A taste of freedom...

There are 2 types of people in this world. Those who are truly grateful for any glimpse of light in the darkness. And those who forget the wonder of the moment almost before it's over. Unfortunately I definitely fall into the latter category. Once I catch a glimpse of life as it 'ought to be' or 'should have been', the discontent of life 'as it is' rises almost immediately.

Monday was a fabulous day for me. After months of worsening fatigue and pains, suddenly, I was rewarded with one of those 'miracle days'. I woke up fresh in the morning for a doctor's apptment, had to walk quite a lot in the hospital but didn't get knocked out, did two loads of laundry, watched TV, played word games on the computer, tidied the kitchen cabinets, served myself lunch and set up the living room.

I know that to most healthy people this may not sound like much work for an entire day, but any of us who have had contact with illnesses like CFS/FM, can recognize what a momentous day it was in my life. And maybe that's why I was so scared to end the day. What if, while I slept, the magic wore off? What if I collapsed again tomorrow?

It's difficult to not think like this. It's difficult to stop myself from doing all that I can, simply because I can in fact do it (making any sense?). You would think that after so many years of struggling with the issue I would have learnt the importance of resting even when I'm not tired. But whenever I do get a 'normal' day, this is still almost impossible for me.

The excitement of having a good day wouldn't let me sleep all of Monday night. Finally fell asleep at abt 6:30a.m. the next morning and am, surprise, surprise, now back to spending the whole day in bed.

Moral of the story - Take each day as it comes and learn to recognize/appreciate the precious moments in life.

And, as of today, that's precisely what I'm going to do!

My disabling chronic illness is more real than your imaginary medical expertise!

Funny gifts for someone with a chronic illness...check it out...made me laugh:

http://www.chronic-illness.org/cfs_t_shirts_gift_ideas.html

It's been a long 3 months

It's 1:29 a.m. I am siting in bed with a heating pad, under 3 comforters, sipping Theraflu in much the same manner that a connoisseur may enjoy a fine vintage wine. My husband is snoring (rather loudly - I can easily hear him through my industrial strength earplugs!) on my left. On my right is Lola, looking none too pleased that I've disturbed her beauty sleep by switching on my bedside lamp.

The last few months have been exciting but exhausting. My sister-in -law J. has been staying with us for the past 4 months as she prepared to take the American National Board of Dentistry Exams. For the past 3 weeks, my parents have been visiting us from India. We've also moved house, visited Seattle and Mt. Rainier, and done a family trip to Vegas and the Grand Canyon. As I said, exhilerating, but so exhausting.

During this time I've gone through many ups and many downs. Sometimes, the fatigue got too much for me. And I would feel trapped. Frustrated. Imprisoned in my own body. My soul yearned to soar, but instead I would wave goodbye from the hotel room as everyone else went for a hike or to the casinos. And I would wonder what I had done to deserve this.

But each time this happens, I now take myself back to my trip to the Mt Rainier National Park. When we went to visit Seattle, Mt Rainier wasn't even on our 'places to visit' list. My husband almost had to drag me there. And now, I thank him for it everyday. Memories of Rainier have become my own personal place of peace.

I don't think I can ever explain the overwhelming sense of peace and 'rightness' that I felt sitting in those mountains surrounded by trees and brooks, no soul or sign of civilization in sight. Just a magnificent snow covered active volcano forming a glorious backdrop to an endless panorama of hills covered with green trees. In that moment, all my concerns and worries and stresses just disappeared. All that mattered was the nature around me and the contentment within me.

Rainier changed me in a fundamental way. Now, when things threaten to overwhelm me, I just transport myself back to those hills, overlooking a vista of pine trees and lakes, and nothing seems important any more in face of such majestic natural beauty.

For the first time in my life, I didn't care about work or studies, diamonds or cashmere. All I needed was a pair of jeans and the people I love around me. And even though I couldn't do the 15 mile hike that I would have loved to do, the rangers helped me find a hike that was 1/10th of a mile and being able to complete this gave me more joy than you can possibly imagine.

