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.|
| It's been ages - again - since I've been here, but at least you know half of the reason since you know the title of this blog. The frequency of my pains has been growing over time, but the biggest part of the "surprise" is that I'm getting pains in places I've never had them before, although I suppose that is to be expected. I'm taking a humorous view of it, though. I know someone has almost certainly said this before in some way, but I can't resist. I could say that I'm having pains in places where I didn't even know I had places. .
The other half of the reason it's been so long has to do with something I think I mentioned years ago on this site, my probably-the-mildest-case of cerebral palsy on record. On some days it feels like my age is slowly making the CP slightly more evident. My stride with my left foot is the slightest bit shorter than stepping with my right, and once in a while my left foot will drag when I step forward with my right foot, which slightly affects my balance, but only for that step.
Those two things have slowed me down a little, but they're not stopping me. Things just take a little longer because both of these issues tend to slow my pace a little in the course of my day. I leave my office desk about 5 minutes earlier than I used to when going to a meeting so I can get there on time, if not a bit early to make sure I get a seat (a couple of the offices are short on chairs, and I can't stand in one spot more than about five-ten minutes before my back starts to hurt).
We'll see what comes next. I WILL be back, hopefully sooner than later. May the Lord watch over all of you in the meantime.
| Believe it or not, I'm finally back. This time has been too long in coming. Notice the title of this entry: Don't Take Even Your Simplest Abilities For Granted" A number of times since my last entry here, I've found this out first hand. On top of increased frequency and stronger Fibromyalgia pains, now also in additional locations, add the fact that I've had a couple of muscles in my right shouilder and arm get out of position and require physical therapy to get proper motion back without some really sharp pain.
My wife's Fibro has gotten worse as well, so we've both adopted one line we both use to encourage the other at those times when either the frequency, location, or intensity of our Fibro pains really seem to be getting hard to deal with. Whenever one of us makes a fiirm statement about the pains that also has a hint of frustration in it, the other will say, calmly, "It's hell gettin' old, ain't it?", intentionally butchering the language to sound a bit more like our grandparents' generation. That's usually enough to bring a smile and start getting things back to normal.
Then, there's the fact that our bodies burn energy fighting the pains. With a slightly increasing frequency, I'm now having some weekend days where not much gets done. I wake up about 10 AM. Not much pain when I first get out of bed, but by the time I shave, shower and get dressed, my back, my right leg, and occasionally other one or two places will be killing me. I take the oldest of our two cats outside for a walk, for up to 30 minutes, depending on the weather, and that seals my fate for the next two hours or so. Once I bring her back in the house, I have to lay down and stretch out my body and stop using those muscles a while to have any chance of stopping the pain for a while. And since my body has burned energy fighting that pain, I usually fall asleep for an hour or two.
Repeat that scenario plugging different activities in place of the cat walk, and you pretty much have what happens on some of my Saturdays.
Weekday evenings can end up the same way after I get home from work. It often depends on how much I was on my feet each day at the office. Some days not even the 45-minute drive home is enough time to calm the pains down, especially if my back is one of them.
I'm hoping that more things will get done once I retire and can put those activities in place of going to work. Problem is, right now I can't afford to retire. So, I'm caught a bit between a rock and a hard place, as they say. Obviously I will see how things change as time passes. I'll try to do a better job of keeping all of you posted.
Just remember this subject line, and don't take even the simplest abilities for granted. Any day you get out of bed one or more of them may decide not to cooperate.
| I realize it's been a long time since my last entry here, and for that I apologize. Long hours at the office on a major project (recently completed), and dealing with the onset of Alzheimer's in my 92-year-old father haven't left much time for family, much less being online. For that I apologize. Hopefully my time here will be on the increase now.
As for the Fibromyalgia situation, I asked the Lord to give me more insight into my wife's condition with it, not remembering that our Lord has more ways of answering our prayers than we realize, and He also has a sense of humor. He used both of those traits in answering my request. When I asked him for more insight into Marilyn's situation, He gave me that insight by giving me more, and stronger symptoms of my own.
