Thursday, March 31, 2011

My Old Friend....

Well it seems my old friend, fibromyalgia is settling in to stay.   I'm over my flare, thank god, but it seems that I'm just back into the same old dance with more break while being preggers, and the lull afterward.  So I guess it's be thankful for the reprieve and continue putting one foot in front of the other and dealing with symptoms as they come.

Over the last little while I've noticed that my pain seems to be increasing bit by bit, I'm taking an extra tramadol here and there, more frequently.  I'm scared that the savella isn't working as well anymore...but hoping it's just a simple thing.   I'm off to Canada for two weeks and will be back at the end of the month.  Going to make an appt to see the doc and discuss things for when I get back.  I know of folks that take 100mg of savella twice a day, where I'm only on 50 right now.   I'm also wanting to look at getting off the tramadol, I've been taking it for 6+ years now, and recently found out that it can affect sleep.  From my research it seems that MS Contin is a reasonably successful drug, as it is time released...but the scary thing is it is morphine...and that's upping the ante a bit.  Not sure what to do, but I guess between my doctor and me, we will figure something out.

I worry because I tend to become resistant to meds over time, which doesn't seem uncommon amongst my fellow fibromites.  Eventually though, I'll run out of options, is my big fear.  Will the disease progress that far?  or will it just kind of hang out here and I'll work around it?   I've already altered so much in my life to deal with this disease and when I talk to folks who are in wheelchairs or really restricted movement wise I get scared.   I use a cane periodically, but my pride keeps me from using it as often as I should...and I tend to only use it when I'm pretty certain I won't be around anyone who knows me.  I know this isn't a healthy way to deal with my situation...but it's what I do.  Trying to get over that stigma that I have.   I worry because people already don't understand the symptoms that come and go, and that I have good and bad days....what will they say if today I have a cane....and tomorrow I don't?   And why the hell do I care?????   That's the more important question.  Why is my self worth all of a sudden reverting back into what others think of me?   I feel like I'm taking steps backwards.  It's easy to forget how wearing/tiring constant pain is, and when I'm worn down, I start doubting myself......lots of opportunity to  work on

hope this message finds you well and having a good day!


Tuesday, March 15, 2011

new symptoms

So the anxiety of last week has lessened and now I'm into a no sleeping phase of fibromyalgia.  I go through these periods frequently...sometimes it's just a couple nights where sleep eludes me and other times it can drag on for days/weeks.  I'm hoping this stint of no sleep is a short one.  To make matters worse, my daughter too has decided that she needs to get up 2-3 times a night...and not just for a bottle, but to hang out for an hour or two.  So I'm up with her, and then when I get her down, my body won't sleep.

It is the most bizarre feeling to be totally exhausted and not be able to fall asleep...i just lie there and lie there, but sleep won't come.  I'll read until I can barely keep my eyes open, but as soon as I turn out that light, sleep will not come.  My body, however would be more than happy to sleep all day long.  I've heard several folks with fms say that they can't sleep at night, but can sleep all day.  Yesterday I forced myself to stay awake all day with the hopes that my body would crash with exhaustion last night, but no such luck.  Everything seems harder, bigger, more overwhelming when I'm tired...I'm feel like I'm totally raw.  Last night I was listening to music from my past and I started crying for no reason...that's just me on no sleep.  If I get frustrated, I cry...and just about any little thing can frustrate me.

I also feel like I'm on the verge of getting sick...I have the symptoms of a cold, but not quite if that makes any sense what so ever.  My throat feels like it's on the verge of being sore and my head is on the verge of being congested. I awoke with a migraine....but I hate saying that I am getting sick, because more often than not it's my fibro, and it all goes away without me actually getting sick.  What an evil disease this is...knocks you down and then kicks you while you are least that's what it feels like right now.  I know I shouldn't give human qualities to my fibro, but sometimes it really does feel like the disease has a mind of it's own and it's just f'ing with me.

So on I go, I had such a nice break from the disease when I was pregnant and now I'm remembering what it's like to be back in the trenches with day after day of symptoms.  There aren't really days that are good in terms of no symptoms...there are just days where the symptoms are more easily lived with than others.  This is where I walk a fine line, with becoming too focused on the fibro.  When I do that I lose sight of me, and I let the disease become me...instead of focusing on me, who has fibro.  Does that make sense?  I am NOT my disease, but when I focus too much on the symptoms...I get in this circular spiral that quickly takes me to a dark place where I let the disease have all the power over my life and I feel helpless, and weak, and I get into a poor me kind of state.   I need to find a way to balance the daily struggle that I face, without losing sight that I still have control over my life, and while I can't control the fibro, I CAN control how I manage it, and deal with it on a daily basis....I guess the fact that I'm at least now aware of when I'm slipping, is progress.

so that's my thought for today....hope all of you are having a minor fibro day!


Tuesday, March 8, 2011


ANXIETY is the word that haunts me today and the past week plus.  I've been waking up with overwhelming anxiety and I'm not sure why.  Today I have 2 appts. and I feel like I'm about to walk in front of a firing night when the day is done, I feel not too bad...but until baby is in bed and I'm sitting quietly on the couch I'm stressed.
Part of my stress right now is worrying about my health and ability to function when my husband is away 2 weeks a month.  As you know I recently went through a really bad flare, and now it seems I'm paralyzed with fear that this will happen again.  It happened when my husband was gone and I got through, but the experience was less than pleasant and I'm so worried about it happening again.  I know that it will, and when it does, I'll get through...but convincing my emotions to accept this logic is proving difficult.
A friend suggested I see my doc about anxiety meds...and yes I agree, I probably should, but even that terrifies me.  I'm trying to be gentle with myself and not invoke unfounded judgement...but part of me is so frustrated with how I'm feeling right now.  It used to be so easy...and now i feel like a pile of goo...and I hate it!  i see my attitude slowly declining lately and I can't seem to reel it back in...maybe I just need to go through this and get to the other side.

this too shall pass
one day (moment) at a time
what doesn't kill us makes us stronger
it's ok to be where you are
you are not your disease

I agree with all of these...however at the moment I'm struggling to believe them and accept them.  I'm like a toddler kicking and screaming on the floor.  I don't wanna be sick...I don't wanna be sick!  I run all of this through my head a thousand times at day...which it just dawned on me, might be contributing to the anxiety level.....
All I have to do is get through this next minute...