Thursday, May 24, 2012

Feeling blue...

Was getting a bit bored the other day...what could I do to bring some excitement into my otherwise mundane & humdrum life? Like all brilliant solutions, the one that struck me, too, seemed glaringly obvious in retrospect. Color my hair turquoise? Why, what an absolutely marvelous idea!!

So, without further delay, presenting.....ME!

 




Tuesday, May 1, 2012

Cultivating happiness

http://greatergood.berkeley.edu/article/item/how_to_trick_your_brain_for_happiness



Great article...Most psychiatric therapy today is based around Cognitive Behavioral Therapy (CBT), which is pretty much training the mind to replace the negative thoughts with positive thoughts, thereby cultivating a happy state of mind. 


A lot of Buddhist philosophy also deals with this - 'Buddha's Brain: The Practical Neuroscience of Happiness, Love, and Wisdom' by Rick Hanson is a great resource, as is 'The art of Happiness' by the Dalai Lama & Howard C. Cutler (a leading psychiatrist).

I am currently off all anti-depressants and am getting better only with CBT therapy with Dr. Matt May. I will be writing more about this later.

If you or anyone you know suffer from depression, please do take a look at this article.

Monday, April 9, 2012

My name is Sahiba, and I suffer from depression

My name is Sahiba, and I suffer from severe suicidal depression and anxiety.

It’s taken me 15 years to say those words out loud, in front of everyone. 

I know that depression is an illness, no more my fault than if I have the flu. And yet, during an intense episode, the agonizing guilt and shame associated with the disease is crippling. 

Maybe it is this shame that makes it so difficult to reach out for help. Or accept help even when freely offered by those who love me. 

Now that I’ve finally started talking about it, I find that the floodgates are opening. I have so much to say about depression - how it played with my fibromyalgia & pain, how it eroded my confidence & self-esteem, and how it is finally leading to self-acceptance and self-discovery. I think I’m going to need a few posts to deal with it all.

The worst thing about depression is how it fools you into believing that you are the illness. It’s like someone has taken over your mind, your body, your very thoughts, and you have no control left over any of these. You are a prisoner within yourself.

Over the years, despite the CFS & fibromyalgia, I have prided myself on staying positive and fighting for the best possible life I could have. But when the depression attacks, it strikes at my very motivation for wanting to recover. “Why do I deserve to draw another breath?” How do you answer that question?

While I have had suicidal episodes over the years, the one that I’m now getting over was possibly one of the worst. Anyone who knows clinical depression will understand that it can take many forms. For me, it’s always been predominantly guilt. But for the first time in my life, anger took over. Suddenly all the internal self-blame became externalized and I couldn’t understand why I abruptly stopped connecting with people. 

I had always been such a patient, caring person. Hadn’t I? Or had I always been this selfish, anxious, bitter person I now felt like? Some days the anxiety was so much that I would spend hours lying trembling and crying on the floor with a knife in my hand, trying desperately to find a reason not to cut my wrist.

The only thing that got me through this time was my husband. In retrospect, this was not fair to him. If I had had the courage to share my illness with more people, the burden on him would have been reduced. I think we both hit rock bottom those days, but we made it through somehow...knock on wood :)

I also wanted to say that though my friends may not have been aware of what was happening with me, it soon became very clear to me who my real friends were. There were some who didn’t have any trouble forgetting about the years of interaction they had had with me. But there were others who may not have understood what was happening with me, but were willing to give me the benefit of the doubt and their support.  And that was all I really needed. Thank you.

Sunday, June 26, 2011

M.O.B - 27th June


“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.


~ Upanishads



Thursday, June 23, 2011

The death of 'I'

I have been trying so hard - and for so long - to stay strong. But I can't do it any more.

3 days ago I finally gave up my fight against allopathic medication and started Medrol, a Group A corticosteroid for the inflammation of the muscles and nerves. I no longer know why I put myself through the agony of the Lyrica & Cymbalta withdrawal symptoms, if I simply had to start on such strong medication again.

