Fibromyalgia Reality Check - Updates For My Friends

Hello my Dear Friends,

NOTE:  Long personal post, if you only have a moment, please read the bolded text at the bottom.  Thanks! ;)

You are probably wondering where I have been lately and I must say I feel like I've fallen down the rabbit hole. ;0)  Ok, well the reality of it is I have been weaning off my medications for the last month and a half and I'm doing well pain-wise (for the most part), but I have EXTREME exhaustion and along with that, some major depression.  I really don't know if it has anything to do with the meds or not. Literally, I was out of bed about 3 hours total for the entire past week, maybe up to ten days now?  I don't know, my days are blurring together with each other and each night.  I have been sleeping through the night (so unusual for me), but instead of feeling rested the next morning, within about an hour of waking up I am so tired that I have to go back to bed...and so on and so forth throughout the days.

I've been having some pain off and on and over the weekend, I walked to my craft room and my low back went out!!!  I finally had the energy to work on organization and my back goes out!  Ugh.  I'll give you a funny little piece of history here...about 10-12 years ago, I used to go to crop nights with my brother's GF (at the time) and I ended up having to buy one of those HUGE rolling totes...The biggest one they make. LOL  -- Anyways, one night after a crop, I lugged the big tote into the back of my Chevy Tracker (still have the same vehicle, btw & the same tote), and I ended up slipping a disc, pinching a nerve and permanently messed up my back!  How embarrassing, while wearing a back brace, to explain I threw my back out because of my scrapbooking tote!!!  I was around 20 or 21 (and this is before scrapbooking really was a big thing) so not exactly a "hip" reason to hurt my back.  So my point is, for years I've had trouble with it and actually just the past two years it has stopped being a pain (no pun intended), ;p until this weekend.  I am sooooo mad!!!  It's rare that I have energy, and the first time I have some in weeks, I end up throwing it out again just by WALKING into the scrapbooking room!  If anyone ever gives you grief about scrapbooking/card making being a girly thing, you tell them it's a dangerous sport and sometimes hazardous to your health! LOL ;)  So here I am, in bed again... I have 10 Easter cards to make and get out by Wednesday and I'm so hoping to get to them tonight, but I'm having a super duper killer headache.

So I mentioned above what has been going on with me for the past ten days or so, but I haven't really gotten down to the real stuff.  Here goes...Depression associated with Fibromyalgia is almost inevitable and from the get-go I was put on anti-depressants, not only for "supposed" help with pain, but for the obvious reason as well.  What I'm dealing with right now, my close bloggy buddies are mostly aware of, but I want to share with everyone just what this illness does.  Someday, if you don't already, you are bound to know someone with this illness (not just me, online). ;)

For me, these are just a few of the changes that have occurred since developing what I call full-blown or full-on Fibro.  I have had symptoms since I was a child, but it always went away until about four years ago, maybe five now...I can't even remember, which is one of the lovely effects of Fibro, BTW.  Yes, I used to have a super sharp memory, now I can't remember what happened yesterday and I'm not joking here.  It's one of the many things that gives out in your body.  One of the biggest things (no pun intended) that I'm struggling with right now is my weight.  Hence the major depression.  My entire life I have been extremely thin by nature.  I have never weighed much more than 105 lbs., usually rounding out at about 95, which for me was normal and healthy.  I was never able to gain weight, in fact, I was relentlessly teased all throughout my school years and I hated it until I got older.  I had finally learned to accept my body and love it just how it was.  It only took me about 25 years or so. LOL  But I was...Happy, that is.  When I first developed "full-on" Fibro I went into a program for healing and unfortunately I was put on a restricted diet and dropped down to 85 lbs., which of course, was too small.

I couldn't gain weight to save my soul!  I could eat more than anybody I had ever known, including my big brothers who had voracious appetites.  I was this way all through high school as well.  In fact, I once won a free dinner from a restaurant on a bet from the waiter who didn't believe I could eat all the food I had ordered.  Well I did eat it all and then some! LOL  I was soooooo proud of that free dinner and so was my dad...but I digress... Anyways, I got kicked out of the program I was in b/c I was losing weight.  Then, just as suddenly as my weight came off,  it started piling on.  I remember the exact time it started...two Halloweens ago I went to a friend's party and she served these delicious tiny cream puff pastries.  OMG, I fell in LOVE!!! I had never liked sweets and hated chocolate my entire life, then suddenly I started craving it, and loving it, and needing it.  You can guess how it went from there... In less than one year, I gained 65 lbs.  I'm up another 5 - 7 lbs. as of now and I am miserable.  I can't STOP gaining weight!

Honest to God, I'd rather have the severe pain that I had before the weight gain instead of the weight gain.  I'd trade it in a minute.  I have never ever been so unhappy with myself in my life and I can't begin to figure out what is wrong and why I'm gaining weight constantly and never losing an ounce, even when I don't eat.  :(  I went from a size 00 to 12/13 currently and still stretching.  Most of the weight is in my belly and in fact, several months ago (when I weighed about 15 lbs less than I do now), I got asked when my baby was due!!!  I was mortified although I can't blame the lady who asked me b/c my belly is huge and yet another lovely problem with either the drugs or the Fibro (not sure which), is I sweat CONSTANTLY, and profusely!  I'm sure she thought it was my hormones from being "pregnant". :p  OMG, seriously, how embarrassing!

