Saturday, November 20, 2010

Behind the Scenes

I have fibromyalgia. People often ask me what causes fibromyalgia and I usually tell them that there's debate about that in the medical community. Then I tell them the theory of Dr. Paul St. Amand, which my own Rheumatologist who diagnosed me subscribes to. In short, Dr. St. Amand, who has been treating thousands of people with fibro for over forty years, who has the illlness himself, and who is NOT selling any supplements or programs or herbs, and who has scientific studies which begin to verify that his theory is pointing in the right direction, has observed that fibromyalgia is the set of symptoms that manifest themselves when there is a disorder in energy metabolism on a cellular level...system wide, on a cellular level. I will let you, dear reader, go here to learn more about that.

That whatever is wrong with me is wrong system wide on a cellular level I definitely can feel in my body.

Unfortunately, fibromyalgia is something that doesn't make me look sick...unless you can see fatigue. My hands look normal while I am typing this, but they hurt and are slightly puffy. Aches and pains are invisible. Fatigue is invisible. I don't have a stuffy face and a cough, or leg braces, or prosthetics...so it's not obvious to others that my body is ill.

In fact, as a busy mom, I learn to fake it and appear "normal" when I'm out and about. I have learned over the years how to manage my illness to the point where I can "go and do" and not have too many problems...while I'm out. Sometimes I might be a bit more propped up on the grocery cart than the woman next to me. Sometimes I might be out doing a chore and shuffling along just slightly slower than the next...but who knows, I might just be browsing, right?

But then I get home and sometimes literally fall to pieces. But you can't see THAT part (my family does, but you don't). I might come home too fatigued to move a muscle, or to finish the chores, or to do anything. Sometimes even too fatigued and in too much pain to sleep. I have the most excellent family. They pitch in, they help. They do.

You see, behind the scenes is where it all happens. When I go out I have my game face on and I do my best. A very observant person will perhaps catch me walking slower than usual because my whole body might be hurting, or I might have that sudden weird fatigue that happens where my legs suddenly stop working right and the feet drag against the pavement even though I'm telling them to lift and to walk. At that point, I can't walk. I can only shuffle...because there is literally no strength in my leg muscles to make them go. Often when I'm walking I can literally feel myself slowing down against my will.

And the painful thing is, I can't always predict when this will happen, but I can to enough of an extent to keep it pretty much at home.

I also have a worse time of day....from 3-4 pm until about 7-9 pm when in varying manifestations, I have an even worse energy dip. I can forestall this by taking a nap sometimes.

So, last weekend I was on an AHG campout and we went hiking Saturday morning. Two lousy easy miles through some woods, and that was there, and back again. On the first mile I cold feel trouble brewing. My legs were slowing down. I told my fellow leaders and went at the pace I could. On the way back, I forced myself. I made it, of course. I always do somehow. But it wasn't much fun.

Later that day, on an excursion to see a pioneer days mill, I got to the point where I was shuffling. I sat down in the rain in my poncho and waited for the rest of the group to finish what they were doing. I was done at that point. It was time to stop. But I was on a camp out and it was raining and there were four of us leaders and four girls and there was not much stopping. I rested when I could, but the rest of the evening turned out to involve breaking camp sooner than we'd all planned and driving and hour and a half in the dark in the rain to get home. I managed. But it was definitely pushing myself. I'd pay later.

I was grateful to spend the night in my own bed after taking a hot shower. Sunday comes...Church as usual in the morning. And in the afternoon, the activities of the day before came home to roost. My legs were so fatigued I could only shuffle very very slowly, and not walk. I knew that what my body needed was to sit and be still, to rest. But what my family needed was groceries. So Wes came with me, drove the car, and at the store I rode the electric cart thingy. And that's always a bit embarassing. I literally couldn't walk.

I've been on museum trips where sitting in a wheelchair was the right thing to do. I own a cane. I used to use it to help me stand up for Church at St. Athanasius. For some reason, I've not used them much since we've moved to Louisville because I'm too embarrassed. Lately I've been thinking about it. When I'm shuffling across a parking lot, going too slow for words, a cane sends a social signal that there is, indeed, something wrong with me and I"m not just being slow to irritate the cars that have to wait on me. I wish I had a handicap tag on my car. But because the symptoms of fibro come and go, because I have good days and bad days, good moments and bad moments, those are very hard to come by.

Last night at AHG someone told me I should move out of the Ohio Valley. That would cure my fibro. Perhaps if I went somewhere cold and dry I would find relief. Perhaps if I took a week long trip with my husband we could find out if my body does better elsewhere. Um...yeah. I have no money to follow up on her suggestions, partly because the reality of chronic illness in a family has an impact on that family's earning potential.

Another person suggested I should eat an energy bar. Egads! If, on a cellular level the Krebs cycle/energy metabolism is screwed up, eating an energy bar will only do one thing: Make me FAT. Or send me to the ER since I'm allergic to nuts and I've never seen a nut free energy bar.

And then there was the first person again, who also suggested that a clean diet would do the trick. yeah. Already working VERY HARD on covering that particular base, thankyouverymuch.