I feel defeated.

In fact, it's like there is no longer an 'I' left to either be strong or feel defeated. There is just pain and fatigue.

And I'll do just about anything to stop it.


At the very least I tried to stick to the hope that with the steroids, the pain would finally get a little bit better; that after 9 long years, my body would get a break from the agonizing misery....but it hasn't. And that may be the most disappointing thing of all.

The constant dizziness - I don't know whether it's the CFS/FM or the medication that's responsible - has been getting worse to the point where even lying in bed I feel the need to constantly hold onto something so I don't fall.

 I've never wanted to be that person who's always miserable and complaining. I always told myself that even if I can't help being miserable, I can at least not complain.

But since that 'I' no longer exists, I guess I can finally be weak and break down and cry...



Wednesday, June 1, 2011

Happy to be me

I'm finally off Cymbalta & Wellbutrin!

Can't believe I actually did it. The past couple of months have been amongst the worst ever. There were days - weeks even - when I felt like instead of bones and muscles and skin, all I was was a mass of unbelievable pain and a deep, never-ending, all-pervading fatigue. I didn't think I could go through the withdrawal.

But I did!

And I'm so proud of myself! :)

Now just 120mg Lyrica to go....

Sunday, April 17, 2011

Tuesday, March 29, 2011

Newsletter by Jenni (Chronic Babes)


Dear fellow ChronicBabes,
(view in your web browser)

Jenni
Today I want to share with you a short, simple message: Be brave in the face of chronic illness. It’s easy to be overwhelmed by fear or sadness. It’s easy to get confused, or to feel swamped with questions about the unknown—or to be angry about having to live with something you didn’t plan for, or don’t want to face. These feelings can weigh you down, and can fester and turn into fear.
Fear can hold you back. Fear can stop you in your tracks. Fear can keep you from being the truly awesome Babe you are meant to be.
I know this because I’ve let fear stop me before. I can tell you this because I’ve been there myself—I’ve experienced times in my life when fear overwhelmed me and stopped me cold.
But every day, I recommit myself to stand up against my fears and to live an incredible life in spite of chronic illness. And today is really one of those days—a day when I am truly standing tall and meeting my fear face-to-face, looking it square in the eye, saying hello to it, and then walking right on by. Fear is not going to stop me from being an awesome ChronicBabe, no matter how sick I am. I am going to rock this life!
Maybe this fear-fighting idea is old news to you; in that case, let this simply be a gentle reminder from a good friend. On the other hand, maybe this is a fresh idea for you; in that case, I hope you’ll consider printing this email and carrying it in your pocket for a few days, re-reading it each time you feel fear tug at your sleeve. (This is a favorite trick of mine.)
Feel fear? Face it down. Don’t let it stop you. I believe in you! And if you want to talk about your favorite fear-busting techniques, come on over to the Forum and we can have a chat about it.  I’ve already started a list there of some of my favorite fear-fighting techniques and I think our Forum members will be posting lots more.
Thanks for sharing this moment with me, friends. Be AWAP… (As. Well. As. Possible.)
XO,


Jenni
Editrix Jenni

Saturday, March 19, 2011

The long and the short of it...

Since I've been a child, I've been fascinated by long hair....started growing my hair when I was 7 yrs old and never looked back. My hair was as much a part of me as an arm or a leg. that's why it was such a shock to everyone (including me) when I decided to cut it. 

A part of me was quite scared about letting go of my 'identity', my 'uniqueness'. What if I didn't look nice any more, what if people didn't recognize me, what if I rly regretted it?

Well, I made the leap around 6 months back and have never been happier. It's made my life so much easier - takes no time to wash or comb, am no longer constantly running out of conditioner, the chronic pain in my neck (due to the weight of the hair) has disappeared, and I love the way I look.

As one friend put it - "earlier, we only saw the hair, now we rly see you"....
Rapunzel, Rapunzel

The 1st cut

Getting ready for the 2nd cut



Short angled bob


The 3nd cut

The final cut





Have a hair cut apptment on the 25th...let's see what I go in for this time....

