Saturday, May 31, 2008
Friday Was Another Not Bad Day; Saturday, too
It seems like changing the furnace filters did make an impact on allergy affects. I'm experiencing less sinus troubles. I'm sure more frequent vacuuming, including running the vacuuming robots, is helping, too. Summer may be more productive simply because the air conditioning runs so much and therefore the air is more filtered. I can't remember if that was the case last year, but I seem to remember something like that. The sunlight certainly helps, too.
Last (Friday) night I had sleeping trouble. I was terribly antsy. I think I had some caffeine too late in the evening in a mixed drink. That should be easy enough to manage in the future.
This morning is going well. The air conditioning is running and the air *feels* good. I don't know how to describe it any differently. I seems easy to breathe; the air seems light and almost sweet. It's a beautiful sunny day, too.
Thursday, May 29, 2008
A "Catch-Up" Day?
Back to "Normal"
Usually I feel best if I allow myself to sleep until I feel well-rested, but I'm trying to keep to a schedule. I allow for some "down-time" and/or naps in the afternoon. I've successfully kept to that schedule since Tuesday. Tuesday, I didn't nap, per se, but I did allow myself to get close while listening to some television with the children. I felt better afterward. Yesterday, I did nap. I don't remember whether I felt better afterward. I do remember it being *very* difficult waking up and getting myself going afterward. My guess is that means I didn't feel better. I did have a good evening, though, even making a "real" dinner.
The furnace filters were changed last evening. I wonder if I'll see any difference with respect to that, either with sneezing, a runny nose or maybe even tiredness. One of the filters is in my bedroom. I don't feel any more congested than normal, though.
This past week, I've had lots of very vivid and complex dreams. Sometimes I dream in the morning when I allow myself to go back to sleep. I have no idea if it makes any sense, but I think when this happens that I've awakened in the wrong part of a sleep cycle and I need to finish the cycle to feel better. I think I remember it helping to wait until I don't wake-up during dreaming. Given my memory troubles, though, I can't completely trust this.
I still haven't called the sleep doctor. Beyond not being thrilled about calling, I'm not thrilled at the prospect of trying yet another medication that causes, rather than solves, problems. I do need to call, however. It won't get the problem solved by not calling; calling might help.
Sunday, May 25, 2008
A Pretty Good Day
I slept in until 8 o'clock and felt pretty good, enough that I'd describe it as well rested. The sunny day helped, too. Sunlight makes a world of difference for me. The cool morning air helped, too. The day was very muggy, so I finally gave in mid-morning and turned on the air conditioning. I've felt much, much better, though not very energetic. I'm not sleepy, though.
Saturday, May 24, 2008
My Own Personal Energy Crisis
I just can't seem to find any help energy. Caffeine doesn't help. Nor does making sure I'm well hydrated, eating well, periodic resting. Cool outdoor air helped earlier in the day, but since cool doesn't exactly last very long, that ended around 10am. I have *so* much I want to do, even so I really have to push to make myself expend the energy, and then as soon as I slow down I feel just how tired I am. Finishing any task is hard.
It's nearly supper time. My hands and arms feel tingly. I have that plastic coating feeling again, too. I'm afraid I feel my legs starting to get funny feelings. I don't want to go there.
Friday, May 23, 2008
Some Results, SOP
Now, hours later, I'm not overly tired, but if I allow myself to stop and just sit, I am tired. I've eaten well today and concentrated on drinking plenty of water. Other than this morning's nap, I've not slept during the day.
I still haven't filled my script for klonopin. I want a few more days without additional medications that may very well make me even more tired. I'd like at least some life every now and then.
Thursday, May 22, 2008
Still Looking for a Solution
Today's appointment was with my gp rather than the sleep doc. It was basically an update on what's going on with the sleep doctor. She gave me a prescription for clonopin to help with sleep until I can get in to see the sleep doctor. I've not had it filled, yet. I think I'll try again without anything and see. I may end up taking another vicodin tonight to get some sleep. I hope not.
I've only taken one nap today. I just couldn't stay awake without it. My goal is to go to sleep at 10pm to get a full night's sleep so I can have another productive day.
