The Frustration of CFIDS

It is frustrating to have a condition like Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome. It is an illness that family and friends don’t really understand or accept. It hurts emotionally to feel sick and wretched and for people to think you are making it up. Some try to understand but they never really get it. They expect you to function at the same level they can and you feel like a wuss for not being able to keep up.

Most of the time when people are sick they can go to a doctor for help and relief but not with CFIDS. There may be some doctors who understand but basically the illness does not have legitimacy. There has been little research. And there has been an absence of biological markers until recently when a link has been discovered between the retrovirus, XMRV and CFIDS. Yet it is not certain what can be done. The research shows a high percentage of people with CFIDS are positive for XMRV but not all. So what gives?

I have been toying with the idea of being tested for XMRV but with the time and expense of it all, what would I gain? This is particularly when the treatment available is in the experimental stage.

I have been following one blog with great interest of a physician, who along with her daughter have been tested positive by culture for XMRV. http://treatingxmrv.blogspot.com/   They have sought help through treatment of antiretroviral medication. They have found a sympathetic doctor to treat them and monitor their progress. So far she claims it has helped. But I don’t know if I want to go there. I am moderately functional and I fear the often damaging side effects of powerful drugs. Perhaps I would take the risk if I were bedridden. But right now I prefer to take and watch and see approach.

Maud

One of the things that Kim and I did on our cross country drive home was to divert to Toronto and explore Lucy Maud Montgomery’s Ontario. At the age of 35, L.M. Montgomery married and left Prince Edward Island with her husband, Ewan MacDonald, who was a Presbyterian minister. They served at two pastorates, Leaskdale and Norval, and moved to the city when her husband retired. These places are where she wrote most of her books.

An Artist's rendering of Maud in Leaskdale

This past summer Kim and I took a vacation on PEI with my sister, her husband and their two daughters. Other than relaxing on the beach and enjoying conversation over delicious meals at the Shaw Hotel, we visited most of the LM Montgomery tourist sites. My brother-in-law coined a new word; “Anne-ing” and we did an extensive amount of this. I became reacquainted with all things “Anne” (of Green Gables) and its popular author. Since we planned to drive back to Colorado this fall, it seemed easy and appropriate to stop by Toronto and continue the tour. I had heard that the manse in Leaskdale where she and her husband first lived after they were married is now a tourist site/museum and I was eager to see it.

It was November by the time we rumbled through the greater Toronto area. We spent three nights in Oshawa on the east side of the city. I failed to realize until we were there that the museums and tourist sites were closed for the season. I don’t know what I was thinking. I assumed that because I wanted to see them and because of their proximity to a big city that they would still be open, although perhaps with limited hours. I had perused one website that said that the manse at Leaskdale would be open until Thanksgiving but I forgot that the Canadian Thanksgiving is earlier than ours—October 11 this year. But I swallowed my disappointment and thought that it was still nice to be there and we could drive around and view the countryside and the outside of the buildings where her life took place.

We spent the first of our two days in Uxbridge/Leaskdale, an hour’s drive due north of Oshawa. It was a nice sunny day, brisk, but tolerable for walking about outdoors. Uxbridge is a charming town (and also 'the trail capital of Canada') and we wandered about the outdoors of the Uxbridge-Scott Museum which houses a L.M. Montgomery exhibit but was closed. I bought a copy of Volume V:1935-1942 of The Selected Journals of the author at The Blue Heron Bookstore in town. We ran across both a gluten-free bakery and restaurant, both named Franke’s, and I was in heaven because I could once again enjoy the treats of bread and cake. We drove on to Leaskdale and easily found the Presbyterian Church. We pulled into the parking lot and as we were getting out of our car to take photos, a woman drove up. She looked at us as if expecting us but of course she could not have been. I hardly opened my mouth to say hello when she said, “Would you like me to show you the inside of the church and then take you over to the manse so you can see that too?” I was awestruck by our good fortune as this kind, friendly woman gave us an thorough tour of the church and manse. We learned that she is the president of The Lucy Maud Montgomery Society of Ontario. Both church and manse have been bought by the Society to make an exhibit of Montgomery’s life in Leaskdale. Their goal is to make the Leaskdale site one of scholarship and a deeper understanding of Montgomery’s influence on Canadian literature and the world and not so much a ‘Wonderland’ like that which is on Prince Edward Island.