My appetite has slowed wayyyyyy down, but so has my metabolism.  Ok, this is a little personal, but I had a SUPER fast metabolism and was very regular -- like three times a day regular.  Now, I am lucky if I go once every three days and when I do, every single time, it is sooooo painful that I dread going!  I rip and bleed and tear and cry every single time I go to the bathroom now!  I am on softeners and laxatives every single day and I'm still having severe issues; however, doctors have been NO help in this arena.  They can't figure out why I'm gaining the weight and why my system is acting the way it is.  So I have made a decision...The one thing that's changed more than anything are the amount of heavy duty narcotics (prescribed of course) that I take just to bear the pain associated with Fibro.  So without any better ideas, I have decided to get off of all of my medications -- detox.  Yes, it would be treated like a drug addict's detox, except for the fact that I decided to do a very slow wean, controlled by my pain management specialist, so I wouldn't have to go in to a clinic and be put on Saboxone (another form of methadone) to help me with withdrawals.

As far as the horrible, embarrassing, disgusting, uncomfortable sweating goes, here's what happens...I get up.  Within one to three minutes of getting up, no matter what the temperature is or what I do, I start sweating...and I don't stop, until I am lying in bed fairly still.  I get in the shower and within one minute after showering, I am dripping and not from the water.  My face drips, my hair gets soaked, my clothes get soaked so by the time I'm dressed, I feel exhausted and utterly disgusting.  I also get the horrible night sweats at least 2 or 3 times a week and I wake up, drenched, and usually freezing cold.  And yes, this adds to my depression incredibly.  I am a lover of clothes, fashion, makeup, all things girly and since the weight gain and the sweating I can't even wear clothes b/c it's not worth it to get dressed if I don't have to go to the doctor's that is...so my hubby says I should change the name of my blog to "The Naked Crafter". LOL! :0) It's so bad that it's honestly laughable sometimes!

So friends, this is what I've been up to lately.  I spend my days in bed, trying not to sweat, refusing to go anywhere b/c of the exhaustion & sweating that happens after getting dressed.  Oh yeah, did I mention how tired Fibro makes you?  It's so weird!  Some days I can't sleep but for 2 or 3 hours and then some days I can't wake up for more than 2 hours at a time, sometimes sleeping up to 18 hours a day!!!  It's so random, I can never make plans b/c I honestly have no clue how I'll be feeling at that particular moment.  How I feel physically changes literally at least every five minutes.  I haven't seen friends in months.  I have gotten out of the house (other than for doctor's) probably a total of 5 times in 6 months or so.  I haven't been able to craft for weeks and that is another thing that really depresses me.  I miss it soooo much!  When I'm gone for more than a day or two I feel so left out and like I'm missing out on so much in bloggy land.  I LOVE blog hops and challenges and everything, but when I feel like I do, it's all I can do to just keep my head on straight.

My poor hubby has to deal with so much.  As I've mentioned, my best friends in the world have ceased to be what best friends should be, so much of the burden goes to my hubby.  He's the one who has to listen when I'm in pain, when I'm mad at being fat, when I'm sick of sweating, when my friends don't call anymore.  It's hard and he's a trooper.

I want you all to know that the first few years of this I was very positive and optimistic, but anyone who develops this level of health issues is bound to lose some of their positivity.  And that's what's going on right now for me.  Now don't get me wrong...I thank God every day for the wonderful blessings in my life and for making my pain less severe than it was, but the one thing (ok several things) I really want people to know about a person who suffers from Fibro is telling that person things like "well, it could be worse" or "at least - blah, blah, blah" or "if it makes you feel better, I've gained five pounds too" :p does NOT help.  Sometimes, we need friends who will just go along with the bitching and say "OMG, this sucks" or "I'd be pissed off too"!  Is that so much to ask?  Of course we know things won't always be this way, or things will get better, but sometimes, dang it, why can't we just be real about our feelings???  Now normally I would start to apologize here and say to my readers, yes I really do have a good life in spite of the illness, but you know what?  This time, I'm not going to say that because that is, honest to God, not how I feel right now and pretending it is, is getting old.  I need friends who are going to let me be me and I need to be able to be myself, especially here on my blog.

Now the ONE positive thing I will say right now is that I do have some amazing friends here and I never forget that.  I thank you all for being there for me and listening to me and still loving me.  That is what keeps me going!  That is what true friendship is about, to me anyways.  For those of you reading this ridiculously long post, I thank you from the bottom of my heart.  Please do leave me a comment.  I love to hear from my readers and I will be back in to tell you all some super fun news and post some more creations! ;)

With much appreciation and gratitude,
Amy Jo