Tuesday, May 12, 2009

Fibromyalgia Awareness Day

In honor of Fibromyalgia Awareness Day, I've decided to blog about my life with fibro.

Fibromyalgia often starts with some kind of traumatic event. For some, it's a fall or a car accident. Others, the death of a loved one or some other kind of emotional trauma. And for some, like me, it begins with the birth of a child, although my birth experience was a traumatic one, so who's to say whether it was the birth or the trauma. Through the inept actions of an inexperienced doctor, I nearly bled to death minutes after my baby was born. I remember feeling the blood gushing out of me and thinking that I was going to die without holding my baby. I remember the look of shock on the doctor's face (which wasn't exactly reassuring). But I can't say for sure whether it was the trauma of that experience or the stress and sleep deprivation that came with having a difficult, colicky infant that never slept. I remember feeling tired and achy all the time and wondering if everyone else had as much pain as I did. Every day was a challenge.

Then six years ago, I had a massage for the first time. The next day, I woke up feeling like I'd been hit by a truck. I hurt all over. I was so tired I could barely get out of bed. I fell asleep every time I sat down, even when I was the only one watching my children. I developed these horrible pains in my back that didn't go away when I would lay down, like my "normal" back pains. Finally, I went in to see my naturopath. She did some blood work and, because of my high platelet levels, she thought I had a rare blood disorder that only gives people a few years to live. I was really scared! I refused to believe I could have this disorder so I sat down at my computer to search the internet for another explanation. Now this is weird, but a voice in my head said "look up fibromyalgia." So, I did and the light bulb went on! I KNEW this is what I had. It explained so much, so many symptoms that I didn't even realize were related. I went back to my naturopath who did the tender point test and very grumpily admitted that I was right.

In the years since then, I've learned a lot. I have helped and treated myself better than any doctor ever has. With pacing my activities (and accepting my limitations), a healthier diet, high potency vitamin supplements and daily exercise, I am usually able to function pretty well. I research drugs and then ask my doctor for the ones I want to try, rather than just taking whatever they recommend. I learned that people with fibro often flare after a massage if they haven't had one in a long time. I learned that aspartame can aggravate symptoms and should be completely avoided.

For me, the pain is a constant. The pain in my back really never goes away. It might ease up at times, but cooking, cleaning, standing and sitting up in a straight-backed chair all aggravate the pain in my back, even when I'm not flaring. The stiffness in my neck is another thing that never really goes away. Doing workouts with hand weights has helped, but I still have to be very careful of my neck or I end up with trigger point headaches that leave me completely debilitated.

The fatigue comes and goes for me, although I always have to be careful to not overdo it. I can't schedule too many things into a day or a week. I need lots of down time to rest and recuperate. I have times where I feel pretty energetic and other times where I can barely move. Exercising in the morning really helps with this, but I know not everyone is able to exercise.

The cognitive impairment (fibrofog) is another thing that comes and goes. One day I'll feel like myself and the next I feel like my brain is swollen and stuffed with cotton or something. Fog is the perfect way to describe it. I feel like my mind is shrouded by fog. I'm unable to think, unable to speak properly. I forget things, sometimes even things like how to turn on the dishwasher. I'll stand there, messing with the sink, turning the faucets on and off wondering why the dishwasher won't turn on.

Then there are the flares. Right now, I'm in the middle of the one of the worst flares I've had in a long, long time. All my trigger points are tight, tender and radiating pain. It feels like someone took a baseball bat to me while I was sleeping. Some of my trigger points actually feel bruised. Just standing hurts terribly. Exercising isn't possible right now because all my muscles feel like they could pull or be injured easily. Which maybe they can; the other night I pulled a muscle in my side just trying to turn over in bed! How pathetic is that? I'm tired and all I really look forward to is laying down. Having to do anything is just too much right now. I'm a little foggy too, although not as bad as two weeks ago when I could barely communicate with anyone. I'm not sleeping as deeply as I usually do and I'm having the worst problem with dry eyes. Sometimes I wake up at night and can't even move my eyelid my eyes are so dried out. I'm burning through the Refresh Liquigel like you wouldn't believe.

