a number of nights when I ran out of energy really early, going to bed about 10:00 P.M. instead of 11 or 11:30. And one night, Kenzie had the reverse problem: went to bed about 1:00 AM, woke up about 3 or 3:30 WIDE AWAKE. She was up the rest of the night, crashing again for a nap the following afternoon for about 4 hours. But, the Fibro does give us some humorous times, too. We noticed some time back that we can get a special kind of challenge out of watching some of our favorite TV shows. We are big fans of the "Law and Order" group of shows, and the three CSI series. Where does the Fibro come in? We look at the description of the show and see if it sounds familiar. It often doesn't, even though it says it's a repeat. And even when we can place the PLOT, we notice that if we recognize anything, it's often only as we SEE it, not in advance. So many of the shows are new to us because we didn't see them the first time around, but many are ALSO new to us because the Fibro fog wipes out different parts of the memory for us. What's neat is we can ask each other "Do you remember this?", and discuss it, and end up with each of us remembering different parts of it as the show goes on, or being totally surprised by it. Once in a while, we'll have one come along where one of us will remember an upcoming scene and say so, but not reveal it so the show is still fresh for the other one. With the Fibro fog we can have a lot of fun with our favorite shows. Another example of the 'fog' happened just two days ago. We were sitting on the porch talking, and suddenly came up with something the Fibro fog brought to mind. We laughed really hard,and Kenzie said I should put that even in this blog. I agreed. Problem is, later that night, when I went to make that entry here, I couldn't remember what the event / thought was. And neither could she. We decided today that we must have laughed so hard at the humor in it that we got sidetracked before it really registered with us. LOL. We have since agreed that if that particular thought came back to mind we'd interrupt our conversation and just "spit it out" so we don't lose it again. LOL Lately, too, though, the Fibro is still giving us the aches and pains we can do without. We went to our local township festival last night, with my daughter Tiffany. We had tons of fun watching her on the rides, and ROCK CLIMBING. Geez the kid's a natural. 3/4 of the way up to the top. Almost made it. And we all love the food at the festival too. My favorite? the italian sausage sandwich with green peppers and sauteed onions. But toward the end, we had to head home just a little sooner than Tiffany wanted. We were both getting very sore legs, and didn't want to get to the point where we couldn't walk. We made it home, but each had to take an additional pill to sleep last night. I took a Neproxen (prescription Aleve) along with my nightly Nortriptylene. That did the trick. So, as you can see, Fibromyalgia can bring both fun and pain. But as long as we have a sense of humor about it all, we'll do just fine. See you all soon! |
| That's right. Found that out again first hand this week. For once, I had a couple pretty decent days in a row. Minimal pain, even at night, though its presence was still noticeable. It felt great to be relatively free of pain while walking, especially since I try to walk about a mile each evening as part of my exercise program in dealing with the diabetes. But, just like the old saying "All Good Things Must Come To An End", that did too. For the second Saturday in a row, Tiffany and I went bowling. She hadn't been bowling in about 2 years, and it has been at least 10 for me. Both weeks, we did better when we left than we did when we started. Last week we bowled 12 games, last night we bowled 16. I love the exercise, and I love to bowl. But I was feeling things last night after 16 games. Hard telling how much was from bowling for the first time in years, and how much was from the Fibro, but I could tell the Fibro was involved. By bedtime my legs will killing me as always, but so was my back, in places it doesn't usually hurt. Today was better, until Tiffany and I rode our bicycles together for abotu 1/2 hour around our subdivision. Sitting here now, I'm not too sore, but the fatigue has set in (it's 6:30 PM). Kenzie wasn't as lucky. Her back's been bothering her more than usual recently for the last few days. And this weekend it was really bad. She couldn't find a comfortable positino, which ruled out going bowling with Tiffany and I, even as a spectator, and taking a walk with us last night. Hopefully things will settle down for her soon. And hopefully my beginning regular bike riding and bowling in addition to the walking will help the diabetes issue in a couple ways without setting off the Fibro too often. THAT remains to be seen. I'll let all of you know what happens. See you all next time! |
| Yes, you read it right. Today has been one of the days that's "lousy" from start to finish. It really started yesterday (Saturday) afternoon. The weather this entire weekend has been cloudy, chilly and damp with periodic showers or storms. Weather like that will almost always set off the pains of Fibro in some form, at least in most fellow patients Kenzie and I have talked to. And it does it for us every single time. The only question is the form it will take when it strikes. My daughter Tiffany was here for the weekend. She decided she wanted to go bowling, and would wait a while to see the movie "Cars". Problem was, Kenzie had no energy, and not only couldn't go with us, she'd been asleep about 1/2 hour when Tiffany made the choice of what she wanted to do. It'd been 2 years since Tiffany had been bowling, and at least ten years for me. I went downstairs, got my bowling bag with my grandfather's ball and shoes, and we headed up to King Pin lanes. Yes, I've used my grandfather's ball and shoes from the start year ago when bowling with my dad. The shoes fit like a glove, and I didn't even have to have the holes in the ball moved and redrilled. I used the ball as it had been for him, too. I rather like that idea - talk about family heredity . I just wish I could have followed in my grandfather's steps with my knack for the game - the very first time he picked up a bowling ball in his life, in his 70s, he bowled a strike. I still love that thought, today. Tiffany and I both started off absolutely lousy at it, of course, but were having a ball. By the time we stopped however, TWELVE GAMES later (lol), we were both doing much better. Tiff's highest score was about 60, mine was almost my old average. My highest score was 142. We decided to do it again, most, but not all of the weekends she's here. That's how much we both enjoyed it. And it's great exercise for me, considering the diabetes. We got home 3 hours after we'd left. Kenzie was up, and she said she'd figured out where we went because if it had been the movie we would have been home sooner, and she'd awakaned about an hour and a half before we got back. lol. She apologized to Tiffany for not having the energy to go with us. Hopefully she will next time. Tiff openly said she'd love that. The problem continued this morning. Kenzie didn't have the energy to get up for church. And when THAT happens, you know something's serious. Kenzie is very devoted in her faith and hates to miss a single Sunday. And I admire her for that. But today was not to be. And it was particularly disappointing to both she and I as our church started an 8-week series on both sides of the controversy surrounding The DaVinci Code. One that we both have been looking forward to. So I knew she was still worn out. Me? I almost had problems getting up this morning too, but I knew one of us had to be there. To keep us both up to date on the series, yes, but to get our T-shirts ordered for when we participate in outside activities as part of the church, like our township's 4th of July parade. Today was the last day to order the shirts. As I sit here now (6:30 P.M.), I'm starting to slow down again myself, so we'll see how long I last tonight. Last night, I couldn't tell how much pain was from fibro, and how much was from bowling for the first time in 10 years or more. LOL I hurt all over. Legs, back, and arms. Mainly the back, though. But for once it was worth it. Some real one-on-one father-daughter time. Always worth it. She and I hadn't been able to come up with an activity to give us that, then it came to her mind right out of the blue last night about 6:00. I have to believe God had a hand in that idea coming to her mind. It was a great time, worth the pain I felt later last night. We'll see what a new week brings. Right now, it's jsut my legs as has been the usual lately, regardless of weather. But I AM slowing down early. So we will see. Later, all! |
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