Wednesday, May 21, 2008
No Requip, Day 2
Tuesday, May 20, 2008
A Productive Day
I still didn't call the sleep doctor. I did have a lot to get done today, but had I wanted to do so, I could have found time to call. This is purposeful procrastination. And, why not? As I recall, the next step is something like Mirapex/Requip combined with some sort of sleeping pill. The idea of needing something to sleep is certainly not some place I really want to go. The prospect of trying drug after drug and going through various weaning processes, troublesome side effects, isn't very encouraging. Being sleepy all the time isn't acceptable, but so far, neither have any of the potential "helps".
Requip Weaning
I've not called the sleep doctor, yet. I anticipate problems. Requip isn't working for me and, frankly, I really don't want to try yet one more medication that causes me to be more tired or make my legs twitch. I'd rather just be my regular tired than feeling tired and fuzzy (or uncomfortable) from medication.
I'm pretty sure that's not going to be a popular opinion.
Sunday, May 18, 2008
Twelve Hour Rule Worked Again
I slept for two hours after coming home from church. As usual, I didn't wait until after lunch, I just went directly upstairs and to sleep. I awoke rather suddenly when something fell nearby. After that I couldn't go back to sleep because my knees felt funny. They needed to move. RLS symptoms strike again. I got up, still a bit groggy, but it didn't last long.
I was able to spend several hours outside doing some light gardening. My landscaping is a mess. I just haven't the energy to keep up with it, so I'm paying for two years of insufficient maintenance. I've been careful not to overdo it.
Saturday, May 17, 2008
Paying For Breaking the Twelve Hour Rule
I'm dull, groggy -- it's that whole plastic coated feeling again. At least yesterday I had some time between waking up and the plastic coated feeling when I wasn't tired and/or groggy.
I've had one cup of coffee, 2 litres of Diet Dr. Pepper and 32 oz of water, so both my water and caffeine intake shouldn't be causing the tired feelings.
I have stuff I WANT to do. LOTS of it. I know that if I start something feeling like this, I'm likely to have to quit part way through -- and after I have stuff spread out -- because I'm too tired. I also have some "brain stuff" to do, but this plastic coating makes it impossible for me to be confident I'm not making some really stupid mistake. Having done just that, I just don't feel competent to do anything too important.
Friday, May 16, 2008
Who Dreams About Laundry??
I found myself staring in my dresser drawer, not believing what I saw, or rather, what I didn't see. I didn't see the laundry that I clearly remember putting in there. Clearly. Very clearly.
So what do I make of this? I must have dreamt it. It's not the first time I've confused dreams with reality. I've had to ask my spouse whether what I remember is fact or dream before. It's crazy-making. How do I make plans, decisions? On what can I base them, if I can't trust my memory for simple things such as putting clean laundry in my dresser?
Dull
I feel....dull, plastic coated, like I'm not quite here able to put everything together and think things through completely. When I get ready to do something, I always feel like I'm forgetting something. It's like I can't quite put "it" (whatever I'm doing) all together. It's not really detached. It's like I'm not quite all the way in reality, like I'm not interacting with reality, there's some sort of barrier there. Ugh, plastic coated is the best I can get. I feel like I have to fight through that coating to get to reality. It's not exactly a pleasant feeling.
I'm looking for the words before I call the sleep doctor. Or rather, his nurse. I want to get the words right so she doesn't recommend a higher dosage or a prescription to give it a bit more of a try. I think the last time, when I tried to tell her that the Mirapex made me much more restless than normal, that I failed and she thought I was still having problems with RLS.
Communicating certainly isn't made easier by this feeling of plastic coating.
The Twelve Hour Rule
I still have yet to call the sleep doctor. It seems I'm tolerating the Requip well; HOWEVER, it's not helping me feel less sleepy. Is that a success?? If so, it seems a rather pointless one.
I made it through yesterday without a nap, although there were several times I very much wanted to nap. I hadn't used much caffeine in the last few days (despite remembering when I blogged, I'd forgotten by the time I made it to the kitchen), so two cups of coffee helped when I felt tired.
I didn't experience any RLS symptoms yesterday, despite being sleepy. That's a definite improvement. I wonder if the caffeine has anything to do with it.
Thursday, May 15, 2008
D-Day for Requip
I'd like to think that the medication not helping me be less tired/sleepy will enter into the equation when I call the doctor -- either to say I'm not tolerating Requip well or to ask for a prescription. It's so odd to be contemplating how to contact the doctor regarding a medication that been diagnosed to help a problem that no one notices while ignoring a big problem that obviously impacts my daily life and has for years. Make that decades. Ugh.
