Flippy - I Rant, You Read

Sunday, July 08, 2007

early evening

Sleep - It’s What’s For Dinner

Honestly, I’ve always loved my sleep, ever since I was a kid.  I’ve always enjoyed naps, although I was never one of those people who could take a ten minute nap and then feel refreshed.  My naps were always at least an hour, and I usually felt kind of crappy and drugged when I woke up, but if you’re tired, you’re tired.  Some naps are unavoidable.  But this sleeping all day thing just sucks.  It seems like such a waste of time.  I had a nap last night for a couple of hours, then went to sleep at 4am for good…and got up for good at 4p.  Sadly, I think I’m in a chronic fatigue phase of fibromyalgia.  Or, it something that happens after I’ve overdone it by either working all night or going out all day.  I always end up paying the consequences.  I miss being normal and not sleeping my life away.  However, I don’t think there’s anything technically wrong with me other than the FMS, so the only way to beat it is probably taking Provigil/Modafanil, but it’s really expensive.  Everything that works really well for me seems to be expensive, except for the Methadone.  Cheap, but with the terrible bladder side effect that made it so I couldn’t take it anymore.  Gah, I WANT TO FEEL LIKE A NORMAL EFFIN’ PERSON!!!  I can’t even function well enough to go out for FREE meals with the family.  By the way, hi family members if you’re reading.  I’m not avoiding you, I just can’t get going.  You know what it’s like when you have the flu, or when you’ve just finished having the flu and you feel kind of okay, but are just flat out exhausted?  Well, that’s what most of my days are like, which is why you haven’t seen me in a while.  It’s nothing other than plain ol’ fatigue.  Ugh, and we need to go grocery shopping tonight, which I usually enjoy, but now feel like it takes too much energy.  We could shop online, but it always seems like they’re out of the most important items we order, and it always ends up costing more than if you go to the store and pick out the stuff that’s on sale.

You know, I always feel like when I’m complaining about crappy fibromyalgia that no one really believes that’s what’s causing my problems.  Everyone has an answer - sunshine, fresh air, exercise, stop taking pain meds.  You know what would happen if I did that stuff?  I know the answer, because I’ve done it all.  Sunshine - it’s nice, that’s all.  Fresh air - always good, doesn’t fix anything.  Exercise - makes me sore for a very long time and exhausts me.  Stop taking meds - leaves me with the pain that I started out with, and doesn’t accomplish anything.  My meds aren’t responsible for my fatigue, except for the Methadone.  Methadone made me extra tired, I admit, although it was a great pain reliever.  OxyContin is more likely to give me a little boost of energy versus tiring me out.  My Enablex doesn’t give me energy or tire me out, it just helps my bladder.  MS Contin (my new pain med that’s replacing Methadone) seems kind of useless for just about everything.  Vistaril - it’s an allergy med that helps with nausea from pain meds, and supposedly potentiates them.  I’m not taking anything else, no magical drug stew.  Just MS Contin for extended pain relief every 8 hours, Oxycodone for breakthrough pain, Vistaril for nausea (and allergies, a bonus), and Enablex for my bladder.  That’s it.  I need a reflux med, but my Protonix is too expensive.  I’m going to have to mail order it from Canada because it doesn’t have a generic.

