M.O.B. - Jan 31st

Single duck enjoying the first sunshine of spring

Facebook rehab?

My name is Sahiba & I am a Facebookaholic.

There. You now know my shameful secret. But I feel so much better now that it's finally out in the open. Just don't judge me.

Like most addictions, it started innocuously enough. A few minutes here, half an hour there. Just to keep in touch with friends...for old time's sake.

And then I discovered Scrabulous (now Lexulous). And that was the beginning of the end. When Scrabulous was shut down by Hasbro for copyright infringement, I was heartbroken. And I'm not to proud to admit it - I cried.

But all was not lost. From the ashes of Scrabulous there emerged, like some fabulous Phoenix, Wordscraper. And then came Lexulous. In the meanwhile I discovered other word games like Text Twirl & Word Challenge; brain games such as Sudoku and Paradigm; and strategy games including Conquest (online version of classic board game Risk). All this and more - and all on Facebook.

I was hooked.

I couldn't watch TV, talk on the phone or have a normal conversation anymore. My fingers were constantly typing away, my mind thinking of the next word/move/strategy. My eyes got that haunted look. Everybody started to notice.

My husband begged me to step away from the computer. But I didn't want to. After all, I could stop anytime I wanted to, right? I just didn't want to yet. Yeah, right!

But now I admit it. I can't stop. I need help!

In a way, though, I understand what led me to this addiction. With Chronic Fatigue Syndrome, there's very little one can do. I'm no longer studying. I can't work. I don't want to watch Soaps & Sitcoms all day. Sometimes I wonder if my brain will simply shrivel away and die due to neglect.

When I started playing Scrabble etc online, it felt like a lifeline.

Science suggests that simple brain excercises and word games can actually sharpen the mind and improve memory. This is what I focussed on.

However, what I failed to admit was that spending so much time on the computer was really wearing me out. All of us who have had any experience with CFS know that overdoing anything (or even doing what is a "normal" amount for most people) is likely to exhaust us.

So while I was probably working out my mind, I was making myself sicker and sicker.

And that is why I need to go to Facebook rehab. And this is why I am trying to find things other that FB that I can do even when I'm not well - like blogging.

The only problem is, the way I'm going, I may soon end up looking for blog rehab!

M.O.B. - Jan 30th

These flowers are by the door of my building - I never noticed them before today.

It's amazing how little I really "saw" until I made it a point to start looking for my daily MOB (Moment of Beauty)

Just yesterday I was worrying about how I would find an MOB everyday. Today, I'm finding it difficult to just choose one from all the beautiful things I see around me.

Sorry abt the poor pics - I've never really been into photography. But for the first time I find myself wishing I had a really good camera and some basic photographic skills, simply so I could share all the beautiful moments with you.

M.O.B. - Jan 29th

Today's Moment of Beauty:

Last night, when I took Lola out for a walk, I came across this perfect yellow floor lying on the gray concrete:

Daily Moment of Beauty

I came across a lovely blog today: Five Pieces Of Happiness

This reminded me of when I first went to England to study. I was quite lonely - I had left all my friends & classmates back in India. Everything was new for me - the place, the people, the accent, the weather...oh specially the weather!

I had come from a place where it's sunny 350 days in the year...to the grayest place you could imagine. The sky was gray, the buildings were gray, the clothes were gray and, to top it all, the Prime Minister in those days was John Major - the ultimate 'gray man'!

Well, I joined school, I started making new friends, settling in, but something was still missing. That's when I came up with my brilliant idea - every day, I would look for something in nature that was beautiful. It could be a flower, the color of the sky, the layers of an onion, anything. but I would take a moment out of my life to appreciate it's beauty. At first this was a bit of a joke with my new friends, but soon they started looking for things to show me. And it became a daily bonding moment.

I don't know when or why I stopped doing this. But after reading Five Pieces Of Happiness, I have decided to get back to looking for my daily moment of beauty. And I will include this in my daily blog posts from now on. I'd love for all of you to add your own daily "moment of beauty" in the comments - even if it is just the perfect layers of a sliced onion :)

Lola is SAD

Lola has been depressed.