Friday, March 18, 2011

Of start-ups and hackers

So here's the deal - if you live in the Silicon valley, the start-up bug WILL catch you. It doesn't matter how much you hide, run, scream or fight it. It doesn't matter how risk-averse or certainty-oriented you think you are. It will find a way to sneak past your defenses, weasel it's way past your doubts and sink it's teeth into you good n proper! And that's what happened to me.


Hubby K has always been an entrepreneur at heart. Since I've known him, all he's wanted is to start his own company. All these years he's had to keep this ambition on a back-burner as he was too busy taking care of me. But, we've decided that the time has finally come. He's quitting his job, we've moved to San Francisco proper and we're starting our own start-up. This is it, folks!


In an effort to educate myself about the strange but exciting world of start-ups I decided to start reading up about it. Did you know that not only do techie-geeks live in their own peculiar universe of networks and virtual reality, but they have their own language too - hackers, angels, runways, cookies....and none of them mean what they would in simple English.


To quote security guru Bruce Schneier,  "A hacker is someone who thinks outside the box. It's someone who discards conventional wisdom, and does something else instead. It's someone who looks at the edge and wonders what's beyond...A hacker is someone who experiments with the limitations of systems for intellectual curiosity."


In short, being a hacker is a good thing.


Oooookkkkaaaayyyyyy.  

Paul Graham of YCombinator, one of the biggest angel investors of start-ups, explains how they choose who to fund. They fund hackers. Here are their criteria: determination, flexibility, imagination, naughtiness and friendship.


And here's why I think hubby is born to be a hacker: these are exactly the qualities needed to successfully deal with living as a full-time care-taker of a patient for 8 long years. Never giving up - no matter what the odds, changing/improvising plans routinely, dreaming up new ways to make things possible... 


Currently we're in the process of applying for funding for our new start-up. I have a hundred examples of why K would be the perfect entrepreneur / hacker to back....just hope the investors see it as clearly as I do.


Image Credit: Labnol

M.O.B. - 18th March

Just realized that we haven't had our 'Moment of Beauty' post in aaaaaaaaaaaaaaaaaaages, so here's a quote that made me feel positive....

"Change the way you look at things, and the things you look at will change"
- Dr. Wayne Dyer


Thursday, March 17, 2011

Opulent Temple white party

This weekend was a bit of a bummer.

We were supposed to go for this Sacred Dance 'white party' - don't worry if you don't have the foggiest what that means, I don't either - but it sounded particularly conducive to a night of divine dancing and drunken debauchery. But, alas, this was not meant to be...

I was having a pretty bad day, but since when have I decided to listen to my body's signals? Managed to get ready, sit in the car, almost reach the venue, then realized that I had forgotten my ID at home. Turned back, reached the house, picked up the ID...and just didn't feel well enough to go out again!

Dark cloud: was quite disappointed, esp since we had bought tkts in advance and had been looking fwd to an evening out.

Silver lining: got to get all dressed up in white, with glittering silvery make-up, take pics and feel pretty. And don't ever underestimate the value of feeling pretty!!


Wednesday, March 2, 2011

Ups n downs


Life is full of ups and downs, they say.

2010 was mostly a down for me - extreme exhaustion, excruciating pain, mind fog, hospitalization, you name it. But that doesn't mean there were no ups. I think I had to reach absolute rock bottom to get out of the 'comfortable' place I had settled into. I had gotten so used to feeling tired and in pain all the time, that it had become 'normal'. But maybe getting worse was the push I needed.

I had been trying to reduce my meds for a while. By end 2009 I had managed to cut out many of the most hated meds - chief amongst them Cymbalta. Cymbalta is approved for dual use against depression and fibromyalgia. But what no one really emphasizes are the side effects. The frequency and severity of side effects listed by the company come nowhere near the real thing. The 'brain fog' caused by Cymbalta got so bad that on some days 2+2 was a confusing equation for me!
Towards end March 2010, my pain had shot up to an unmanageable degree. I was taking 6 to 8 Vicodins daily along with medical marijuana in edible form (extremely potent) as well as some other pain killers. 