Sometimes I wish I had something worse, just so I wouldn’t be hassled about what I do with my days and what meds I’m taking.  No one questions cancer patients about their meds.  No one questions diabetics about their meds.  No one questions people with MS about their meds.  No one questions Rheumatoid Arthritis patients about their meds.  Everyone questions me about my meds.  Why is that?  Is there something about me that has ever indicated that I’m not capable of doing research on what treatments are available?  Has anyone ever said, “Oh, that Flippy, she can’t find anything online?”  Does this seem fun?  And yes, I know that my brother thinks he can fix me, and maybe he can, but I can’t afford to go live with him.  I can’t afford to have him come live with me, and no one else in Nevada is trained to do what he does.  Now, there’s a dilemma.  So, for now, I’ll continue to look for treatments I can afford, which will allow me to work and maybe make enough to find other treatments.  By the way, this isn’t directed at most of you.  But, just a few days ago, several people suggested that I take a “drug vacation”, as if I don’t know exactly how I feel when I don’t have meds in me.  Not to mention, I’m still in the process of experimenting to see which medications will work best for me.  Plus, I see my doctor once a month at $95 a visit, so he with his medical school education and his continuing education in pain management, can advise me of me choices.  My brother, who has doctor in front of his name, can make treatment suggestions.  People who just think “Oh, pain medicine is dangerous.  People get addicted.” - those people don’t get to question my treatment.  Maybe if they’ve been reading the three fibromyalgia boards that I have, the quarterly Fibromyalgia Network Newsletters with all of the latest updates in treatment, and various books and articles…then, maybe they can add to the discussion.  But for people to just think taking me off pain meds will make things better - thanks, but no thanks.  I know what it feels like to not be on pain meds…like every few hours, when they wear off.  I think that living with that 24 hours a day just really wouldn’t be worth living.  I wouldn’t be able to to do anything then, except sit around and watch tv.  No work, no errands, no occasional trips out.  Just sitting home and coping with extreme generalized muscle pain.  I’d rather not.  Oh, and I just saw something on a UK fibromyalgia site that might be a fun little experiment for those of you who can’t imagine what FMS feels like…

the wee hours

So Exhausted

I stayed up working through Thursday night, and went to bed at around ten or so, on Friday morning.  I didn’t spend very much time awake because I got up in the late afternoon yesterday.  Then I went to bed at 4am and got up at 4p.  Still exhausted.  Got up, had some “breakfast”, took care of the pets, then fell back into bed at 10:30p for a nap.  It’s now 1:35am and I’m up, but I want to be sleeping again.  This is yucky.

Let me backtrack a bit.  I went to my doctor last Tuesday, and we agreed that I’d wean off Methadone.  It was GREAT at getting rid of my pain, and I miss it terribly because of that, but it affected my bladder and I just couldn’t stand not being able to sit comfortably.  Methadone was supposed to have some terribly horrible withdrawals, but I cut my dosage in half last Tuesday, took that for a few days (along with the new med, MS Contin), then cut out a dose here and there.  Then, a week ago, I quit the Methadone.  I didn’t have a single withdrawal symptom.  Although, my pain level is now steadily much much higher, like it was before the Methadone.  My bladder has also gone back to pre-Methadone levels, so that’s good.  But, I’m mostly exhausted.  I have some good days here and there.  Thursday, when we got the smog check and ran around all day, I felt okay.  But, I think I’m paying for it now.  I just want to sleep…all…the…time.  I’m not sure if it’s getting off the Methadone, if it’s some horrible chronic fatigue state of fibromyalgia I’m in, or what it could be.  I just know it’s annoying, and I know it’s boring to read about too.  But writing about it here helps me keep track of it in general too.  So, MS Contin (basically extended release morphine) is pretty useless for the pain.  I’m probably going to go back to OxyContin as my main med.  I’ve tried so many and only Methadone worked well (and was so gloriously cheap!), which doesn’t tell me much.  I think I may try a higher dose of Lyrica too, since it helped me the very first time I took it.  Now that it’s been officially approved by the FDA for use for fibromyalgia (the first drug to have done so), I’ve been able to find out that my wimpy dose of 150mg/day isn’t even close to what people are being given for fibro, which is 350mg - 450mg/day.  Hmmm, but one of the complaints about Lyrica is being extra tired.  So Flippy gets to choose between pain and spending days asleep.  Fun.  I wish I had a million dollars - then, I’d pay off my debts and spend a few months getting whatever treatment I wanted.  Maybe that would work.  If you know of anyone with a spare mil, let me know.