Denial and Whining

[51anna]

About Fibromyalgia.

I was diagnosed eight years ago with fibromyalgia, after years of trying to find a dr who could figure out why I was in so much pain all the time. Once I was diagnosed, I began taking amitriptyline which worked well for me. I also changed my lifestyle as much as possible. I started lifting weights to strengthen my back, neck and shoulders which were where most of my problems were. And, I started doing yoga regularly. Within six months I felt so much better and since then the pain has been manageable. During stressful times the pain would increase, but I would pay attention and take a break and look after myself. I think I lulled myself into thinking that the disease was under control and I was fine.

About six months ago, I began intense job-hunting, interviewing and eventually starting a new job. Other things were going on in my life (issues with kids/family) and my fibro has returned with a vengeance. The back,neck and shoulder pain have returned with a great intensity. My stomach and digestion are giving me all kinds of problems. I wake up at night with awful leg cramps and sleep is something that just doesn't happen. If I had a nickel for every time I said I was tired...I've been relying on Advil which makes the pain more manageable, briefly. I alternate between thinking that I am taking too much Advil and thinking what about the quality of my life? Isn't that worth something. I am frustrated that I have to compromise. I do so many healthy things and then I am stuck with this.
I hate feeling unwell because it triggers the feeling of being out of control. I had control issues long before I began drinking. I realize that being controlling is fear-based and I have worked really hard on letting go. I'm frustrated that those feelings are resurfacing now. I do have a drs appointment in November and I will talk to her about the fibro, but I know there is really little to do.

[Sugah]

Hi, anna... I feel your pain, quite literally. It is frustrating, after having gone through a "good" period with the FMS, to face its seeming unmanageability again. Like you, I learned its rhythms and my flares were few and far between. Then life changed, and it's been more or less constant for the last couple of months. I don't have the options I had for slowing down or taking it easy - unless I plan to give up a whole lot of opportunities that I've accepted and take on the consequences that would result from that (like a credit hit for a car I had to buy that I wouldn't be able to pay for if I gave up my current position).

But I occasionally find myself asking, "Is this worth it?" I have to do what you've done with your post - say it "out loud" so that I can be reminded that pain is part of my life, but it's not my life. In other words, if I allow myself to make decisions based solely on the pain, then the pain becomes the center around which the rest of my life revolves. To keep it in proper perspective, I have to (for me) keep looking at those things I do in my life despite the pain and ask the question: am I willing to give so much power to the pain that I'm ready to walk away from those things? Be it laughter, intimacy, serenity, a sense of fulfillment, a sense of usefulness to others, learning, questioning, comforting.... any of the blessings that I've received as a result of living a sober life without alcohol/drugs/pain at the center of it - those are gifts and blessings I'm not willing to give over to the bottle (whatever form it takes) or to pain. If I do - where is the quality of my life?

I don't think that you're whining, and from the sounds of it, you're looking at it and questioning it in ways that anyone would be hard pressed to label as "denial." Assigning less importance to pain is not an easy thing to do, but it's possible, anna. All I have to do is think about my grandmother and the things she was capable of doing, all with RA and some serious back and leg problems and the occasional "sick headache" (migraines). I don't remember it keeping her from enjoying the company of others, lending an ear, keeping up with local and national news, growing and preserving her own vegetables, baking her own bread...etc. Thoughts of her have many times kept me from giving the pain increased power in my life.

I'll light a candle for you, anna.

Peace & Love,
Sugah

[51anna]

Thanks so much, Sugah, I love your post! It made me smile.

I think I wrote my post, as you said, so I could get it out there and begin the process of accepting that this is where I am now. I have been resisting fighting the situation, and it's not working.

And, of course, as you said, accepting the situation doesn't mean caving in or giving over my life. It means doing what I can do and stopping when I need to.

I think my posting here and reading your response has helped to give me perspective. For example, I have been especially interested in the long-term effects of chronic insomnia. My last dr and my present dr have both told me that long-term insomnia is as a bad for you as eating poorly or not exercising. I find it so frustrating. I can eat right and exercise, but I can't make myself sleep. So, I feel like I'm not trying hard enough. This perspective has helped to remember that it's essential to stay in the moment, which is what I have right now. The length of my life is less important than what I do on a daily basis.

[lizw]

I was diagnosed with fibro only about a year ago after getting diagnosed with MS the year before that.

I think the last 6 months or so have been about me adjusting my life/my attitude to accept these things and the required changes it involves. Prior to that I seemed to be ok for a few weeks, then I'd think I have it under control then I'd find out how wrong I was!

Like you said anna, I like to run my own show and now I can't. It actually makes me physically sick when I try to do.

Sounds like you are doing all the right things and I am glad the doc is going to do something about the insomnia. I had it really badly just over a year ago when I tried going with out the amytripdeline (spot the bad speller) and I nearly had a nervous breakdown, through lack of sleep, over a 6 week period. Seriously. It was one of the most awful expereince of my life.

Take it easy.

[Toomutch]

(((((Anna)))))

I am glad you will be seeing the doctor in November, I hope it doesn't take that long befor you begin having some restorative sleep.