She hasn't had her usual doggie smile, she's been responding rather half-heartedly to our efforts to play with her, she hasn't even been interested in her tug-of-war rope!

We've been terribly worried. Going over our actions over the past few days. Wondering if we could have inadvertently offended her in some way. But...nothing! We just couldn't figure it out.

But today, like sunshine after a gloomy spell, we saw the goofy grin on Lola's face again. After much celebratory back-slapping, we realized...it wasn't just Lola's brilliant smile. There was, in fact, sunshine outside after few rather dull days. And there was Lola, lying blissfully in the warm sun.

And it finally struck us:

Lola had been SAD.

No, not sad, but SAD. Seasonal Affective Disorder (SAD), also known as the Winter Blues, is a type of depression that is probably caused by our body's reaction to lack of sunlight.

This got me thinking about CFS and it's relationship with sunshine. Many studies suggest that natural vitamin D (through sunshine) could improve some CFS symptoms. Spending some time in natural air and sunlight is especially thought to improve the mood (hence Lola's smile).

I don't mean to suggest that we should ignore all warnings about melanoma cancers etc being caused by excessive exposure to sunlight, but I do feel that even sitting indoors and looking out at a beautiful sunny day does a lot to raise my spirits.

So maybe we should all take a page from Lola's book and just enjoy nature the way it was meant to be enjoyed.

Holtorf Medical Center

Today I went for my blood test. I had 9 vial of blood taken. I'm kinda chuffed abt that. Last month, there were 13 vials taken. Maybe that means they're honing in on something?

I've tried various kinds of medicines over the years - anti-depressants, anti-migraine pills, anti-epilepsy pills. I've tried allopathy, homeopathy, ayurveda, acupuncture, herbal supplements, vitamins, minerals you name it. And I know that this is the case with almost all CFS patients.

But last month I tried something new. I went to the Holtorf Medical Group, which specialises in fatigue syndromes. The founder Dr. Kent Holtorf suffered from CFS himself. He has now opened a center for "natural, prescription Bioidentical Hormone Replacement, Complex Endocrine Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Infectious Diseases, Fatigue Syndromes and Neurological Illnesses".

It's just been over a month since I started treatment at the Holtorf center and over the years I have learnt not to get too excited about a possible treatment for my CFS, but I have to admit, I am "cautiously optimistic" about this.



Some of the reasons for my optimism are as follows:

I have been tested for hypo-thyroidism time and time again, but I was only tested for T4, and never for reverse T3. Holtorf prescribed a number of tests for me, which, in 7 years, had not been tested by any of the doctors (endocronologists, neurologists, GPs, gastroentologists) that I had visited. And some of these tests, including the reverse T3, are positive.

I know it sounds kind of whacky, but any CFS patient will understand why I whooped for joy on learning that some of the test results were positive. This was the first time I had physical proof that something was actually wrong with me! It wasn't "all in my mind"!

I don't think that the mild hypothyroidism or the other deficiencies they found are responsible for my CFS in it's entirety. However, I do believe that curing these will help my overall health and energy levels.

Till now, I couldn'y fight my illness because I didn't know what to fight. All the causes seemed invisible. But now that I have somthing to focus on, well, just let me at it!

P.S - In case youre wondering, I got all the tests and medicines given to me by Holtorf, double-checked by my GP as well as another doctor. Both doctors agreed that the diagnosis and treatment seemed correct & logical.

Ms.F.August 11, 2011 3:00 AM

Update - sorry for the long delay in writing this update, but you know how it is when you have CFS - nothing is ever done on time :)

So, to answer some questions below:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone below put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. What has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt Holtorf, you can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html

All the best!

Cleanliness is next to Godliness?

I am the sort of person who is pretty obsessive-compulsive about cleaning. Which is why it drives me craaaaaaaaazy when my house looks like this:

There's laundry baskets to be sorted, clothes to be folded, wires to be untangled, beds to be made, doggie hair to be brushed away, and carpets to be vacuumed.

My husband is at work & my CFS is too bad today for me to even get off the couch.

To make matters worse, I'm getting really really stressed coz the cleaning lady is coming tmrw, and I have to tidy the house before her visit.

