January 31, 2010

Life is a journey, not a destination.

I've been trying to work out a new blog post. I've started and stopped a hundred times. Written, deleted... there's so much I want to say, but the words just aren't coming out right. It probably has something to do with how scrambled my brain is right now.

In a nutshell, I pushed ahead like I always do, and I thought I was in the acceptance stage of things with Fibro, but I have come to realize that is not true... boy is it not true. I am actually way back in step one- denial. I'm also feeling some of the later steps too- pain & guilt, anger & bargaining, and depression, reflection and loneliness. Sure, I have made some progress with things along the way, and I don't want to belittle that... but I have a very long way to go.

As usual, I tried to skip the journey and get right to the end.

I had this thought that if I stopped coming in to work on the weekends, and cut back to working only 9 1/2 hours a day, 5 days a week, that it would be enough, and that I would get well enough to go on with life. I've always been tough, and even though I consistently get knocked back, I forge ahead. I put the needs of others in front of myself- the people at work need me to do [insert five hundred million and one things here], and if I don't do it, who will? My husband needs me, I have to make money, I have to take care of the dog, I have to, I have to, I have to... but the blanks are never to "I have to for ME." I've known this about myself for years. At least I admit that it's a problem, but it is one I have yet to tackle.

For many years prior to Fibromyalgia, I have been stricken with random illnesses from unexplainable rashes, to IBS, to depression, to shingles, all of which my doctors told me were due to stress. I'd try to do a few little things, but I've never really tackled the problem. I'm not even sure how to do that? So when I got Fibro, and things got worse and worse, I just tried to make my little cut-backs, take a bunch of prescriptions and try my best to get in some walking. It is not working. Not one bit.

Aside from the symptoms not getting better, it is really intensely difficult to be in chronic pain all of the time. And to make matters worse, in yet another effort to not inconvenience others, I have bottled this all up inside. Until a few days ago, I don't think my husband even knew that I am in constant pain, 100% of the time, always. There are no times when it subsides. There are times when one part or another gets worse and better, but all day every day I hurt, and it never ever leaves my mind. That really is enough to drive a person mad.

Then comes along the anger. Why me? It's not fair. Why do I have to be the one to suffer? Why do I have to change my life? My expectations of myself? Everyone else's expectations of me? And how do I do that? How do I still feel accomplished and successful, when I can no longer even do the things that I wanted to do before? I mean, I didn't even feel accomplished then... how can I even feel good about myself now, when I have to do less? What happens when I ask for special treatment, and it turns out to not be enough? Where is the line that my job will no longer be able to keep me there?

My therapist told me that it is an experiment. We just have to keep trying until we find what works. Her suggestion is that I should only work four days a week, and less hours on those four days. That is extremely hard for me to accept, let alone ask for... or rather tell them that I need. When did I become this person who could never ask for the things I need? Why do I just want to take care of everone else but myself? But I digress... The horrible feeling in the pit of my stomach is then what if that's not enough? What if I can only do three days? Or none at all? I hate this. It really sucks.

I rescheduled my appointment with my Rheumatologist so that I could see him tomorrow instead of in a few weeks. I want to get his thoughts on this too, before I go talk to my boss about the change. Something tells me he will agree with my therapist, or maybe be even more drastic... One thing I'm thinking is that maybe I can try to do five days, but only 6 hours a day. I don't know how I will get my work done though. As it is, I work about 50 hours a week, and I can't get everything done. (as I proofread this, I see that herein lies the problem... I think I need to find a way to erase that thought of getting everything done, and find a different path. But again, I digress...) I'm wondering inside if I am going to have to try a different career, or at least working someplace that's less demanding. Where I work, the people are very much like myself, type A, overachievers... and I'm not sure if the lifestyle I need will fit in there. I guess all I can do is try.

It's really hard to know that I have to change. Drastically. I cannot continue on living the way I am right now. And to make it more difficult, I have to realize that I can't get there in the blink of an eye. There's a road I must travel; transporter beams are not real, nor realistic.

So I must now begin, putting one foot in front of the other, asking for and accepting the hands of others around me, as I go along my journey.


  1. www.fibromyalgiatreatment.com

    This is a link to Dr. St. Amand's guaifenesin protocol site which has helped me alleviate 60% of my FM pain and other symptoms after 12 months. And it's only going to get better from here for me. The science is sound and there are links to PDF files on the front page of the site of the two research papers which have resulted from the City of Hope research done in Duarte Califorinia in 2008. Dr. ST. Amand also wrote a wonderful book about the protocol called, "What Your Doctor May Not Tell You About Fibromyalgia." You can check it out at your local library or find it on Amazon or eBay. It saved my life, to find that book when I did.

    It IS possible to reverse this illness!

    I write all about my own experiences along with way with the protocol on my blog at www.fibromyalgia-journal.blogspot.com

    *gentle hugs*


  2. Wow, what a heartfelt post. And girl, I'm sooo there with you right now. I haven't quite figured out how to say so on my blog either, but you've said it very well! What a topsy-turvy process this is! Every time I think I'm okay and I'm dealing with it well, I get slammed by a tornado and spiral downward and backward all over again. Ugh, so frustrating!

    LOVE your comment about transporter beams, lol! Oh man, do I wish!!

    So hard to know what to do regarding your job. You're the one who knows you best and knows what you can handle the best. Keep working to figure it out and know that I'm here to bounce ideas off of whenever you want (rochellelearning at gmail dot com). I'm praying for you!

    *very gentle but meaningful hug* :)

  3. I'm stuck in the same swirl of worries as you right now. I'm noticing that I'm failing at working, but working full time allows me and my Crohnie husband to have health benefits. I am wondering if I should consider reducing my hours or quit, but then I become just an unproductive burden. It's a terrible mess and I hate it all.

    I'll be checking in on you so please make sure you post! We need you.