Posted by: Little Miss | March 15, 2008

Attitude Changes and Adaptation

It’s been a struggle for me lately to have a good attitude about this Fibromyalgia. I reeled for the first few months after my diagnosis trying to understand just what this meant in my life. I went through several months of paying attention to every pain and ache and episode of fatigue to determine how to respond. It was the main focus for me as to how I was going to allow Fibromyalgia to change my life, or how I was going to continue living as normal a life as possible with it.

I finally got to the point where I was determined to just try my best to suck it up and move on, attempting to live as normal a life as possible, even while aches and pains, restless nights and sleep deprivation poked at me reminding me that everything was not normal. I was attempting a conscious form of denial. Certainly there were – and are – things in my life that I cannot change. I have to work. I have to support myself somehow, regardless of how much pain I am in. 

But as hard as I’ve tried to deny this Fibromyalgia, it has worked equally as hard to remind me that it is still here. I guess I thought that if I ignored it, it would go away or, at best, subside. I have a philosophy that says that which we focus on increases. So I guess it made sense to me that if I quit focusing on the fibro, it would go away, or at least diminish to a very low murmur. For a few brief periods, it did seem to subside and I was able to resume some things I abruptly halted several months ago – like finishing painting my home after the new hardwood floors were installed. I’ve tried this twice now. After each painting session, I’ve had a flare up in my upper shoulders and neck that literally inflamed the muscles and laid me up for two to three days. I would go to massage and get it treated and finally this last time, my therapist asked me if I was done painting. The tone was more like a sweet mother asking me if I was done trying to make something work that clearly wasn’t working for me. No, my painting isn’t done, but clearly I’m done painting.

It was a day or two after that when I had the worst night I’ve had yet with this fibro experiencing shooting, stabbing pains in my feet and legs that made me limp when I tried to walk and restless leg syndrome that kept me awake until the wee hours of the morning.

This was the first time the fibromyalgia has driven me to tears. I cried alone thinking that life has to be better than this. If this was what it was going to be like – sleep deprivation, random shooting, stabbing pains, constantly alternating dull or sharp aches, a strange syndrome preventing me from doing everything I wanted to do – I wasn’t sure I wanted to continue on. The thought of this still makes me weepy.

Even writing this now, I feel as if I should still suck it up. There are so many who have things so much worse than me. My brother has a malignant brain tumor, is alone with his two dogs in Utah, and here I am whining about my fibro. At least my fibro won’t kill me. We don’t know how his treatment is helping, or if it is at all. There are blogs that I read of people dealing with life threatening illnesses, and here I am complaining about stabbing pain and lack of sleep. In that perspective, it sounds a bit stupid, doesn’t it? Like I really should be grateful my problem isn’t life threatening, and that it could be so much worse. Right?

Yes and no. Yes, because in my head, I know this is true, and I really am grateful that other than a stupid (what do we call it anyway? disease? syndrome? autoimmune?) ailment, I am the picture of health. But no, because when in the middle of the night there’s a bolt of electric shock that sears through my feet and legs and wakes me up by catching my breath, every shred of logic and rational thinking falls away and all there is is fibro. My pain. I hate it and I want it to go away. And like a filthy neighbor who won’t move, I’m stuck with it.

I guess the next stage of grieving is acceptance. I’m not quite there yet.

Advertisements

Responses

  1. I just wanted to say that I hear you, and I have a good idea of what you’re going through. Fibro is hard to accept as a “real illness”, even when you’re right in the middle of the suffering it brings. I get down on myself for getting down too, because, yeah, it could be much worse – it could be deadly.

    But truthfully, sometimes it feels like dying.

    I haven’t found that those stages-o-grief come in any kind of orderly fashion. I think I’ve been through them all a few times. I’ll think I’ve accepted it, then I’ll have a long, symptom-free period and I’ll start to think nothing was ever wrong with me. And then I’m shocked, Shocked! when I get sick again.

    Whew, it’s late, but I guess what I’m getting at is it’s a process and it’s largely about coming to know yourself.

  2. @bottlecappie – thank you for your thoughtful comments. You are right – it is about coming to know yourself. I hadn’t thought of it that way yet. And thank you for visiting my blog. I hope you come back.

  3. you are not whining. while fibro might not be “life threatening,” living with constant pain threatens your way of life. it is perfectly understandable that you are grieving the loss of the way you once lived your life. it will take time to learn what your new “normal” is, but you will get there.

    constant pain and sleep deprivation is torture. think about how prisoners of war are tortured….sleep deprivation and pain. it breaks the human spirit. you have every right to complain and be upset.

    i know are grateful for the good days. just don’t push yourself too much. i know it is tempting. over time, you will learn how much you can handle. as i told my son when we learned of vision impairment, “it’s not that you can’t do things. you just need to learn how to do them differently.” when it comes to things like painting your house, “differently” might mean hiring someone to do it for you.

    teri

  4. y wife suffers from fibro so I started a social networking site for Fibromyalgia Sufferers And Their Families. Would you mind giving it a mention.

    http://fibromyalgia.ning.com

  5. You are well on your way to acceptance because you were trying to ignore the symptoms and still do things but I truly feel that when you do accept it you will find other ways of doing things you enjoy, it is just a matter of finding things that do not hurt too much and only doing them for limited periods.
    I started my quilting after the insomnia developed in 2000..my family just could not cope with my changed sleep pattern but I did not want to waste time [and by the middle of the night the painkillers were finally impacting the pain] so I found something that I adapted to my present ability. It hurts when I do more than 20 minute spells and when finishing off the larger quilts but boy is it a great feeling that there is something that has come out of all this. I repeat that I adapted the way I do things and it may not be the ‘right way’ but it works for me and helps ease the frustration of giving up so much.

  6. I’ve been in the place where you are a few times and I wish I could say it gets better, but you know the drill…. better one day… worse the next. I, too, have felt guilty for “complaining” when there are so many other illnesses that are worse, but then I look at my perfectly healthy family and remember a time when “I” was perfectly healthy, too. I don’t think it is fair to ourselves to compare our condition to cancer or the like… the only true comparison is how we were before FM and that gives you every right to feel as you do. And who said you have to suck it up? Granted, there are things we all have to struggle through… work, caring for our families, and such… but no one said you have hide your frustrations about it. In fact, I’ve learned that can be more damaging! You’ve gone through some major life changes, you’ve had a lot taken away, and been given things you’ve never asked for that NO ONE would want. You’ve earned the right to be angry, disappointed, frustrated… however you want to feel. Now you just need to give yourself PERMISSION to feel that way.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: