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.....

hobbz

11 comments:

Prof S said...

It's incredibly difficult to maintain a balance of what you need for yourself and what you need to give to your family. But you have to give up the guilt -- it's not like you're doing this on purpose or you can change anything. You're doing a good thing by talking about those feelings with your husband. You both can understand how the other feels and that alone can help maintain the balance.

Those of us who suffer from chronic illness carry around a lot of guilt because we know our illnesses affect others, too. But somehow we have to find a way to let it go. Awareness, understanding, and acceptance help a lot.

Glad to see you back again!

Michelle said...

Wow! Are you in my head?! Your post sounds like the continous battle that goes on at my house. I don't feel well so I am not as forgiving with the kids and at times, I am just plain mean. Yes, I said it and admitted it. This is not something I am proud of but it is what happens at times. My best friend helps out when times are really rough and I need a buffer between me and the kids.

It is a battle everyday to keep off the pity pot but my best friend and I made a deal that you can be on it from time-to-time but there is a 24hour limit. :-) It may sound silly but it works.

What a wonderful thing to have your soul mate. Just remember to work on the relationship and don't allow your diseases to guide you but your heart.

Thanks for posting on my blog. Your comments were very uplifting.

Barbara K. said...

Thank you for sharing this dilemma with such articulateness and honesty. I blog about couples and illness and have heard many partners discuss the issues you raise. There's clearly no right answer - but to stay in there and continue the communication with your sweetie is the right road.

Here's one thought - perhaps his tolerance of your moodiness when you're suffering is his gift to you. Well partners often feel helpless. This is something he can do for you.

hobbz said...

All 3 of you have such great insight! It's funny how you can be thinking one thing about having a chronic illness and you visit someone's blog and it's exactly what goes through your head. It makes the world of pain and disease a little more personal and definately not so lonely. I cherish very much every comment I get. Thanks for the support and keep trucking along.
Together WE CAN MAKE A DIFFERENCE IN EACH OTHERS LIVES :)

Jeanne said...

Hobbz,

I've been chronically ill since age 13 and I'm 40 now. One of the numerous conditions I have is fibromyalgia. As I sit here right now, my entire body hurts. As in every molecule and cell of my body is shouting at me.

I've been married for for 10.5 years and we have a 8 year old daughter. I know the guilty, crummy, left-out feelings that come with missing out on activities the body just can't handle.

The first chronic illness I was diagnosed with (in 1992) was endometriosis. I had suffered 10 years undiagnosed before that. So I have been chronically ill for 27 of my 40 years.

I mention the endo because it's how I got hooked up with a support group. In my city (not even that big of a city) there is a fibro support group. Maybe there's one near you. I mention this because talking with others who "get it" REALLY helps.

Anyway, you can't help being sick and you have nothing to feel guilty for. Easier said than done, I know. Seriously, though, you're going to have to "let yourself off the hook".

I miss out on activities with my daughter and it kills me. In an odd way, I think living with me has taught her compassion, patience, and empathy skills far beyond her years.

As far as your husband's concerned, it sounds like his reaction to things is very normal too.

I don't normally include links in blog comments but I thought that in this case I'd list just this one... because I think you might like it.

The link is a blog post I did with video of Michael J. Fox talking about "whether he would go back to his life before Parkinson's. (Be sure to read the blog comments back to this post too).

http://endendoat.blogspot.com/2009/02/michael-j-foxs-message-of-hope-captures.html

I think his comments about "going back" apply to just about every chronic illness out there.

After 17 years in support groups, I can honestly tell you that the feelings you've described are very common and normal for the situation you're in.

I have fibro stuff on my blog. If you search for fibro in the little search box in the top left corner of my blog, you should get a number of posts that pop up. Since I have so many illnesses, I sometimes have trouble with how to divide my writing time.

Also, I may have missed it but I don't think I saw it in your blogroll... There is a blog called "Fighting Fatigue" that I'm sure you'd like. There is a wealth of fibro info there.

Hang in there!! :)

Jeanne

hobbz said...

Thanks Jeanne, I really appreciate what you had to say, and I added your blog to my list of blogs/sites. So far there are not any Fibro specific support grps in Anchorage where I live, but it's something I'm hoping to work towards starting....Everything you had to say was reassuring that we are all on this rollercoaster together and our feelings are normal and will pass with work and time.
thanks and welcome

Diane J Standiford said...

After 30 years with my partner who has suffered many diseases, to feel her pain hurts the most, any anger she lets out is fine with me. Pain needs SOME way out and heck yes she will spit out ugly stuff sometimes, and she hates that like you do, but don't be hard on yourself---we understand and love you.

Anonymous said...

The biggest issue that ive had with fibro is working, Ive had so many jobs and lose them after mear days because of fibro attacks. I sit here this morning with panic attacks because I have to be at work at 10am to a new job, this will be day 4. I panic because I woke up not knowing what end to put over the can first. I feel so helpless and angry that I am a burden to my b/f. We have only been together for a year now, he was my first b/f in jr. high, my soul mate, but how dare I burden him with this? the fact that I can not work a conventional job and have NO clue how to bring money in without one. He asked me this morning if there was anything that he could bring me that would make me feel better, and the only thing I could think of was a loaded shot gun, cause I cant take anymore of this. The stress of being short on cash prompts me to find different work because I was missing to many days, puts me into a fibro attack,which stresses me out more, which in turn makes me sicker.I know it sounds like im just a big fat cry baby,, (well this morning I am) but I really do feel totally hopeless and helpless,

brenda09 said...

wow, I found someone to talk to... I was diagnosed 2 weeks ago with FMS although I have been in pain in certain places for at least 10 years it is now full blown. I can hardly work, I am part time right now and it's so so hard to do that. I dont know what to do. My family is afraid of me, walking on egg shells as they dont know what my attitude is going to be like. My body is losing this battle. I dont know what to do.

brenda09 said...

Anonymous, I know how you feel. I have a feeling I will be losing my job soon. I cant sit or stand for longer then 15-20 minutes... what job am I going to find that doesnt require this? I am in constant pain, there has been no relief at all in 2 weeks and my left shoulder even seems to be getting worse. I'm the only one bringing in money in the household so to loose even the part time Im doing now would be real bad.

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