Why did the topic of my fibro come up so much at AHG last night? Because the girls were hearing a presentation about Venture Crew and the opportunities for high adventure activities at various Boy Scouts of America facilites around the country from Rocky Mts. adventures, Sea Base in the Florida Keyes, or Northern Tier in Canada: hiking, horseback adventures, rock climbing/repelling, wilderness canoe trips, winter camping, whitewater rafting, sailing, scuba and snorkeling. All the sorts of things I would LOVE to do if it weren't for this darned illness of mine. And yes, they do need parent leaders for these trips. So I was sad, and people were caring and observant enough to ask me what's wrong. And then I'm told to work on my fitness levels and to eat an energy bar. I'm told to move out of the Ohio Valley. I'm told to clean up my already clean diet.

Earlier in the day another person told me that fibro is caused by anger. Pfffft. That sounds like Scientology to me. It's all in my head or in my heart. And if I would just repent hard enough the problem would go away.

Um, no it's not and no it doesn't and no it won't!

I take medicine. I follow my doctor's diet (yeah, struggled with that one over the years. I'll admit) I am on a protocol to reverse this damnable disease but it is slow and it takes a very long time. And I pray. And I see a therapist.

I have more life than I have energy for. The kids and their needs can't be scheduled around my illness. On a daily basis I set aside my own needs in favor of the needs of others. I, literally, have rigor mortis (the chemistry in my cells is the same as what causes rigor mortis...'cept I ain't dead yet!) and yet I keep on keeping on as best I can.

I don't want to be the forty year old with the cane. I don't want to be the woman with no cast on her leg driving the sit down cart at the grocery store. I don't want to be pushed in a wheelchair when my family visits a museum for a day. I don't want to miss out on anything or be hampered by anything. But sometimes I am. And it makes me sad. I read an article one time that mentioned that in quality of life surveys, people with fibromyalgia came up with a much lower score than people with cancer who are undergoing chemo. Think about that. WORSE THAN CHEMO. Day in, day out. Invisible. Behind the Scenes.

Please also read this here about what it's like to live with a chronic illness.

11 comments:

thegeekywife said...

hugs and prayers for you Alana Juliana!

Laura said...

I am sorry...you and your family our in our prayers.

Anonymous said...

I can really feel for you! I'm 35, with MS, and a lot of that is what I live with too. There are plenty of us out there who if we see you shuffling around don't judge you as being inconsiderate or whatever! If we see you hobbling along with a cane, while looking young and nothing very apparent wrong with you! The neuro waiting rooms are full of people who "look just fine". Because I am slender (can't swallow well so I've starved) and very fit "looking" (while being weak as a baby) I get assumed all kinds of things about me that are really laughable, from being involved in bike racing, skiing, running, etc, and those are the things people ask me about to make conversation. Meanwhile my legs can't remember how to get down the 3 stairs out the front door of my house. My condition is progressing and it may not be long before I end up with respiratory failure because those muscles won't want to work anymore either. I don't have children. I admire you Alana SO MUCH for your faith and strength, and I praise God for his helps to you and I pray that you be preserved and healed for your precious family!

Hezra said...

I just told my hubby literally 30 minutes ago, that I worry I may have something going on... I have symptoms of pain and fatigue that just feel miserable and don't seem to match up with my life. I feel like I have flu like achey feelings that are bone deep. Every STINKING day! I am so tired of feeling tired and hurting. I hadnt realized how MUCH pain I have been in, until I had to be on pain meds for the tooth pulling scenario. Now I am done with those. And feeling miserably achey/sore and weak. I may need to see my Dr. again. do you have a certain mattress? Or any thing that helps the pain?

Rebecca said...

I hear you! Different suspected Dx here, but many of the same symptoms.

People don't see me as sick, because the only time I see them are when I'm having a good day. When I'm too sick, I don't go, except when I *must* - but that usually doesn't include seeing people I know.

countrymamainthecity said...

Thank you for posting this Alana! I, too have fibro, and a little one with special needs. No one understands how exhausting it is. I constantly get people (including family) that think I'm just being lazy when I need to just sit on the couch - which still hurts, but a little less! I finally have a good dr. that doesn't think it's all in my head, and has several other patients with fibro. Thank you for putting it out there that even though someone looks ok, you don't know what goes on behind the scenes!

Scott said...

Stay strong. If it makes you feel better, feel free tolaugh it up at my blog.

http://pooreconomy.blogspot.com/

Seems serious but its more of a dark humor.

Anonymous said...

I'm a long-term reader who doesn't normally comment, but I just wanted to say how sorry I was for your when I read this. You and your family are in my prayers. I have more sympathy than I can express with the desire not to be the 40 year old with a stick or a wheelchair. I'm 28 and I sometimes use both (thanks to arthritis) and I hate the feeling of being disabled that both give me. But they do send a signal to people that there is something wrong and people need that. I have to keep telling myself that the people who don't offer me a seat on the Underground or who would like it if I walked faster are not telepathic. I guess what I really wanted to say (in a rambling fashion) is that you're not alone.
Sally

Matushka Anna said...

I'm really sorry. It's aggravating when you are confronted on a regular basis by self-proclaimed "experts". I know very, very little about fibro, but it's enough to know just that: that I know very, very little! I would no more dream of giving advice on that subject than fly. Hugs to you.

Have you ever visited Nonna's Neuropoetry (http://neuropoet3.wordpress.com/)? You might feel right at home, on a variety of levels. (c;

Anonymous said...

I just wanted to say that I understand where you are coming from (I have MS) as I've felt similarly many many times. God bless you and your family. I will keep you in my prayers.

ragamuffin diva said...

Me too, sis. Me, too.