Laughing, when it's No Laughing Matter

Once again Adrienne Dellwo has a timely fibro article at About.com, this particular article is about the importance of keeping your sense of humor through it all.

And you thought nothing could be harder than fibro. Now we expect you to laugh too? Uhmm, yep, we do. We hope you will laugh.

Laughter is known to have wonderful health benefits, and more than physical health it can help your mental and emotional health as well. Even with illness and pain pounding down our door and moving in, the importance of being able to see humor in life can't be underestimated.

I can't pretend to know what you are experiencing when that overwhelming feeling of fatigue and pain and fog descends, but I know without a doubt that finding something to chuckle about - even if it's yourself - will help to lift the weight of your reality.

Laugh and laugh hard. Look for humor in the hardest moments. Remember that you are human and imperfect and that's OK, laugh at yourself when you can.

Life isn't all comedy, that's for certain, tragedy is definitely part of it. But the way we can get through tragedy is with humor, light-hearted, respectful, brain-clearing humor.

So, although the popular song is "I Hope You Dance"....I would change it a bit.

I hope you laugh. And laugh more. And laugh again. And keep laughing, even when it hurts.

Laugh, even when it's no laughing matter.

Things That Go Bump In The Night

We have all heard the phrase..."things that go bump in the night." Weird things, strange things, spooky things...things that make you scream and moan. Frightening, but imagined things.

Fibromyalgia has its own weird and sometimes frightening things that make patients of the disease moan, but these things are not imagined. These are painful and real things.

Fibromyalgia can be caused and aggravated by a lot of "things that go bump in the night (and day)." Anything that startles you, sudden jolts to your body, loud noises, and bright or flashing lights are just a few strange things that can "bump" you from a relative comfort into instant pain.

For me, I can only equate this kind of cause and reaction to when I was in labor. Every ounce of my focus and concentration and energy was zeroed in on the labor pains I was enduring. For a fibro patient, it isn't too far from reality to say that every bit of their energy, focus and concentration is often zeroed in on the aches and pains they are experiencing as a result of their fibromyalgia.

In both of these cases, in labor and with fibro, a sudden ANYthing is a jolt of some type, and not a welcome diversion. Loud noises, jostling of your bed or chair or car, bright lights, flashing signals, startling sounds - all of these things can actually be fibromyalgia-pain triggers; one reason could be because they take the person's focus away from the conscious and subconscious onging effort to manage their existing pain.

Research indicates that a likely cause of fibromyalgia is some type of trauma to the patient which can typically be traced to the onset of their fibro symptoms. Likewise, aggravated symptoms can be linked to aggravating occurrences - loud noise/abdominal pain, etc.

Things that go bump in the night: imagined for most, but very real for fibro patients.

So watch those corners, dim the lights and turn the music down a bit; and maybe even say a little prayer:

For goulies and ghosties and long-leggedy beasties
And things that go bump in the night (and things that cause pain in our friends)
Good Lord, deliver us! (The Cornish and West Country Litany, 1926)

Yes, I can do that.

Giving yourself permission is a key factor in living a full, non-guilty stress free life with fibromyalgia. Once again Adrian Dellwo shares timely insights in her column on About.com through comments made by others who also have fibro.

I have watched my daughter struggle to keep up, not because she doesn't have the will, or the energy, or the capacity, but because she has the limitations of fibromyalgia. We recently discussed the need for her to think ahead and manage her time and energy wisely. She can do anything she wants, she just can't do it all at once like some others can.

Giving yourself permission is not just about say yes, it's also about saying no. YES, I would love to do that, but NO, I can't do it today. No, I can't walk for three hours, but yes I would love to meet you 1/2 way and walk back. Yes, I can help with the fundraiser, but no I won't be able to stay all day.

You get the idea.

Life with fibromyalgia is about your choices, your decisions, your self-imposed parameters. Don't ever hesitate to take charge and tell yourself no, or even better, yes!

Not Too Tired to Write a Letter

I was watching the commercials on TV this evening and became rather irritated by the insinuation that anyone who is feeling a tired should ask their doctor if they have fibromyalgia. Really?!??

The commercial I watched is not the kind of publicity we need, in fact, it's the opposite of what we need. The commentary used is exactly what makes people doubt the reality of fibro. This misleading information encourages an awareness that we don't want, one that is not based on the reality of fibromyalgia.

I get tired every darn day, but I don't have fibromyalgia nor should I ask my doctor if I do. And my "tired" does not even begin to compare to my daughter's tired.

We have to be real about this. Tired does not equal fibro. Tired people probably don't need fibro meds. Correct diagnosis and best practices are critical, and appropriate prescriptive medicines are key.

Let's hope that the pharmaceutical companies who are profiting from the new medications being marketed for fibromyalgia patients will be more responsible in the future with their advertising campaigns. I appreciate what they are doing in their R&D departments, just as I appreciate that they need to make a profit, but they still need to keep their advertising honest because when they don't it hurts our efforts to increase awareness of the reality of fibromyalgia.

In the meantime, while we're hoping for truth in advertising, I am going to write a letter to the maker of Lyrica, maybe you should too (oh yeah, it was their ad). They are making a huge contribution to the relief and control of symptoms and pain related to fibro, but we still need to demand forthrightness and honesty in promotion of their product because that is what will help our cause globally and for years to come.

Fibromania is Growing

More and more blogs are showing up on the web about fibromyalgia. More twitterers are tweeting about fibro. More articles are being written. More patients are being diagnosed.

And more doctors are recognizing fibromyalgia as a real disease that needs monitoring, treatment and accurate, individual diagnosis.

Fibromania is growing. And together, patients, parents, families, doctors, counselors, research foundations, supporters, we will beat this. Hang in there!

What Do You Miss The Most?

I just read a great article about fibromyalgia patients and the changes they have had to make in their lives.

The defining question was "What Do You Miss The Most?", because the reduced level of energy, the irritating and debilitating pain, and the reality of living life a bit slower combine to mean that something has to have changed, something has been sacrificed for better health.

What is it?

The contrasting articles about fibromyalgia patients who have continued or returned to their favorite activities after giving a lot of thought and preparation to a different approach are reassuring. Some say you don't have to give up anything, but that doesn't mean you wouldn't miss something.

You might miss the level of energy you used to have. You might miss being able to live spontaneously and not worry about packing meds and rationing activity and sleep.

You might miss living without the knowledge that you have fibromyalgia.

Whatever it is, you are missing it and we need to remember that. But, having said those words, we also need to remember that you have a new reality with new opportunities, you are a new person with a new perspective on life because of your reality.

Celebrate who you are instead of regretting what you miss.

You deserve it.

You Can Find Your Own Path

If you take a few minutes to read the article below from The Durango Herald, you will understand the title of this post. Liz Harrison's life story from 13 years of age forward sounds very much like my daughter's and probably will sound very much like any teenager who is finally diagnosed with fibromyalgia.

In the article, Liz's Mom talks about owning your disease and then managing it. She makes a very important point. Anyone with fibro should be working with specialists in the field, talking to others with the condition and learning as much as possible so that they are informed, current and have the ability to make good decisions regarding their lives.

We can all learn from each other and encouraging stories from fibromyalgia patients can only give hope and provide a goal for others to work toward.

Enjoy the article and never forget that the path someone else is on does not have to be the path you follow.

In fact, it probably shouldn't be.