Wednesday, May 14, 2008
Super Tired
I took a 1.5 hour nap around 11a and another 1.5 hour nap around 2:30p. I could, maybe even should, take another nap now. I won't because of past experience with early evening naps making it hard to sleep at night.
I took my Requip just after 6p tonight. I'm hoping the effects will be more out of my system in the morning. I've slept much of the past two mornings. I very much would like to get some things done.
1mg Requip Day 2 and Still Groggy
I noticed yesterday that my back ached. It wasn't a big deal, just slightly, but it was there. I was pretty slow the whole day. It was a day that driving wouldn't have been a good idea.
I didn't experience any RLS symptoms last night before sleep. I didn't have any jitters anywhere else, either.
It's a whine and completely off-topic: I've fought through tiredness for so many years.....it's hard to convince myself that there's any meaning in fighting through even more tiredness, that I shouldn't just give up, sit down, and let life happen around me, without me if need be.
Tuesday, May 13, 2008
The Tired Finally Hit
Not As Tired As I Could Be
Bad planning had me taking the 1mg Requip dose just before midnight last night. I have no idea what time I made it to sleep. I spent some time, maybe a half hour, riding my stationary bicycle to get rid of the RLS feelings. With the Requip, the feelings are mostly in my knees and the muscles on the front side of my legs below my knees. The bicycle helps very well. I seem to be able to rest well while doing it, too. It doesn't seem to pump me up to the point where it makes it more difficult to sleep either. Perhaps riding should become part of my nightly routine?
Monday, May 12, 2008
Another Normal Morning
Tonight I take the next increased dose, going to 1mg of Requip. If this dosage increase is anything like the previous ones, tomorrow will be a very sleepy and sleep-filled day. I hope not.
I don't look forward to finding out just how much a 90 day prescription to Requip is going to cost. I'm paying close to $500 for 90 days of all The Other Stuff the doctors have me taking. With Requip being new, I anticipate it won't be cheap or available as a generic. Ugh.
Sunday, May 11, 2008
I Can't See That Anything's Changed
There is one noticeable change: whenever I get tired and I know I need to nap, my legs start to get restless. I think I've identified a medication to *give* myself RLS.
I'm ready to say I can tolerate this medication and the now daily RLS if it will get us on to the next stage of really trying to fix my EDS.
Saturday, May 10, 2008
Groggy then Tired
Friday, May 9, 2008
Day 4 of Requip - More Awake
When I was going to sleep last night, my eyelids felt like they were twitching and flickering. The movement was entirely uncontrollable. The only way I could stop it was to open my eyes. It was very uncomfortable and disturbing. While my eyes were closed, lights and bright images flashed. Thankfully, it didn't last long. I hope it's not a normal feature of falling asleep.
I still experience unfamilar RLS feeling in my arms and legs, sometimes during the day, and each night. They're not terrible, only mildly annoying.
Thursday, May 8, 2008
Day 3 of Requip
So far, today has been a day of being very tired and having no choice but to nap. Again.
One more side-effect has been my legs, and to a lesser extent my arms, feeling "funny". It's almost like a constant mild case of RLS in both arms and legs. My left knee was sore last night, too. My back doesn't hurt as bad, but it does feel sort-of "funny" in the same way my arms and legs do.
Wednesday, May 7, 2008
Day 2 of Requip
My back started hurting a few days ago. I'm not sure what it's from. I've not done that much that should stress or strain it lately.
I did sleep well last night, though. I only remember waking-up once and that was to use the bathroom.
Tuesday, May 6, 2008
Lost Day
Tonight I took the Requip around 7:45p, hoping to sleep before midnight. I have a hard time believing it could be much worse than last night, so I'm hopeful. I need to have a better day tomorrow, too. If it's not, I'm not sure whether to try one more night before calling the doctor. I'm not really sure what constitutes "not tolerating well".
Ugh
It's past time to wake-up, but all I want to do is go back to sleep. I can't remember if staying awake until 1am usually causes me to feel this way in the morning. Memory problems are annoying.