Yes, I do know how that sounds. All I can say is - that's the kinda person I am, and you're just gonna havta get used to it!

In fact, the only reason I am willing to share the messy home photo with you is that I don't know you, so I won't know if and when you judge me.

But I do meet the cleaning lady every week, so I can't possibly let her see the mess. Whatever will she think, after all?! Ergo, I have to clean the house before tmrw.

I do realize I have probably lost you by now, but if you think long and hard abt it, you will realize that there is some sort of convoluted logic somewhere in there.

Anyway, to keep me from going completely bonkers, my hubby & I have come up with a system. The days I am not well, he helps by cleaning at least one room so that I have my little haven where I can sit all day and pretend that all's right with the world.

So, here I am, sitting in a near spotless living room, looking out at the most gorgeous view through the picture window, writing my blog.

I'm thinking - would I really be willing to trade the muddy pawprints, the strewn doggie toys and half eaten bones for a spotless home, but a home with no Lola?

And I'm thinking, maybe some mess isn't entirely a bad thing. After all, to paraphrase Laurence J. Peter, "If a cluttered home is the sign of a cluttered mind, what is the significance of a clean home?"

UPDATE - the cleaning lady just cancelled for tmrw. Yaaaay! a reprieve!

Invisible illnesses & the spoon theory

It's often difficult to explain what life is like with limited energy. that's why I enjoyed reading Christine Miserandino's Spoon Theory so much.

Check it out at: butyoudontlooksick.com

I've been having a rough couple of days with the fatigue so don't have the energy to write more now. Hopefully will be back to my fab self soon :)

I choose Hope!

"Once you choose hope, anything's possible" - Christopher Reeves

I have decided to choose hope!

I know it's a bit late to make a New Year's resolution, but better late, than never, right?

It's easy to get into a downward spiral when you're sick. Especially when it's a chronic illness. In the case of CFS, you don't know why you're ill, you don't know if you'll ever get better, you don't know what's happening inside your body or how you'll feel tomorrow. In fact, the only thing that we can safely say we know abt CFS is that we don't know much!

In such circumstances, no one can really blame you if you feel sorry for yourself, or complain about your lot in life. Sure, no one can blame you, but is that rly who you want to become - "the girl/woman/guy who's sick, and makes sure everyone knows it"?

It's not who I want to be. I want to enjoy what I still can, instead of thinking about all that I can't do. I want to be thankful for everything I have (an adoring husband, a loving family, supportive friends and, of course, my doggie Lola), not cry about what I have lost.

I have always lived my life to the fullest. I have always been (in my opinion at least) fun, funny and fabulous. And fatigue is not going to take that away from me!

So, everybody, together now, lets say it. Loud n clear: "We may be fatigued, but we'll be fabulous forever!"

The glass is half full

I found the coolest article today:

How I embrace optimism...and how you can, too
by Jenni Prokopy, the Editrix

Optimism is not the easiest quality to come by. For us ChronicBabes [babes who just happen to have a chronic illness], it can be hard to embrace fully. But there's a positive energy in the air right now, and I think the time is ripe to capitalize on it and remind ourselves that we can accomplish SO MUCH with just the right attitude.

In two days, the U.S. will have a new president, and with him will come a wave of change. Even if you didn't vote for Barack Obama, I hope you're excited for the new opportunities he represents for ALL of us. The commitment he has made to improving our nation's health care system is strong, and all of us here at ChronicBabes are excited about the possibility that one day soon, everyone will get the care they deserve.

Our new leader represents optimism in action, a concept I've been thinking about a lot lately. For those of us who live with chronic illness, optimism is a precious commodity—something we cultivate and cherish. Obama is a perfect example of what it means to not only be optimistic, but to take that positive energy and drive it forward to create a positive result...and to inspire others to do the same.

Continue...

Lola

I hear a heartfelt sigh, which I choose to ignore. A wet tongue tries to work it's way inside my socks. When that doesn't work, there's a gentle nudge, followed by some not so gentle ones. And finally my laptop is pushed away by a determined nose, and replaced by a rather accusing doggie face.

Lola wants to play! And, like it or not, Lola's gonna play - with me!