I think that all of us, especially those of us struggling like a condition with CFS/FM have to find our own personal Rainier. A place which is always inviting, where we can be ourselves and lose all the accumulated despair and frustration. A places that renews and re-energizes us. A place that makes us thankful for all the things - big and small- that we already have in our lives and perhaps do't give enough importance to.

I hope those of you that follow this blog have already found such a place (I would love to hear abt these), and I strongly urge the rest of you to find your Rainier. It will give you more joy than you can imagine!

Pls vote for Sue

Sue has been a wonderful voice on the web for those of us suffering form invisible illnesses like CFS/ FM. Her posts are insightful, humorous and helpful. Pls do take a moment to vote for her.

for Sue J. http://www.livewithcfs.blogspot.com/

Chronic fatigue syndrome linked to 'cancer virus'

• 19:00 08 October 2009 by Ewen Callaway in cbsnews.com

Chronic fatigue syndrome, the debilitating condition once dismissed as "yuppie flu", has been linked to a virus that is also common in people with a certain type of prostate cancer.

It's still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery is sure to reignite the debate over whether CFS is fundamentally a psychological condition or a physiological one.

"It's a contentious area that lies somewhere between medicine and psychiatry," says Simon Wessely, a psychiatrist at King's College London who has been vilified by patient groups for his scepticism of cut-and-dried explanations for CFS and his assertion that psychological factors may play an important role.

CFS is characterised by cramps, sleeplessness, weakness and headaches. It affects more than a million Americans and a quarter of a million Britons, yet its cause remains elusive.

Virus clues

Previously a number of viruses, including herpesviruses, enteroviruses and Epstein-Barr virus – which also causes glandular fever, or mononucleosis – have been suggested as triggers for CFS. But these have only been found in a small minority of people with the disorder.

A team led by Judy Mikovits at the Whittemore Peterson Institute in Reno, Nevada, decided to investigate whether XMRV (or xenotropic murine leukaemia virus-related virus, to give it its full name) might be linked to CFS after the virus was reported in 2006 to be present in the tumour tissue of patients with a hereditary form of prostate cancer.

It is still not clear what effect the virus has on people. But the fact that this type of prostate cancer and CFS have both been linked to changes in the same antiviral enzyme led Mikovits to wonder whether XMRV could playing a role in CFS too.

Sensitive test

When her team analysed blood taken from 101 CFS patients, 68, or two thirds, tested positive for XMRV genes, compared with just eight out of 218 healthy controls. The next step will be working out whether XMRV causes CFS or just grows particularly well in people who have it.

Mikovits suspects that XMRV causes CFS. She says her team has found antibodies against XMRV in 95 per cent of the nearly 300 patients they have tested, but these results have yet to published in a journal. Antibodies are a more sensitive test than looking for viral genes, as they pick up people who have had XMRV in the past, not just those who still have it.

What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus.

"XMRV infection of [natural killer] cells may affect their function," says Jonathan Kerr, a researcher at St George's, University of London, who was not involved in the study. "This does fit." He adds, however, that "an independent study to confirm these findings is very much needed".

Childhood trauma

That sentiment is echoed by John Coffin, a virologist at Tufts University in Boston. "This looks like a very, very interesting start," he says. "It's not impossible that this could cause a disease with neurological and immunological consequences, but we don't know for sure."

Wessely points out, however, that XMRV fails to account for the wide variety of other factors associated with the CFS, including childhood trauma and other infections such as viral meningitis. "Any model that is going to be satisfactory has to explain everything, not just little bits," he says.

If XMRV does turn out to contribute to CFS, this could point to new treatments. In the UK, patients are prescribed exercise and cognitive therapy, which seems to work for some patients, but not for most. Such failings underscore the need for therapies that go after the root cause of chronic fatigue syndrome – whatever it turns out to be.

Journal reference: Science, DOI: 10.1126/science.1179052