I certainly didn't help that my spouse worked late, arriving home after 10pm. When that happens, he's guaranteed to move and bounce a lot in his sleep. I couldn't stay in bed. Every time he'd move -- at least once every minute -- my arms and legs would feel like they HAD to move. First I tried the sofa without success. Then I tried the spare bed. Then, back to the sofa. Finally I watched TV until I could go to sleep. I woke-up in a weird position on the loveseat and moved to the sofa where my youngest child woke me just after 6am.
So far, today feels like a day that will require at least one long nap. I'm fighting to stay awake as it is.
Monday, May 5, 2008
Disappointing Appointment
I am very, very doubtful that the leg twitching is the problem. No one has ever told me that I move my legs when I sleep. If I remember correctly, the sleep doctor said that it was slight -- even so, it's deemed "excessive".
The whole appointment and outlook has me pretty discouraged. I'm looking at months of trying drugs that, in my uneducated opinion, are treating something that isn't the problem. Perhaps it's what the insurance company requires give my sleep study results. It still means, from my point of view, that I will spend multiple months ingesting medications that aren't addressing the problem. It's frustrating. Despite that, apparently there's no alternative.
So, tonight is my first night of a two week course of Requip. I've not read the information yet, so I have no idea what to expect. I hope it doesn't cause me the same troubles Mirapex did with restlessness and frequent night waking.
I am very close to bagging the whole thing and just living with the sleepiness. With the Mirapex only making the sleepiness worse, the last thing I want to do is spend months making my life harder. Increasing misery is a stupid idea. Better to live with the sleepiness that I have, than see how many ways I can make it worse.
Normal Evening Medications
This morning I have an appointment with the sleep doctor. I'm not sure what to expect from this appointment. I am still hesitant about stopping the Mirapex before seeing him again, though. It's effect really were messing with my daily life; I hope he's understanding. Thankfully, he does appear to be very understanding.
Normally, I 'd have some caffeine this morning, but I'm not sure whether I'm better off not having any. I'd be more alert and able to effective interact with it (obviously), but I'd be more "me" without it and that might be better for him to see. I'll decide after my shower.
Sunday, May 4, 2008
A Very Typical Sunday
But the king replied to Araunah, "No, I insist on paying you for it. I will not sacrifice to the LORD my God burnt offerings that cost me nothing."
2 Samuel 24:24
Like most Sunday mornings, this gives me the strength I need to continue. I drink a highly caffeinated drink on the way to church and a cup of coffee in Sunday School and by the time the church service is ready to start, I'm tired. I successfully stay awake -- it holds my interest and when that's not enough, I do what I can. I melt once I reach our car and drag myself into the house for a nap when I get home, feeling guilty the whole time because my spouse is left to fix lunch. I wake-up one to two (plus) hours later. Yep, a typical Sunday.
Here I sit, after waking from an hour and a half of nap, spending an hour trimming bushes (not strenuously), and then driving my children to choir practice, and I'm tired, fighting to stay awake. Hopefully the large cup of coffee next to me (and the highly caffeinated drink I consumed on the way to church, and the highly caffeinated drink I plan to consume after the coffee is gone) will tide me through until I make it home. I have no idea whether I'll need to collapse and/or nap at that time.
This is so much better than when I was taking Mirapex, but the joy in the thought that it could be worse is waning. I hate the thought of wanting stimulants. I just want a life where I don't have to plan every activity around when I need to nap.
Saturday, May 3, 2008
Mirapex Mistake
I've been groggy the whole day. I've napped twice and still felt heavy and thick when I woke up. It was a considerable chore to get myself up. The Mirapex definitely is NOT helping.
It was a good learning experience, but I've lost another day.
Friday, May 2, 2008
Second Day Without Mirapex
Getting something *I* wanted to do yesterday helps. The sunshine after several cloudy days does, too.
Oops
I am more than just a bit concerned about the sleep doctor's reaction to my stopping the Mirapex. I'd rather not be seen as a non-compliant patient.
Thursday, May 1, 2008
I Think I Caught Up on My Sleep!
I did take my Mirapex last night just before literally crashing. No dinner, no good-nights to my children or spouse, just a crash.
I have no idea what to expect from today. I'd like to think it'll be a wide awake, no naps needed day. That might be a bit much to expect, but I'm open to being pleasantly surprised.