And still the pain wouldn't go. 

I pretty much lived like a zombie for those months - either drugged out of my mind or in unbearable pain. We hadn't gone out in months and K was mostly focusing on managing my pain, besides his job and the home. 

Finally came a day when I felt I just couldn't go on like this any more. I no longer felt safe with myself. At this point, K and I went to the emergency room and decided to check me in. 

The doctors at Stanford Hospital, nice as they were, were pretty clueless. They started me on Lyrica as it's the only other drug approved for Fibromyalgia. It wasn't particularly effective, so they kept upping the dosage till we reached 400mg/day (100mg more than FDA approved 'safe' dosage). Eventually, they added 60 mg of cymbalta and sent me home with more drugs and little relief.

One of the particularly nasty side effects of Lyrica was that entire episode of events would vanish from my memory. On one of my better days, we went to the mall for some much needed retail therapy and I bought a couple of nice skirts. The next day I had absolutely no recollection of the trip or of my purchases. 

Days passed in a daze. And yet, there was no relief from pain or any signs of recovery. 

The doctors had no answers as to when/how to get off these drugs, but would usually give a referral to a different clinic. We did make few trips to the Stanford pain clinic but soon realized it was just more of the same. They referred us to 3 other clinics and usually the referrals never went through or required multiple calls, and we had to wait for weeks while the hospital figured out the insurance details.

Initially I was mad at the doctors for not doing something different, for not giving me a long term solution, for not trying harder to help me. The side effects of the drugs (confusion, brain fog, memory loss, dizziness etc) were probably worse than the illness itself. My mother had to fly down from India to help care for me since there was no way hubby K could manage everything by himself - either physically or emotionally.

Around mid-2010 I finally decided to try something different. 

The roller coaster of pain had been tough emotionally, so I went to the best therapist/psychiatrist I could find - Dr. Matt May. He wasn't covered by our insurance and I was worried about the cost, but I don't think we could have made a better investment. Years of brain fog had pretty much warped my self image. Dr. May helped me appreciate myself again. And with his help, down we went on the meds again.

At the same time, K had read an article about how a chiropractor had cured someone of severe chronic pain. We decided to give chiropractic a try. Dr. Matt Coleman was like an angel from the heavens above :) Within a month my pain was down from the acute sharp shooting pain to a much lower-grade dull ache. I was able to cut vicodin to a large degree but not completely. More importantly, he taught me the importance of nutrition. We all try to eat right - at least we like to think we do - but it's shocking how little we actually know about what goes into our mouths. Best advice I can give you - read Nourishing Traditions by Sally Fallon. I can honestly say this book changed my life. I gave up sugar, tea, coffee, started checking the ingredients of everything that went into my tummy, eating only organic etc etc. He helped my figure out that I was severely allergic to corn and tomatoes.

Within a few months I started feeling stronger from inside. It was like my organs were recovering from all the stress they had been under with the strong medication and wrong foods. I lost weight (over 40 lbs) looked better and felt better than ever. K also lost about the same amount of weight just eating right with me. 

I'm not trying to suggest that I was miraculously cured, but it was definitely a start. By September I was feeling strong enough to travel and decided to go to India to try acupuncture again. Unfortunately acupuncture wasn't able to help - despite daily sessions for about 3 months. But then I tried something new - the Kottakal Arya Vaidya Sala - an ayurvedic hospital in India. It was two weeks of in-patient treatment and daily massages with medicated oils. I came back feeling and looking like a different person. 

I'm now back in San Francisco along with my ayurvedic meds from the Vaidya Sala, and am on the roller coaster of getting off my allopathic meds again. I'm doing pretty well - Cymbalta is down from 60mg to 10mg, Lyrica from 400mg to 150mg and Wellbutrin from 300mg to 75mg. But the withdrawal is pretty tough. I'm hoping to be totally allopathic medicine free by August 2011. 