Now, for example, when I have a good healthy sneeze, immediately afterward my elbows will hurt for a few minutes. Also, Restless Leg Syndrome is also a symptom, and I've been taking medication for that one for some time. But now, I will also get pains in the bottom of one of my toes (which toe gets hit changes from time to time) that feel like I'm being stuck with a pin or needle. And the obvious reflex takes over, jerking my leg back, trying to get away from the source of the pain, resulting in the same movement as the restless leg syndrome would trigger; only this one won't be slowed by the medication because the trigger is an external source,not within the body, which is where the medication works. Sheesh.
Another new symptom, or combination of them, occurs when I do any form of strenuous exercise or work. For example, cutting the grass in the summer (it's about 1/2 hour of constant effort), or, like this afternoon when I mounted a new curtain rod in our kitchen so we could hang drapes over the bay window, both for privacy and to cut down on the cold air coming into the house at that spot. About 15 minutes after doing something like either of the above examples, I start to hurt very badly, in a way that feels like it's everywhere at once. Joints, muscles, you name it. Any movement brings pain somewhere. And under those conditions, that overall pain will often last for hours.
Well, all I can say is, He answered my prayer in a way that makes it obvious that He gave me the answers I was looking for, just not in the way I thought He would. There's an old adage that serves as a good way to warn others, whether it's about Fibro, or any other problem situation: be careful what you ask for; you just may get it. I did.
Till next time...
| Yep, I was reminded of Fibro's use of chronic fatigue.
This morning I slept in till about 9:30, and that felt great. I got online about 12:30. By 1:30 I'd dozed off a couple times, and decided if that was going to happen I'd better lay down. I did, and woke up an hour and 15 minutes later.
Now I fully understand how it could put Kenzie to sleep in the middle of watching the Bengals-Steelers footballl game last year at our church, despite the noise from the broadcast AND of the crowd.
| Yep, you read it right. A couple months ago or so, when it was still fairly mild outside, I took our bigger, but younger (about a year old) dog, Zeus, out the front door to do his usual business. Problem was, he spotted our very friendly neighbor, Ryan. Those two had really gotten to be good friends. So, when Zeus saw Ryan out by the sidewalk at the corner of his driveway, he takes off running to greet him.
I hadn't spotted Ryan at that point, and didn't know this was coming till Zeus yanked the leash, pulling me off balance. I tightened my hold on the leash so he couldn't get away and make things even tougher, but that meant that I landed on my stomach on the grass and he literallly pulled me along behind him till he got to Ryan at the corner of our yard.
Very upset by then, once I was on my feet I yanked him back toward me, speaking in a tone that could not be mistaken, and put him back in the house.
My right arm and shoulder hurt off and on after that, but I figured it would dissipate with time. Wrong. It went away for a while, but now the pains in that arm come back once in a while, coming and going like my other fibro pains that have been added to my list over the last few years. The shoulder itself is included in that list.
So, I have a couple new chronic pains to surprise me when they feel like it. (I felt led to make this entry when they started acting up again tonight.) Zeus still spots an animal or person and starts to run at top speed once in a while, and even though I watch for those moments as soon as we get through the door so he can't pull me off balance, the effort it takes to pull him back could be helping to maintain these new pains; I'm not sure. But, there's not much I can do about it because I don't stand any chance of keeping him under control at all using my other hand. That's physically impossible. So, I do the best I can and take my chances on the future of those new pains. Sometimes I think I'm gradually getting used to most of my pains, and maybe I am. But then a new one comes along and reminds me what it feels like to wish they could find a cure for this Fibromyalgia thing. I know I'm not alone in that wish (I know I have millions of others for company on this), but I also know that cure is something that not even Santa can bring this year.
So where does all this lead? Right back to a short prayer of thanks that I'm as healthy as I am, and that He watch over those whose health is not as good as mine. Wherever they might be. Thank you, Father. In Jesus' name, Amen.
| You read it right. This past Thursday and Friday have been the two worst Fibro days I've had since knowing I had it to begin with. And trust me - that was a long time ago - about 40 years, give or take a couple.
Both days I had pain from the moment I got up in at least one place, most often more than two. And, both days, it got worse as the day progressed, to the point where in the evening hours, from about 7:00 PM on, I couldn't move without something hurting, and there were a number of things that continued to hurt whether I moved or not.
You name it. Back, shoulders, legs, arms, neck, plus every joint you can name and one or two that we can't usually name because we don't give them a thought until they hurt. Knuckles, knees, elbows, sacroilliac (usually the left, but sometimes left and right take turns).