And the really bad thing is, there isn't a cure for this. The FDA keeps approving drugs that are supposed to help but, in my opinion, the side effects sound worse than the fibro.

I've learned to adapt. I am learning to embrace laziness (it's not as fun as it sounds) and to let go of perfectionism (somewhat - I still have my type-A, driven moments). I've learned to accept that I can't do things that other people take for granted, like clean my house for company and then be civil to the company. I'm sure people wonder why we never invite them over but I just can't do it. By the time I get halfway done cleaning my house, I'm damn unpleasant to be around and I can't help it. So, I just accept that entertaining guests is something I can't do. Other things are harder to accept, like not volunteering in my kid's schools. I often feel guilty about that, but what can I do?

I consider myself one of the lucky ones. I can walk. I can exercise and stay in shape (usually). But I know people who feel like I do when I'm having a flare ALL OF THE TIME and my heart goes out to them. Living with fibro is not easy, especially in our world with its endless demands. It breaks my heart to read wall posts where people talk about how their family or friends still don't get it and accuse them of being lazy or whiny. I hope that National Fibromyalgia Awareness will help people become more aware and compassionate.

Friday, May 8, 2009

Mothers with Fibromyalgia

What does it mean to be a Mom with Fibro? Well, it means that life will be a little different for that family than the typical household. Because of pain, fatigue and various other complications from this illness, you can't always live as everyone else does.
I am a mother of one daughter, age 5 yrs old. She's wonderful and the joy of my life, but life is not easy......for either of us. She often gets disgruntled that I can't always do the things she wants to do. I can't run and play. It's difficult to sit in the floor and play. I can't be in the sun for long periods of time, nor in the cool weather for very long. I'm sure if she had a sibling, she would be a little more content because then she would have someone else to play with besides myself. But as it is, her father and I are all the play companions she has on a daily basis. She does attend
Pre-K, but that will be out for the summer after 1 more week and also it's only 1/2 days. So I have to be ingenuous about ways to play with her and occupy her time.
Right now I'm in the middle of a bad fibro flair and a migraine that has lasted a little over a week. So I've been in bed a LOT over the last week. That's no fun for a 5 year old. But I try to think of ways we can play, while still lying in bed under the blanket (heat helps the pain of fibro for me). Things such as pretend camping, coloring, drawing.....anything that I can do with her without exerting too much energy, which I'm short on, or having to suffer worsening pain is good for both of us. She needs me to play with her and be with her to show her how much I love her, and I need to know that she feels loved. She also has a playset outside that she can play on. At my worst, I could probably just sit on the deck and watch her playing outside. On a descent day, I can play with her on the playset, albeit carefully! She seems perfectly satisfied with this plan. I know that on my worst days she wishes I could play with her better, but she seems to understand that Mama is sick and can't always do the things she wants. What is important to her is that I'm with her, regardless of what we're doing. Just being there makes her happy.
I've often felt guilt and then anger at what kind of Mom fibro has made me. But I'm coming to realize that we're very close because of how the illness has made us interact.
I have had fibro, arthritis and migraines since before she was born. I was diagnosed about 3 years before she came along. So she has never known the "me" in pre-fibro form. I think it would have been harder for her to adjust had it been the other way around, but I still think she would have adjusted. She a remarkable little girl and I'm quite proud of her. In spite of all the problems I have and the hard times I face, I wouldn't trade being a Mommy for anything in the world. I love it! Hopefully, my condition will improve over the years, rather than deteriorate. But even if it does not I will always be glad for the opportunity to be a Mom. My daughter is my anchor many times. She is the reason I get up in the mornings. Although fibro moms may be different outwardly, we are all the same on the inside..........Our children have stolen our hearts!
May you have a wonderful Mother's Day!!