Keep your fingers crossed for me! 

Wednesday, March 10, 2010

A weird and wonderful day

Today is the strangest day ever!

It's hubby's (K) b'day today.

No, that's not what's strange....be patient folks...

Anyway, as I said, it is K's b'day. So, of course, I was planning the usual cake, champagne etc. But yesterday K asked me a strange question. "Do you want to give me a birthday present that would rly mean the most to me?"

Of course, I said.

"Then, just for one day, see yourself with my eyes. Love yourself the way I love you. Treat yourself the way you know I would like you to. If you want to do something, think about whether you're rly doing it for me or for yourself. Pls don't clean the house. Think of how that would drain your energy, so you won't even be able to talk to me in the evening. You don't need to dress up and get tired. I'd rather see you laughing in pajamas. My ideal birthday present would be to see you lively and energetic, even if the house is dirty and there's no cake and you couldn't plan a party.  " (or something like that).

Heavy, eh? Yeah, I mean who would be ok with no cake on their b'day??!!!

Ok srsly, I decided that if that's what he wanted, then that's what he'd get. After all he was the b'day boy (errr....man?)

And today has been the wierdest most wonderful day ever! I feel like I'm on vacation. I want to wash my hair so it looks nice for tonight, but I know it'll tire me. Normally I would have managed to convince myself that washing my hair wasn't optional, it was obligatory. And that somehow, I could summon up enough energy to do it.

But looking at it with K's eyes? Now that was a whole different ball game. He would say - Conserve your energy. Save it for when we're together. I don't care if your hair isn't washed, you're always beautiful to me (ok, so I put in the last part myself, but I know he would have said it!)

And so the decision has been made!

No hair washing today!
(for those of you who are wondering what the big deal abt washing hair, see  photo!)

I used this technique on everything today. And it was fantastic. So I began to wonder why it made the difference it did, and I came up with the following:

1. I usually decide that everyone's wants/desires are the same as mine. I often try to tidy the house before K returns from office. But I realized that I do that because I would like to come back to a clean home. If he had to choose, he would choose an energetic wife over a clean house any day! So I'm rly doing sit for myself - I can't pretend it's for him.

2. I am not realistic about my energy levels. I can easily convince myself that I can do anything with "just a bit more effort", until I reach the point where I'm bedridden. Looking at it through K's eyes, made me think - If he were here would he like me to use my limited energy on this task? And, I realize that it's ok to stop because I'm tired. It's ok to listen to my body.

3. Obviously that demands the question - why can I stop when K thinks I should, but not do it for myself? Guilt. Yup, that's it the culprit - guilt! To myself, I'm 'lazy' if I don't do something that needs to be done. To K, I'm genuinely tired - something that I'm not willing to accept.

It's odd that I've had CFS/fibro for almost 8 years, but I still haven't learned energy management. (Hriday, I know that this is just asking for it, so go ahead...). But better late than never I always say!

Stay tuned for whether I am able to incorporate these changes into my daily habits....

Monday, February 8, 2010

Are you listening God? It's me....

I'm soooooooo happy, I can hardly stop smiling.

I had such a wonderful time today. Didn't do much - just went to a friends place, chatted, played Pictionary. In other words, had a 'normal' evening.

Guess someone up there is reading my blog too :-D

Sunday, February 7, 2010

Breathe again...


Here's a pretty good article by Dr. Bruce Cambell on his life with CFS/fibro...

ME/CFS and Fibromyalgia: Rebuilding Life in the Face of Loss

Saturday, February 6, 2010

Just another day...

