03 February 2008


I'm exhausted. I have had a long day. I have not had proper meds today...my own fault pretty much though. But, I got off track this morning and didn't take my meds that need taken for breakfast until 1 pm, definitely not for breakfast. Then it means I couldn't fit in all of the other doses I needed. Which is ok for the lunch/dinner meds. I can generally combine them in a way to take meds three times a day rather than 4. But not today. Because I've been so off kilter, I've gotten busy sitting here doing stuff and just realized when I went to move (because I was so tired I didn't MAKE myself move like normal) that I missed that combined lunch/dinner dose and I was hurting. Now it's about an hour and a half til I will take my bedtime meds (I'd taken them now if I didn't wanna be awake until BC came home) that I can't do that. No wonder my BP was up the other day. I can miss partial doses of meds without withdrawal. But, it definitely does NOT feel good. Duh. If I felt good without meds, I'd not be on them since I REALLY hate taking them. I do not like living by the knowledge that in order to have less pain, I must take certain meds so many hours apart.
Don't get me wrong; I'm more than thankful I have my meds. They do help. They don't cure the pain. They don't even always let me do more than I would without them. But, I'm easier to be around when I am taking my meds for pain. I am not fighting pain with every mental bit of energy. When I am off meds and using all of my energy to ignore (ha), fight, distract myself etc from pain, I am not fun to be around. I don't even like me. It's just that high levels of pain tend to make me very grumpy. And they raise my BP, which adds more pain sometimes because it can lead to a headache etc. The meds make me more comfortable basically. Is that a better life? Yup. For me, it's good enough to keep taking the meds. Would I like more relief? Who wouldn't? I'd also like a couple of million bucks. Am I likely to get either? Doubtful. The pain relief isn't likely to get increased because of the nature of my diseases. I am realistic enough to know this. I went into pain management not wanting to get rid of my pain. But, wanting to reduce it. And we have. I can manage better some of the time. And others, it's not the pain that is the issue.
Those times, the issue is the overwhelming fatigue. Fatigue that we're fighting in multiple ways. One way, by reducing pain where we can. Another: by regulating my nighttime sleep. I don't wake up like I used to. I am still a light enough sleeper that if my son needs me, even medicated, I hear him. But, I'm not a light enough sleeper that my hubby wakes me every time he moves. A third way we're trying to reduce the fatigue is by controlling the diseases where we can. Fibro is manageable, RA is manageable, all of the others, manageable. Are they controlled? Eh...not so much. Fibro especially. RA isn't as bad as it could be although there will never be a healing of the joint damage I have. Sucks to be me doesn't it? But, you know what? Sucks to be a lot of people...and this was caused more by lack of good knowledge and not by doctors who just didn't do their jobs properly. Even if RA were cured tomorrow, I'd still have to live with the effects of what it has done. Them's the breaks! And aside from all of the other self- care strategies for helping fatigue that I know the last way we're trying to combat fatigue is by keeping me awake during the day.
All of that combined is NOT helping this week. Of course, I've been pushing myself WAY too hard. And because this is a busy week for my son, I will continue pushing until I either crash or it is over. Either way, it will mean I've thrown myself into a flare up of fibro at the very least. The last few weeks, my muscles haven't been hurting. I've had joint achiness and some pain even but not surprising due to the weather. But, fibro wise, it's been the fatigue and mental fog. And the fatigue had started to clear. Until...
Friday I had a doctor's appt. BC and I also ran some errands and did some shopping we don't normally do. Saturday, I tried to recover some but did a few things around the house. Today was a horrible day. I did not go to sleep until after 2:30. I was awakened at 6:30. We left the house (late) by 7:30 and found out...we had a flat tire. Waited at Wal-mart to get it fixed for an hour and a half. But it was never fixed. BC ran an employee home from work, and then we went to Costco to find out if they could just do all 4 tires. No, needed to special order. All through this, I've been unmedicated because like an idiot I left without either taking meds or even grabbing my case. Stupid! Thankfully, I am not to proud to use a wheelchair! Then home to take meds. I decided I was done. The boys went to get the tires finally and then BC dropped Bastian at a friend's house before going to work.
Tomorrow, I have to take BC to work, get an oil change at least, but possibly a tune up, go to the doctor, find and order 2 Batman cakes, get a haircut, find something to wear to school Thursday and to Bastian's party Sat., pick up Bastian, pick up BC and pick up a list of things to turn my son into a Dalmation! This week, I also need to: pick up drinks for 30 kids, pick up plates, cups etc at the party store, pick up the stuff for goodie bags and put them together, go to the pharmacy, go to the medical supply store to get my wheelchair fixed and pick up replacement electrodes for my TENS unit, call about the food for the party Saturday, keep track of RSVPs, pick up my Mom Friday night, and have the birthday party then take Mom home Sat. All of that in addition to my usual stuff I HAVE to do like oh, housework, pay attention to the boys and critters, sleep, help Bastian with homework, have lunch on Bastian's birthday at school, sleep, shower etc.
I almost never do this much spread out over 2 or 3 weeks let alone in a short time.
I am already tired and hurting. So I am not sure when I'll crash. But, it's coming. After awhile, you can recognize the signs when they are building. Can you always stop doing? NOPE. Despite my fondness for saying "You're a human being not a human doing." and "You can't take care of others until you take care of you" those don't get the job done.
So, it will come. And then...I will crash and be in a great deal of pain and fatigue for awhile and then eventually it will lessen. Notice I did not say go away. Pain and fatigue are my constant companions. Sadly, they are the bad friend that you are not sure why you keep around and really for one reason or another can't escape. But, I've also lived with them long enough to know that if they were suddenly gone, it would be a big adjustment for me. I'd not miss them in the sense of wanting them back. Nor do I let them define me (or I try hard not to) but, in a way, since I've grown up with them, I'd have to learn to live all over again without them. I honestly don't remember a day without pain at least. The closest I can come is the day I gave birth to my son. I had a good amount of strong pain medication in me and the worst part of labor and delivery was the leg cramp that wouldn't go away. Then feeling the stitches as the doc stitched me up and when she broke my water. Even those weren't painful so much as uncomfortable. Just as "normals" who get diagnosed with a chronic illness have to completely rethink their sense of normal when they are diagnosed, I'd have to do the same if the pain and fatigue disappeared. And it likely would be pretty hard.
Ok this is way too deep. I gotta get to sleep before I get even deeper.

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