Kenzie and I have made short work of communicating the thought to each other when we have this all-inclusive problem. We sum it all up in just 2 words: everything hurts. Period.
Then tack on the energy drain as my body consumes energy trying to fight the pain, and that makes for an interesting end to the evening. Getting up out of the chair after watching NUMB3RS with Kenzie last night took energy, which I barely had, and brought more pain that I didn't need. But, praise the Lord, I managed it. And yes, I'm giving Him the credit because with that much pain I can't be sure that I could have accomplished it on my own.
I got up at 8:30 this morning, took both dogs out, then went back to bed and slept till almost 11:00. That's about 11 hours of sleep. But at least I got reasonably well recharged, and the pain is down to something manageable. Just my elbows and back at the moment. But this rainy, cold weather is liable to bring back all the rest as the day progresses. We'll just have to see what happens. Hopefully, it won't come any where close to last night's situation any time soon.
| When I got on here just now to make this entry, I noticed how appropriate my wife Kenzie 's costumicon is for the day I've had. I got up about 9:30, after going to bed about midnight. That's around 9 1/2 hours of sleep. I feel great after a sleep like that, even if it is momentarily interrupted when she comes to bed about 1:30 AM or so. Today was starting off just fine. The problem this time was it didn't last that long.
I had my cereal breakfast, cleaned up after the dog, swept the living room floor, sat and talked with Kenzie on the porch for about 1/2 hour or so, then came in and got online to check email here and at Gather.Com, then do a little more of what I hope will be the final editing on the biography. I turned the local news on the TV here in the bedroom as I worked, then turned it off after the news and went back to typing.
Next thing I know, Kenzie's opening the bedroom door to go through a couple baskets of clean laundry, and she says, "You look like you ought to take a nap, dear." As soon as she opened the door I realized I'd dozed off, sitting here at my PC. That told me she and I were on the same page. I hit the bed.
I woke up between 3 1/2 and 4 hours later, at 4:45 PM.
So much for a Saturday afternoon. And a fair share of that editing.
Looking back, I think I should have expected this. I was hurting all over most of the evening last night, and still when I got up this morning. So my body was burning a lot of energy fighting a lot of pain. It's at times like this that I get a first hand taste of what Kenzie feels like on most of her days. That "overall" pain is a real problem. Thankfully, the only pains I've had since the nap are my back and the fact that part of my left leg was on fire for about 1/2 hour.
I'm just thankful that the fatigue part of the fibro only hits me outside the office. Hopefully it will stay that way. Obviously time will tell.
| Yep, a see-saw. After that extra-painful 48 hours or so, the most recent 48 hours have been considerably more pain free. Just my back pain moving around, a small occasional headache, and my legs once in a while. Much better than the preceding painful period. Praise the Lord! Hopefully, that will continue. But, as always, it's in His hands, and I will praise Him either way.
| Hello again, all! The last 48 hours or so have been more painful than in the recent past, but I also discovered that Kenzie and I seem to be much better off than some of those with Fibro.
The last couple days, I've had more first-hand experience with what Kenzie means about "hurting all over". My elbows, my legs, my left sacroilliac joint, and my right shoulder have all been hurting at the same time. The left sacroilliac joint would be worse when I first got up, backing off over the first few hours of each day, then all of them would hurt about equally.
And one day last week, I found out from a coworker that another coworker has fibro too. Karen was going to put me in touch with the other lady that has it, but when she tried to contact her, she found out that Nisha has been off work for two weeks, and will be off for at least one more, because her fibro is acting up so badly. Ouch. Hearing that tells me that despite our pains, Kenzie and I aren't doing so badly. Praise the Lord!
| Remember that irritated sacroilliac joint I had to deal with using the cane a few weeks back? Well, it looks like it's back in a different, and thankfully more manageable form: as the newest "member" on my list of Fibro pains.
Yep, over the past week or so, it's been coming and going all over again. Shorter stints, milder in intensity, but definitely consistent, about every three or four days at this point. Only time will tell, but I'm hoping it cools down rather than getting worse. We shall see.
I have to make an appointment with my doctor for July anyway, so I'm hoping I can get him to give me consistent refills on the muscle relaxer so I can take them as needed to cover this darn pain. Time will tell. Thankfully, it's only a nuisance pain at this point like my others. If it has to be here, I just hope it stays in THAT category.