The past few months have been exceptionally bad in terms of pain. I recently got off a medicine that was controlling pain pretty well, but had other unwanted effects. Since doing anything - even sitting in the car to go out - exacerbates the pains, I've been forced to become a bit more of a homebody that I would ideally have liked to be.
This morning, as I was playing Scrabble, hubby walked by chatting with a friend on speaker-phone. She was telling him her plans for the day. She had lunch with a friend, after which she'd drop her dog off at our place so he could have a play date with Lola, sit with us for a bit, then go to a comedy club, followed by a bar/pub/club. The next morning she had to be up early for a Superbowl party at her place. She made it sound so easy. So normal. Then I realized - it is normal. For most people.



I'm waiting for the day when it'll be normal for me too.



Monday, January 18, 2010

For my friends...

I've been cancelling a lot on my friends lately. And I know that while they try to understand, sometimes it can be difficult.

So here's a list of what friends/family of CFS/FM patients should know:

1. I will cancel. Despite all my best intentions, there will always be times when I will cancel at the last minute. I'm not trying to be inconsiderate, I usually cancel only after I have tried all alternatives like coffee, rest and energy drinks and they haven't helped.

2. I will be late. I usually need to start getting ready at least 4 hrs before I go out. I need to rest after taking a shower, again after combing my hair, putting on make-up, or getting dressed. I hate being late, but it's often impossible for me to correctly gauge how much time / rest I'll need.

3. I will not understand. I get terrible brain fog. Sometimes I just won't understand what you're saying, however simple. I simply have to wait for my brain to clear - I'm not being deliberately obtuse or difficult.

4. I will forget. You may tell me something 5 times and I may still forget that you told me. With the brain fog, it can be very difficult to simply understand what's going on around me, much less remember stuff.

5. I may not be able to help. I love to help my friends in any way I can, but sometimes this is just not possible. Again, not being selfish or thoughtless, just can't do it.

6. You may not hear from me. Sometimes weeks, even months, go by and I don't call/email friends. I do think of you, it's just that talking on the phone or even spending time on the computer can be exhausting. Pls do call / mail me sometimes, even if it feels like you're always taking the initiative. It rly means a lot to me.

7. I appreciate your support. Even simple things like knowing that you will understand if I cancel go a long way in helping me. Sometimes I may need your help, other times just knowing that I have friends who truly care abt me can make me feel better.

I know it's not always easy being my friend, but I truly hope that you will still think it's worth it. I hope this helps you understand me a little bit better.

If there's anything else that CFS/fibro patients or friends / family of patients would like to add, your comments would be welcome.

Sunday, January 17, 2010

A beautiful day

I did a load of laundry today! All the way from putting the clothes in the washing machine to folding them neatly after they were dry.

It's ridiculous how much joy it gives me to be able to say this.

The past few months have been a haze of fatigue and pain. I have been doing things - my parents have com to visit, I took a trip to Florida - but there was always the constant underlying pain and discomfort, just beneath the surface, just beyond my reach. I haven't driven a car for over 6 months or been able to do groceries for something like a year.

But today, my mind is clear and body is (almost) pain-free. I feel like a captive animal that has been released back into the forests.

And I'm going to celebrate!

I can't believe how many things there are that I can do. I can go to the mall, I can go buy food for Lola, I can see a movie without getting exhausted, I can visit a friend, go for a walk....I can't choose!

But I think the thing that gives me most joy is that I can be self reliant. If I'm thirsty, I can go to the kitchen myself to get a glass of water. If I'm cold I can get myself a blanket. For the past few months, my husband has been giving me breakfast in bed. After that he makes my lunch and keeps it in the microwave, walks & feeds Lola, and then goes to work. If I am able to stand up by afternoon, I heat my lunch, eat and go back to sleep. If I can't, my husband comes home from work to feed me and take Lola out. He then goes back to work. In the evening I usually wake up just before he comes home. He fixes me a snack, feeds Lola takes her for a walk, makes dinner, finishes office work and finally collapses a night.

I know that all this is not my fault, but I still feel terrible. Just the fact that I was able to take on a bit of the load by doing the laundry gave me an incredible amount of happiness.

I'm off now to make myself a cup of coffee, and after that...I'm going to live life.

Tuesday, November 17, 2009

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!