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Friday, February 18, 2011

Sleeping Through It All

Hello wonderful friends,

I have so many beautiful things to post and first of all, before I get too far, I really want to thank Kristal for putting on the Cricky Across the 50 Hop.  I realize that's old news almost, but for me it's still fresh in my mind because that was the first hop I've ever had the pleasure of participating in.  She's an amazing gal and put in a LOT of hard work to get that all pulled together for us!  I don't know how she got it all done and organized.  There were 38 participants!!!  I was also one of the lucky ones!  I won a Scrap N Tote off of her blog  Also thanks to the awesome sponsor of my prize  I won it in pink!!!  If you happen to go to their site and make a purchase, please mention my name and my blog info as they give credit for that if you do and I would greatly appreciate that!!!  It's definitely the time to check it out as I believe they are having a sale on these!!!

I have also won many, many things that I need to post, but tonight's blog post is about what's been going on with my fibro so scrapbook posting is on hold for a day or two.  Sorry to keep you all hanging!  It's been really rough going over here.  I'm not writing this for a pity party, but I want to share with you all a little bit of a glimpse into my life with fibro.  Hopefully I can help someone out there reading this.

For a while now, I've been experiencing overwhelming fatigue.  It's bad enough to make me sleep almost all day every day.  I have switched medications and I'm not sure if that's what's going on or if my Chronic Fatigue Syndrome is really just kicking in on top of the fibro or it could be possible Shingles on top of everything else (which does cause extreme fatigue as well - going in to get diagnostics done soon).  Either way, it's pretty rotten.  A typical day for me lately goes like this... I wake up between 7 and 9 in the morning in the worst pain you can imagine.  Then I take a pill and wait 45 minutes and take some more pills and pray that they will kick in.  In the meantime I either call a friend, get online, or watch TV or read a bit because there's no way I'm falling back to sleep in that much pain.  I have changed to the Fentanyl patch, btw, which is 100 times more strong than Morphine!  Well, for me, it's not doing much.  I think I was better off on my Opana which I'll explain in a later post in a Q & A format.  Anyways, then I'm usually up for a few good hours and try to get as much as I possibly can done like either posting, scrapping, email, etc. not to mention taking care of the pets and making sure I've got coffee to help keep me from pulling my hair out. :p LOL  Coffee is a must for me!

So some days I get a couple of hours in before the fatigue hits and some days I get more.  This past week it has been next to no time at all before I get so fatigued that I sleep on and off all day and all night without being able to do anything that requires me to get out of bed.  It's horrible and I am the type of person who really likes to do a lot.  I feel like a complete slug when I'm not multitasking on 5 things at once so this is like torture for me to not only have the severe pain, but to be too tired to even function.  I have had to cancel every event and meetup I've had set up.  Had to quit my very part time job at the scrapbooking store and have stepped down from my meet up group (as organizer).  I think I'm on the right track though.  I haven't quit all that just because I'm tired.  I quit it all so I can focus on what I really want to do when I have energy to spare and that is to continue building my little card business and expand it as well.  I also plan on doing more with the blog and really focus on those two things.  When you are this sick, it's impossible to focus on anything so I figured, rather than spreading myself so thin with all these other things I've got going on, I'm going to save every last bit of energy to be able to do the things I really love.  I have major goals that I want to achieve with my card making and scrapbooking and this blog and the only way I can do that is by sticking with strictly working on these things when I feel well.  I am hoping that will be soon because I have a million ideas running around in my head all the time of things to accomplish and things to create!  I write them all down now so I won't forget them.  I have been told over and over by my friends and family that I am too hard on myself and I'm trying really hard to accept that and realize that if my body insists I need to sleep, then I need to sleep.  Yes, it's boring and I feel like I'm wasting space and life, but for some reason, my body is insisting that I listen so I am.  I really hope all of you hang in there with me through this.  A lot of people don't understand how to help people with an illness because it's hard for them to hear about it and they don't know what to say.  I can tell you (being on this end) we don't want someone to come along and try to fix it all.  We just sometimes need to vent and we need some leniency.  If people get mad easily if plans are cancelled then they probably won't like being friends with me because I can feel ok up until five minutes til I'm supposed to go somewhere and suddenly, right before it's time to go, I get consumed by so much pain that I can't even move and have to cancel at the last second. Or if it's not the pain, it's the fatigue or the dizzyness or nausea. (They say fibro is like having the flu all the time and this year I have really found that to be true.) I was always very good about giving lots of notice and doing what I said I could and would do.  That has all changed for me and it's really hard to remember that and not get angry with myself that things aren't like they used to be.

Well, the tired stick has hit me again.  I'm sorry to stop mid-ramble (and sorry to ramble on for so long!), but my hands hurt and well, I've no energy left.  I will continue sometime soon, but in between I'll try to get some of my latest cards posted.  I did have some time to get some great Valentine's done!

XO ~ Amy Jo and thanks for listening!


Celeste B. said...

I love hearing how you're doing! I'm sorry you've been so tired (that would really suck). I can't wait to see what cute and crafty things you've had up your sleeve. Hugs sent your way!!!! :)

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