I'm sorry you are going through this Anna, as I know how miserable Fibromyalgia is.

[DesertEyes]

What a wonderful thread, thanx everybody

I don't handle the loss of control very gracefuly either. I am basically selfish, greedy and I want it all _now_. Kinda like a 4 year old in a grown up body * lol *

When my mom turned 86 she decided she was tired of taking care of herself and found a nice "Assisted living" community and checked herself in. She then proceeded to teach the aerobics class, call bingo and organize pinnocle tournaments. She gave up cooking for herself, cleaning house, the yard and used that time to reach out to others. She's 95 now, and still going strong.

I have a choice with my disease. I can check myself into a hospice, take a bunch of meds and extend my life to the max. The other choice is to take a different set of meds, feel wonderful and have a productive, exciting life for a couple years. Neither extreme works for me. What I'm doing is finding a balance. Take just enough hi-power meds to allow me to have a simple desk job, and be able to go to meetings and work my program with other people.

Yesterday I felt awful. Took all my meds but I was still miserable. I asked my g/f to do me a favor and drive me to the local AA picnic, which she did. I sat out by the grills under an awning and had a wonderful time chit-chatting with friends. I didn't partake in any of the activities, I was just way too sick, but I had a wonderful time anyways. I am taking more of the hi-power meds than my doc want me to, but I've told them that quality of life is far more beneficial to me than meds.

Originally Posted by 51anna

...but I know there is really little to do.

That's what the docs tell me about my autonomic neuropathy. They have a handy little chart that shows how long people live with this disease. The longest anybody has ever made it is 10years. With my symptoms, my numbers in various tests, I fall on the _zero years_ part of the chart. None. Zip. Nada. Per all the medical knowledge I should not be alive with the kind of numbers I'm getting. Never mind working, going to meets and giving hugs and kisses to my g/f

There is a _lot_ I can do. I constantly get my docs to help me experiment with my meds. Try and find the lowest possible dose that will maintain a decent quality of life and not kill me from the side effects. I take hydrocodone for the pain, exactly as prescribed, keep a log on the kitchen counter to keep me honest and let my sponsor know exactly what's going on. I read up on the web all about my disease and the meds I take, so I know what to expect and how to deal with it. I ask people to help me all the time, have them give me rides to places and help clean my house. Yeah, my ego doesn't care for that, but it helps me maintain my quality of life. I'm sponsoring a guy who's sicker than me, and keep in touch with another guy who's also way worse off. When I'm too sick to go out, I hang around here on SR and see of what use I can be.

Yeah, it hurts _all_ the time. I _never_ feel good. My stomach and bowels are messed up, I can hardly eat anything, my blood pressure rollercoasters all day long, I can't sleep without meds and I can't get out of the bed without meds. Been hospitalized in ICU seven times in the last three years. I can barely work, got medical bill coming out my ears and it's only going to get _worse_.

Big deal. I can hear the laughter of my friends when I say a silly joke, feel the wind thru the trees in the yard between the apartment buildings, enjoy the company of nice people at my meets, and chit-chat with fine friends here on SR. My health sucks, but _life_ is wonderful. As bad as I feel it is still so much better than being dead.

There _is_ a lot I can do to make my life as enjoyable as possible. Like the alanoid who's coming over in a few to give me a massage. She is oh so expensive but oh so worth it.

Mike

[51anna]

Thanks Liz and Suzette for your support. It means a lot to know that I have friends who offer support and caring.

Mike, as always, your post is right on the mark. And, as always, when I read about your health issues, I find myself holding my breath and afraid to exhale. I don't know how you manage to stay positive and find joy in each moment, but the fact that you do helps me so very much. And, I know that there are things I can do about my disease. This thread has helped me move from denial and frustration into taking action. It's definitely time for gratitude.

[Toomutch]

Anna - It helps so much just to know we have others that we can relate to so well. So glad that you are ready to take action.
Be good to yourself...

[cmc]

Thank you Anna, for sharing your story here; I hope that things will even out for you and you will find a way to manage all the issues associated with your health concerns.

Thanks to all the rest who have shared. In my immediate family we have had to deal with cancer (twice), MS, depression, two kids with diabetes, addiction, tumors; multiple: 911 calls, surgeries, ER visits extended hospital stays. I understand some of what others go through with the types of health conditions that are range from furious and deadly to the everyday unrelenting 'same old same old' ordeals that most people could never imagine dealing with for just one day.

When I read the posts here I'm reminded of the types of strength that I 'see' in your sharing:physical, emotional, mental and spiritual.
My hat's off to all who have shared here, who face the loss of good health and manage to live so gracefully in spite of it.

[Toomutch]

Good Morning Anna - just checking to see how you are doing today

[51anna]

I'm doing well, thanks Suzette!

I needed a push to shift my perspective and, my wonderful SR friends, gave me that push. Time to move forward!

[Freedom1990]

Wow, this has been a wonderful and inspiring thread for me! Thanks to everyone, and especially Mike!

[barb dwyer]

wow, indeed!

Desert - I'm gonna print out your post and stick it on my fridge for a while!

[Dee74]

yeah thanks Mike - I had my own little 'dark time' this week - your post helped

D