Saturday, February 14, 2009

I'm just not sure....

I'm just not sure where the time goes lately. It just flies by and before I know it, it's been a month since my last post. Health wise I've been in a TON of pain lately, thanks to the fms...but otherwise my symptoms have been reasonably mild. I find it soooo interesting to see the difference between how I feel with only one main symptom and how I feel with full blown symptoms. It makes a world of difference, which sounds sad I'm sure to normals...but it makes perfect sense to my fibro mind. I never in my life thought I would consider it a good day, when my only problem is constant mind numbing pain in my body. lol

The worlds we live in are so complex and the things we can get used to and adapt to are amazing. It's times like these that I need to remember when I'm feeling beaten up by life and my fibro.

Lately the prevailing thought for me has been the struggle to define my illness as an "ok" thing in my life....or I guess in other words find acceptance. It seems just when I hit a comfort level with the hand I've been dealt something else comes along and I feel anger, blame, guilt etc all over again. The most recent incident was while talking with my husband about what behaviors we'd like to see the other one work on...particularly around anger. whoa does that sound as intense as it seems? Actually the conversation was a reasonably light one...but anyways, I digress. I brought up my issues/concerns and then his response was something like " anything that I would like to see changed can't be because your sick. Some things are unfair so I'm prepared to take my unfair share of problems...." When I questioned him further for clarification, the gist of what he was saying seemed to be that when I'm feeling crappy I'm blunt, curt, short with people, angry....because I'm in pain/exhausted...etc. He feels that since we can't get rid of my illness he is just stuck with this consequence. This makes me incredibly sad! One, I'm still accountable for my behavior healthy or not, but two, to hear him feeling as helpless as I do sometimes, makes me feel like I've burdened my family unnecessarily.

I don't want it to sound like he hates being with me or that he feels obligated, because that certainly isn't the case...but how can I make that up to him? Obviously I need to find a way to circumvent the cranky behavior when I'm feeling like shit...but that too brings up a whole can of worms. My first thought is that as soon as I start feeling pain or fatigue or overwhelmed by sound/pain/fatigue/smells/(you get the picture) I need to remove myself from the situation so that my family doesn't have to suffer as well. But then I'm terrified I'll be locked in my room 24/7 and will never be with my family. This brings up a whole lot of fears for me and obviously my husband. We've agreed to come back to the topic when he gets back from work...and I know we'll figure something out...but the guilt that I feel is still ever present.

It's totally unfair that I've gotten this disease, but life is unfair...I can cope with that (most days anyways)...but the fact that it's just as hard on my family, kills me. They see me suffering and just want to help....but they have no more control over this than I do. It's good to remember that this disease is a family affair. It can't just touch one person and leave everyone else alone. That's a pretty sobering thought.

I see how widespreading this disease is when it comes to dealing with various family members and friends. One I don't like bringing it up alot because I don't want to burden others, or sound like I'm whining or making excuses. On the other hand I really get the feeling that the whole subject makes people uncomfortable, so I try to pick and choose the times I discuss my illness with those close to me. Unfortunately my husband and son don't have that luxury. They see firbromyalgia in all it's glory. I can't hide it from them like I can everyone else. I can't paste on a smile and say everything's fine when it isn't. Anyone who has spent significant time in our house since my diagnosis, has gotten a glimpse of what life is like for the 3 of us, but reality is...only we know, what it's truly like to exist with this illness 24/7...for better or for worse, that's just the way it is.

Sometimes, I feel blessed to have discovered how important self care is, because my fibro doesn't ever give me a break. I've learned my limitations and when to say no, for my body's sake. If I over do something...fibro strikes with a vengeance....but I can weigh those risks and decide if a given situation is worth it, for me. How do I weigh the same risks when it comes to my spouse or child? Wow that's not so easy.

I'm blessed to have married my soul-mate and I'm secure in our relationship and his presence here in my life...but man I hate to see my fibro affect him in such a shitty way. Ouch. I guess my lesson for today is "powerlessness" if that's a word......

hmm....thinks that make you go hmmmm.....