In addition to learning more about LMM, we enjoyed the beauty of the rural rolling countryside. The farms scattered all over the area have the prettiest farmhouses and barns. Pastureland and fields of crops are broken up by stands of trees, pockets of forests, creeks, rivers and ponds and I was enchanted by it all.

On the second day we drove to the west of Toronto to Norval where the MacDonalds lived after they left Leaskdale. It was another pretty town, a bit more built up than Leaskdale but easy to recognize from LMM’s time. There has not been the same effort to showcase the church and manse as in Leaskdale. The Presbyterian Church continues to function as a church and it rents out the house that was once a manse. Kim opened the door of the church and called hello and was rewarded when the present minister welcomed us to come inside. He was about 30 and was reserved and shy. But he answered several of our questions and offered some information. He pointed out a photo of Ewan MacDonald on a wall of photos of all the church ministers since 1840. He showed us where Maud would perform her theatrical productions. He led us to the sanctuary which looks very much like it did back in Maud’s day except that the floor is covered by an ugly red carpet. There was an plague of appreciation to Ewan and Maud and the same hymn boards that Maud gifted to the church. Kim hinted at some questions about Ewan and Maud’s spirituality but he didn’t bite. As we left him, he directed us to the LMM garden and we delighted walking through it as well as along the lovely Credit River.

We left Norval to visit the last of the houses where LMM lived. After Ewan MacDonald retired, due to mental illness (a sad story), the family moved to Toronto and Maud bought a house. Although grown, their two sons lived at home while attending university. The house is tudor style on a bluff overlooking the Humber River and not far from the lakefront. Her old neighborhood is charming; an island of pleasant domesticity only a short drive away from the congestion of a vast city, skyscrapers and all.

I started reading her journal, Volume V, when we returned to the hotel that evening. It was almost an eerie coincidence that the first entry described her move from Norval to Toronto and I had seen those places that very day.

I would have liked to do more exploring; the University of Guelph to see its large collection of archival material and personal artifacts as well as Bala, the spot that inspired one of my favorite of her books, The Blue Castle. Maybe next time.







 

Crashing in Colorado

I recently returned from spending a little over two months on the east coast. Part of that time was with Sarah, Andrew, Henry and Julian. The rest of the time Kim and I resided at our place on Mount Desert Island in Maine. Initially I flew to Boston but I came back with Kim via car. I loved that whole experience. I think I like the nomadic life.

When I was out east I would have times of fatigue that is beyond normal but I could keep my head above water. When I returned to our home in Colorado I sank beneath the surface. Most sufferers of Chronic Fatigue Syndrome know this as crashing. Usually the crash, also known as post-exertional malaise, occurs because of more activity than I can handle. But every time I return home to Colorado I experience the same thing. I have a theory about this—in addition to or maybe because of CFS my body has a hard time adjusting to high altitude. It always happens when I fly home. I hoped that because we drove and the trip was more gradual, I would escape the crash, but no.

The crash or post-exertional malaise is painful—an all encompassing fatigue but not necessarily achy, sore or smarting (well, okay, sometimes it is accompanied by a headache and sore throat ). I can’t move and I can’t think. It has been five days and I am feeling better. Otherwise I would not be able to write this post.

The Glory of King Solomon

I would love to enter a time travel machine and observe Israel at the time of Solomon’s reign. His father’s military efforts had paid off making the nation secure and peaceable. It had wide borders and the people were happy and well fed.


King Solomon was a fascinating figure. He was king of Israel at the height of its glory. The whole world sought audience with Solomon to listen his great wisdom. He was a writer with three books to his credit in the canon of Scripture. He had an intimate knowledge of the natural world. He was extremely wealthy and perhaps one of the few men in all of history to have every material desire fulfilled.


It is interesting that Solomon was a child of the union between David and Bathsheba—the relationship that represented the great sin of David’s life. David committed both adultery and murder to make Bathsheba his wife. But God granted his plea for forgiveness. And a son of this union becomes king and reigns at the time of the greatest glory of ancient Israel. God gave David a fresh start through Solomon. It is a beautiful example of God’s mercy, grace and propensity to offer second chances.


Yet Solomon drifted away from worshiping Yahweh who gave him everything on a golden platter. It is a marvel that some people, who have all the world has to offer can completely blow it. Solomon was able to avoid disaster but he set in motion the downward spiral of the nation of Israel into ruin. First he followed after the way of the kings at that time and focused on the exclusive goals of wealth, power and an excessively large harem. Then he allowed his foreign wives to lead him astray and worship other gods. How did they manage to have so much influence on him anyway? I thought women were powerless in the ancient world. Yet they managed to corrupt the wisest man alive. The nation of God’s chosen people, for whom He cared so much, starts to unravel following the death of Solomon.

