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

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know (http://invisibleillnessweek.com)

1. The illness I live with is: Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM)

2. I was diagnosed with it in the year: 2002

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: I can no longer do the things I love - dancing, swimming, running, anything that requires energy

5. Most people assume: It's all in my head

6. The hardest part about mornings are: Never feeling well rested or refreshed

7. My favorite medical TV show is: Gray's Anatomy

8. A gadget I couldn’t live without is: My laptop. It's my link to the outside world.

9. The hardest part about nights are: Lying awake for hours...not being able to sleep because of the pain.

10. Each day I take __ pills & vitamins: 11 (which is less than most people with CFS/FM)

11. Regarding alternative treatments I: have tried homeopathy, naturopathy, acupuncture, pranic healing, yunani - none of these have worked. I have found that yoga helps if ptacticed regularly.

12. If I had to choose between an invisible illness or visible I would choose: Visible. At least people would be able to see that I'm not making it all up.

13. Regarding working and career: Had to give up in 2002 because of my illness.

14. People would be surprised to know: I have been exhausted for 7 yrs. And in pain almost all the time. I try not to make a big deal about it, but it is a huge deal to me.

15. The hardest thing to accept about my new reality has been: That I (or anyone else) don't understand my illness. I don't know whether a cause or cure will ever be found for it.

16. Something I never thought I could do with my illness that I did was: get my yoga teaching certificate

17. The commercials about my illness: Have just started. I'm glad people are beginning to recognize fibromyalgia as an illness. Unfortunately still nothing about CFS.

18. Something I really miss doing since I was diagnosed is: Running. Dancing. Working. Studying. Being self-reliant.

19. It was really hard to have to give up: my life as it was.

20. A new hobby I have taken up since my diagnosis is: Gardening (well, I just started 2 days ago)

21. If I could have one day of feeling normal again I would: go sky diving followed by dancing all night.

22. My illness has taught me: the importance of being healthy.

23. Want to know a secret? One thing people say that gets under my skin is: Snap out of it (well, duh, thanks...that never occurred to me for 7 years). If you can't say anything helpful, pls don't say anything.

24. But I love it when people: people help me in the most unexpected ways.

25. My favorite motto, scripture, quote that gets me through tough times is: "This body is perishable, consciousness is of a nature to dissolve, and all objects of clinging are impermanent, suffering and subject to change." The body is only a temporary vehicle. It is my soul that will continue. And my soul is only a part of the Universal consciousness. So why despair for the body?

26. When someone is diagnosed I’d like to tell them: Learn to listen to your body. Rest before you get tired. Don't compare yourself - not to anyone else and not to yourself before you got ill.

27. Something that has surprised me about living with an illness is: Millions of dollars (& pounds) are being spent on researching CFS, over 1 million Americans suffer from it, yet we are nowhere close to discovering what it is or to finding a cure.

29. I’m involved with Invisible Illness Week because: I want people to recognise that an invisible illness can be as debilitating as a visible one.

30. The fact that you read this list makes me feel: Happy, that you cared enough to read it.

M.O.B. - Aug 14th

M.O.B. - Aug 13th

Here are some more pics of Zaara:

http://www.facebook.com/album.php?aid=136430&id=572157728

Do dogs lie?

Fist of all, thanks for your good wishes everyone...I'm feeling MUCH better today! Yaaaaaaaay!!!

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The other day, I had a very interesting experience with Lola. It was a really warm afernoon and I decided to take

Lola to the front of our building to hose her down. Lola looked at me put on the yellow shorts (the ones reserved for bathing the doggie), take her towel and shampoo, and wear my rubber slippers. She knew what was coming and she was not a happy dog.

Anyway, off we went with Lola on the leash. At once, she started to sniff frantically in the grass and walk in the opposite direction. It seemed like she had some urgent business to attend to, so I followed her. In a little while, I noticed her looking at me from the corner of

her eye. When she realised I was looking at her, she quickly bent her head down and pretended to sniff deeply while leading me further away from the hose. This happened a couple of times before I caught on - my darling dog was trying to fool me!

She had realised that fighting or begging wouldn't stop the bath, so she was now trying her hand (paw?) at deception!

Here's an interesting article which says that dogs are as intelligent as 2 yr old children: http://news.yahoo.com/s/hsn/20090810/hl_hsn/dogsand2yearoldsonsamementalplane

Do let us know if you've had any such experiences!

Choices...

I do have a choice.

I can stay home, make sure I eat on time, get enough rest, and pray that I remain well (still no guarantees there).

Or I can go to a friends place, out dancing or to play pool, and almost certainly be bedridden with terrible muscle pains and excruciating fatigue for the following week or so.

It's not much of a choice, but still...

I was feeling so much better when I got back from India that my husband and I planned a 5-day vacation in Los cabos, Mexico. The place was gorgeous, the people were fun, the resort was exquisite, and I was sicker than I've ever been in my life.

I tried so hard to be 'good'. I rested when my husband was out playing beach volleyball. I ate every 2 hrs to keep up my strength. I made sure I got enough sleep. Still, by the time we had to fly back to San Francisco, I was so ill that, for the first time in my life, I had to ask for a wheelchair at the airport.

I always knew that a wheelchair is a good idea for me when there are long distances to walk, but I could never get myself to go in one. It may be physically more comfortable, but emotionally and psychologically I felt it would be too difficult for me. I couldn't bear the idea of having to rely on a wheelchair at 30. It would be like the final step to giving in to CFS.

But last month, I couldn't help it. I couldn't stand, speak or even think. The fatigue was unbearable. So, when my husband asked for a wheelchair, I sat in it.

I think it was almost as difficult for my husband to see me in the wheelchair as it was for me to be in one. I could see how close to tears he was as he pushed my chair.

The airport staff was incredibly nice and helpful. But when one of them wanted to get me a doctor I tried to explain CFS to him. The surprise on his face when I told him that a doctor couldn't help, that no one knew what was happening to me or that I couldn't know when I'd suddenly collapse again, made me realize again what a strange illness we live with.

I have gotten used to CFS. At least I thought I had. Almost everyone who knows me now understands the illness somewhat, but it's when I try to explain the condition to someone new, that the true horror of CFS dawns me.

I'm tired of being tired. Of having swollen eyes and and an exhausted smile in every photo. Of the uncertainty. And most of all, I'm tired of not being able to be independent.

I wonder when it'll all be ok again.