But Lola knows that "Mommy's not feeling well today". So, though we do play a little tug-of-war, she lets me win. After which she brings a brightly colored stuffed toy and tries to snuggle up in my lap.

How would I ever cope with the CFS without my little Lab-Pit mix?

Oh, don't get me wrong, life with Lola hasn't always been a cakewalk. Far from it! We've had more than our fair share of problems. When we adopted a sweet looking Lab-mix from the shelter, we had no idea about the the determined, independent Pit-Bull genes concealed behind that innocent face.

There followed tears and accusations, tantrums and multiple ultimatums to Lola that she's going back to the shelter. But, somehow, we got past the rebellious teenager stage and emerged on the other side with a (near) perfect dog.

Life with CFS can be pretty lonely. I don't have the energy to take up a 'proper' job; friends/family work during the day; going out alone is difficult - I never know when I'll be stuck without the energy to walk or drive back; even grocery shopping can be a stretch and doing house work can be close to impossible.

But I have Lola. And she helps me smile, even on the worst days. :)

Uh oh, gotta go now! Here comes the pushy wet nose. Lola wants her dinner. And we all know, what Lola want, Lola gets!

This is what I do.: This year, 2009 and ME

This is what I do.: This year, 2009 and ME

Viva La America

Today, Barack Obama become the 44th President of the United States of America. The Leader of the Free World (what's that all about anyway? Isn't any country other than America free? Or does the POTUS reign over all free countries in the world?).

As a non-American, I may scoff at times at the US. About how 'simple' the average American is, or how the lead story of local news features a cat stuck in a tree, at Sarah Palin's foreign policy comments, or, especially, at Bush and his many, many faux-pas. But I have to admit, days like today make me understand why Americans believe so passionately in their country.

This is a country where a mere 100 years ago, US senator Benjamin Tillman could declare on the senate floor,"We of the South have never recognized the right of the negro to govern white men, and we never will. We have never believed him to be the equal of the white man". And yet, today, President Obama entered office with the highest approval rating of any US President.

But what makes this country truly great is that Obama was not elected because of a misplaced sense of guilt. He didn't win because he was black, or despite being black. He won because he was the best person to lead the country. He won without needing to play the race card.

(Of course, before I start getting too dreamy eyed abt America, I should also remeber that this is the same country that elected President Bush not just once, but twice! - can you rly blame the rest of the world for doubting America's greatness at that point?)

But, coming back to Obama - this gives me hope. Hope that great things can happen. Will happen.

Viva La America! Long live America!

Ah, CFS, CFS, wherefor art thy CFS? for a rose by any other name...

I'm dog tired today. Big shocker. I've been tired for seven years. Doesn't do much for my social or professional life, but sure does give me a lot of time to think. Was complaining to random people about my lack of a life when some do-gooder piped up - "hey, why don't you start a blog?". Now, this may have been a last ditch attempt to get me to stop talking but, you know what, I prefer to believe that he recognized the spark of brilliance in my random musings and wanted me to share my unique perspective with the world.

And that's how you lucky (or not) people got to be here, reading my blog!

So, why am I tired, you wonder. Fully explaining this would take more energy than I have, so I'll tell you in 3 simple words: Chronic Fatigue Syndrome (CFS).

I often wish that this illness was called something else. Something that sounded more, well, more serious I guess. Something that conveyed what the illness was really all about. That let you know about the dizziness, the pains, the constantly aching muscles, the days when I'm too tired to lift a spoon or walk to the bathroom or even to think. You know, one of those sixteen syllable, impossible to to pronounce, incredibly medical sounding names ending with "itis" or "osis" or "phage". A name that caused an awed hush to go around the room when I said it (insert dreamy sigh here). But back to reality - Chronic Fatigue Syndrome it is. I guess I just gotta work with what I got.

But all is not lost. There are people out there who are trying to set the record straight about CFS. In fact, I'll have you know that William Reeves, hot-shot doctor with the Chronic Diseases Center actually said, and I kid you not, “I think there is no question that ...[people with CFS] are as impaired as a whole as people with MS [Multiple Sclerosis], as people with AIDS, as people undergoing chemotherapy for cancer”.

So, don't go knocking my disease just cause it doesn't have a cool name.