Friday, February 25, 2011

When will it end?

So this is my new mantra....when will this sh*t end????  I've been in a flare for over 3 weeks, as I said in my last post I thought it was waning, and in truth the pain is not as intense, but I am sooooo tired, exhausted, lethargic, I can't even tell you.  I struggle to get out of bed, and even to just sit on the couch...what is up.  I mentioned to my husband that maybe I'm getting depressed, but he thinks that the flare has just taken it out of me and I'm wiped.  Still not sure what the answer is.

All I can say at this point, though, is I hate it, I hate it, I hate it!  I can't even think of something to do, that's how low my brain power is right now.  My husband is frustrated because I don't want to do anything, and I'm frustrated because I'm bored...yet I lack the will to do something other than sit.   Things just aren't right in my world right now, and I'm perplexed as to how I can begin to change it.

I had a weird shaking/weak spell the other night.  You know how you feel when you are super hungry and your blood sugar is low.  All weak and shaky?   That's exactly how I felt, but I'd just finished dinner.  My hands were shaking like crazy and I didn't dare stand up for fear of falling over.  It lasted about half and hour and then things were back to normal.

Today I woke up with a rather unhappy it settled...slept a little more...then woke up again to the same thing.   I would just like one day at this day where I don't feel bad.  I went a long time without a major flare, and now I feel like I'm being a wimp by complaining about feeling bad for 3 weeks...but ugh this sucks.

I know that attitude is half the battle, but I just can't seem to get my mind to a positive place.  I'd like to just lay in bed, with the comfy covers over my head until all this goes away.....

feeling rather lethargic....


Thursday, February 17, 2011

flare is waning

well my flare from hell is starting to ease up...but still I'm so sore from my muscles being so tense, that I feel like I was hit repeatedly by a mack truck. I had a few days of overwhelming exhaustion, where getting out of bed and taking care of my 9mo old seemed monumental. As all things, flares don't last forever and this one has eased up considerably...yay time!
I got an Rx for a muscle relaxant and that eased the tension in my muscles a great deal...I think from now on at the beginning of a flare I'm going to get on muscle relaxers right away with hopes on staving off the worst of the muscle pain.

I've been thinking of self-esteem/confidence a lot lately, and even chatted with some other fibro sufferers today about it. I find it rather interesting how deeply this aspect of my life is affected by my disease. We came to the conclusion today, that a lot of the low self-esteem has to do with the ongoing guilt that we feel. I feel guilty for not working, for not being there wholly for my kids...for taking away from my husband, for not being the person I used to, for having to cancel plans all the time....seriously this list could go on for pages. One chat friend noted that "guilt" should be listed under symptoms of fibromyalgia...hahahaha. But why this crazy self-esteem breaking guilt? For me, I think it's partly due to the inherent underlying belief in our society that one must be an over-achieving, workaholic, pta going parent or we are failing somehow. I've been the over-achiever...I've done the work several jobs until you drop...and did it ever make me a better person???? In my humble opinion...NO! Still somehow I feel the judgement of others in this respect on an almost daily basis. The well meant, however misguided comments, like...."oh I don't have time to be sick"..."if you were more active you would feel better"..."you were fine yesterday, therefore...."..."how come you have so many sick days"..."must be nice to stay in bed so much"...." i wish I could nap everyday"....these statements have that underlying doubt, that you just somehow are lazy or your're not putting in the same effort as everyone else. I'm the one that gives these statements power, by listening to them, but sometimes it's hard not to. I know my reality and I know how toast I am after a day of much so that I can't even spend the evening with my family. I have a new "normal" now, and it involves taking care of myself so that the fibro doesn't take over. People can't see the disease or the disability so somehow it doesn't really exist to them...

On the flip side I contribute to this doubt by pretending that all is well, when talking to or spending time with family and friends. I've seen the uncomfortable looks and endured the stuttering, blundering my statements that today just isn't a good fibro to save them the uncomfortableness of it...and more importantly to save me the frustration of not being understood or supported, it has somehow become easier to pretend that I'm fine. The reality is tho, that this is NOT the easier route for me...I do have fibro, and there isn't an hour a day...any day, where I'm not reminded of this by my body. I''m never pain free...I just have ok days and not so ok I build up this unspoken resentment towards those I feel the need to act for. How F'd up is that? I'm building a resentment towards them...because of a behavior I have chosen....yikes.

I guess the conclusion is....that if I want to be true to me, I need to be upfront and honest about how I'm feeling at any given moment. Not whine...but be honest. This is the most respectful route for myself and those I love. Even if someone is uncomfortable around me, then I have to remember that that is their issue not mine...all I can do is allow them the space they need, or give them the info they desire to feel a little less uncomfortable.....

not sure if any of that makes sense, or if I'm just rambling...but that's kinda where I'm at right now.

may you all be, kind, honest, loving, and patient with those around you and especially yourselves!!!!


Friday, February 4, 2011

It's been a long couple of days...

I've tried to deny it over the last week, but I'm officially in a flare from hell. Not sleeping, completely exhausted, and I'm in icky icky pain....sigh. At first I of course panicked and decided that the savella was no longer working, but I've gained some perspective again and now I think it just is what it is a flare. I have been extremely lucky in that when I was pregnant my fibro was almost a non-issue so it's been close to 2 year since I've had a really bad i think that's why this has caught me off guard.

It's one of those flares where you just want to curl up in the fetal position and cry. The good thing however, is that I've been able, for the most part, to keep a reasonable perspective and not nose dive emotionally too. Not that I could have said that at 4 this morning, but I'm trying. Progress not perfection...progress not perfection...this mantra is keeping me going. It's just after 2 in the afternoon and I've been up for 12 hours and my little one is just happy as a clam playing, so I don't think much of a nap is in sight. Emma goes to bed early though so mom will be right behind her.

This disease is one that is constantly with you, but for me at least, still has the ability to sneak up and bite me in the butt...even when I think I'm on top of it. I have to remember that flares are just part and parcel of the whole deal. So yes life sucks right now....and of course my husband left this morning for his 2 weeks away at the baby and I are on our own once again...why would it happen any other way???? We all have our crap, and I guess this is my crap to deal I'll march on, and cry when I need when I can...and love my little girl the best that I know how.

here's hoping all of you are having a minimal pain day!