Yea! I Didn't Crash!

Last week was a big week. I lived at high altitude, did my little bit of skiing, and had company. And yet I avoided crashing.

There are several reasons for this. I continued to pace carefully. I took two rest periods everyday—and when I cannot sleep I rest and practice relaxation exercises. I have started monitoring my heart rate, making sure that it rarely exceeds 60% of my maximum heart rate (a little challenging at high altitude!) And our company was entirely gracious, warm and caring. They showed unconditional love.

Unconditional love is a healing balm for your soul and is good for whatever ails you. God's love, in which I trust, is unconditional but sometimes we feel it most through other people.

Hypochondriac

Wolf Hall by Hilary Mantel is the latest book I have read with my book club. I had difficulty getting into it at first but I was engrossed by page 100 of its 900 pages. I like her portrayal of Thomas Cromwell—opposite from his prevailing image. Through his eyes we observe the rapacious world of the court of King Henry VIII as well as the turbulence of the English reformation.

I discovered that she wrote a memoir, Giving up the Ghost, that tells the story of her struggle with chronic illness. Intrigued, partially because of my own battle with Chronic Fatigue Syndrome, I read it. It is appalling what she endured not only from the illness but because of poor treatment from the medical establishment. It is tragic how her physical complaints as a young woman in her twenties were answered with psychotropic drugs that sent her spinning into a world of even more pain and suffering. Yet she describes it with grace and humor.

I have read many similar stories of people with CFS/ME/CFIDS. Why must some doctors assume that if they fail to understand the symptoms, the patient must be imagining them and therefore has a psychiatric problem? Why can’t doctors listen with compassion to the patient and admit that sometimes they simply don’t know? And not only doctors but friends and family as well? Hypochondriac is a word for when you don’t know what to do with another’s pain.

Wildlife Sighting

A few days ago I saw a bobcat. It looked like this:

 I wish I could use my own photo but it was the dim light of early morning and the cat trotted by too quickly.  It was thrilling as I have never seen a bobcat in the wild before. At first glance I thought it was a fox but, no, it looked like an enormous housecat with a bobbed tail.

My joy was tempered however by concern for the fluffy gray rabbit that has graced our property this winter. My husband and I have regarded it as our pet bunny. It made its presence known frequently; hanging out either by a drainage pipe or hollow log where it could easily escape predators. But on one occasion it failed to find safety in either of those places because I found a mere shred of its body yesterday; its one remaining little rabbit foot looking so pathetically sweet. I suspect the bobcat was responsible.

What an emotional roller coaster as I went from the high of seeing what to me was an exotic animal to discovering the torn body of our little bunny. Aw…the harsh reality of nature. I long for the peaceable kingdom!

The Mess that is CFS

I have recovered from my most recent crash and I am back on track. Through pacing, decent sleep, naps, meditation and very gentle exercise I am generally feeling okay again.

A friend referred me to the UK PACE trials study (thank you Jody!) and it has me doing a lot of thinking. The CFS/ME/CFIDS community has responded with anger and annoyance at the UK study because it suggests that CFS is not an Organic illness and that all CFS sufferers need is exercise and proper thinking. It reminds me of the time back in the days when I thought that Medicine could help me and I was in the midst of trying to explain 'post-exertional malaise' to a doctor (I didn’t know that name back then) and his response was, “You just need to get some exercise.”

Exercise has the potential to almost always result in a crash. A crash perpetually threatens to be around the next corner and when it occurs you are sent back to square one. It is as if the authors of those studies don’t really understand CFS. It makes one wonder if they worked with patients who actually have CFS. I would like to closely examine the study and see what the participants are like. As far as I have read about it, the study seems to be flawed.

It is a big mess. CFS may very well have an organic basis but there is a lack of funding to do the research. Meanwhile the many that are afflicted need money for basic survival and decent quality of life and governments such as that in the UK are resistant to giving benefits to people with an illness that they see as lacking legitimacy. When the new health care reform is implemented in the US, we are going to have the same struggle here.

What works for now!