“Nature is Cruel but We Don’t Have to Be”

I loved the movie Temple Grandin. Not only was it a well done film but it was a most interesting story based on a real person’s life. It helped me understand autism better and it reveals how people with ‘disabilities’ can make amazing contributions to society and our way of living.

It stars Claire Danes who does an amazing job of portraying Temple Grandin, a woman with autism who grew up in the 1950s and 1960s when there was little understanding of the condition. While a physician recommended that little Temple be institutionalized, her mother fought the system and worked hard to teach Temple how to talk and behave, enabling her to complete her education and go onto college. Temple continued with her education to complete both a masters and a doctorate degree in animal science. Her career in livestock management has transformed the means of transporting cattle to the slaughter house so that they enter it calmly, dying without pain and in dignity. Temple has a love, compassion and respect for the animals that give us life and health. Almost half of the slaughter plants and livestock farms in the US use her designs.

That is encouraging because I believe that meat is a healthy source of nutrition for me. I know that diet is a very individual thing but my health problems with Chronic Fatigue Syndrome have made me sensitive to what makes me feel healthy and nourished.

I now wish to explore finding, purchasing and preparing grass-fed meat. I would prefer to eat meat from animals that are raised on pastureland rather than crowded livestock farms. I have learned that it is healthier for human consumption and I assume that it provides a better life for the animals. Maybe someday farmers will rip up some of the vast fields of corn (the source of the poisonous high fructose corn syrup) and wheat (the source of mammoth amounts of highly refined foods and gluten) and use the land for pasture.

Recovering the Joy

A chronic illness does not have to take all the joy out of life. My passion for hiking is an example. I have always loved the great outdoors; nature, wild life, gorgeous views, and the invigoration that comes with exercise. I formerly held visions of spending the rest of my life conquering the ‘fourteeners’ of Colorado. But then Chronic Fatigue Syndrome invaded my life and I had to abandon those dreams. It was very painful. But I have come to the realization that I can continue to hike and enjoy the outdoors. It simply has to be done in smaller pieces.

Acadia National Park is a wonderful place to hike with trails for people of varying abilities. For those who love to hike but are restricted by a health problem, there are many short sweet trails winding through some of the most stunning beauty. It is a treat and I’m relishing every bit of it!

I do lose the opportunity to boast. Saying, “I climbed the 173 foot summit of Bar Island!” is not nearly as impressive as “I climbed 14,115 foot Pikes Peak!” But maybe there are more important things than my pride.

Facing Reality

I may as well admit it. I have a chronic illness. I have been struggling with this health problem for ten years yet I maintain this stubborn notion that it will finally go away. I persist in thinking that I will find the cure. True healing is right around the corner and I’ll get back to normal. But it doesn’t happen. I have given up on doctors as far as this condition goes. There are some things that help and I have found ways to cope. But will it ever completely go away? I don’t know and to be honest it doesn’t seem likely.

Over the years I have followed a pattern of desperately searching for answers, surging with hope when I come across a promising discovery and aching disappointment when the answer fails to be the ultimate solution.

Pride and shame keep me from admitting the obvious. It is painful to admit that I am flawed—that my body is broken. It is particularly painful to tolerate such little physical activity after previously perceiving myself as relatively athletic.

There is a certain comfort in acceptance. I can let go and quit fighting and pretending. Acceptance does not mean giving up but learning to adapt to life in a new way.

It has been a long journey but the following are things that have helped me so far:

• Practicing the relaxation response, meditation, and proper breathing technique
• Careful pacing of activity and rest
• Overcoming insomnia through the Conquering Insomnia program
• Eating low-carbohydrate and gluten-free
• Finding comfort from the myriad personal blogs on living with Chronic Fatigue Syndrome/Fibromyalgia/ME

I am staying with our daughter and family for a few weeks. My main job is helping out with care for 7 month old Julian while she waits for a more permanent child care situation. Sarah and Andrew are very busy with their jobs and parenting highly energized three year old Henry and baby Julian. I wish I could do more to help them but my energy levels get depleted so quickly. I keep hitting the wall of numbing fatigue, headache and sore throat and then I have to back off and rest until my energy reserves are replenished. This is very frustrating.