Blogs-and poems they keep us together

When I try to get in touch or chat with Joanne, my fellow fibromite and long-list-of-symptoms buddy, it is not always possible.

Some days, my hands are swollen-which means I cant type much. Some days it is her turn. Some days, it is my crash days, and sometimes, when I am well, she is down. Why dont you just call each other?

Did i mention we dont live in the same countries or time zones? Besides it might freak our family out. We are people who seem to suffer more than out lab tests suggests-may be it is psychological. We both suspect our family members sometimes think that way-secretly, esp when they cant accept or deal with us being sick. So, if we form a band of sick sistas, it probably gonna freak then out!!! Our sick minds will infect each other??

Today I saw "Never Give Up" as her favourite quote! And OMG, that was my super favourite when I was fighting with fate and the school authorities to sit for my exams! Being in an "elite" school meant I was quietly pressurized to give up taking a national exams, as the school could not risk having me fail, and pull down their rankings. I was stubborn and resisted. But that meant I trod down a lonely path. Aged 17. In pain all the time. Living away from home.

I recited this day in day out in my heart-whenever the pain was too much, the pressure too strong, or I was just totally lost in my own tears.

Never give up

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit
Rest if you must, but don't you quit.
Success is failure turned inside out,
The silver tint on the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems afar.
So, stick to the fight when you're hardest hit
It's when things go wrong that you mustn't quit

The poem saw me through. Tough exams. Tough teens.

As I got older, this became my mantra. An atheist like me actually loved this.

Serenity Prayer

God grant me the serenity,
To accept the things I cannot change,
The courage to change the things I can,
And the wisdom to see the difference.

This saw me through operations, physiotherapy.............. and many more (including my decision to get married!!!).

I think poem is gonna see me through life. 10 years later, this is still my favourite........

Joanne, it is going to be a long fight for us both. Choose our fights carefully. Optimise our energy to bring us the greatest possible happiness.

Why I blog? To let others know I am alive.. and to share poems. :)

SIMPLE CURRY RECIPE!!! The cheat's way

This may look long, but it is actually very easy, and fast when you got the hang of it. It is a balanced meal, and a great winter warmer. Just cook one "pot" and it could last you days!

Ingredients:

• 1-2 tbsp vege oil
  
• 50-100gm of yellow Thai curry paste-try to get from Asian grocery stalls (much cheaper!) or sites like this. I use about 3 heaped tablespoons of the paste for 1 pot of curry, about 800 gm of chicken. Put more if you could take the "hot taste". A tub like this will allow you to cook at least 5-6 times
  
• 800gm of chicken (put only about 1/2 (500gm) if you don't like them too soft)
• 4 medium sized onions-cut into 8
  
• 1/2 cup of coconut cream, or 1 cup of semi-skimmed milk or 1/2 cup skimmed milk with 2 tablespoon of natural yogurt
  
• 4 potatoes (add more if you like, but increase the curry paste slightly if you do)-cubed
• 4-5 tomatoes
• Other "soft" vege: eg, okra, aubergine
• (optional)-fish sauce, turmeric powder
  

Cooking methods:
-If you try to get more turmeric into your system, add 1-2 tsp of the powder, and blend into the paste.
1) heat some oil in the pot. Add in the paste when oil is hot. Use lowest heat.
2) fry until fragrant -2-3 minutes
3) Add chicken-"stir fry"1-2 minites
4) Add onion and potatoes- stir to prevent pot burning, until onion slightly softened. Add some coconut cream and water to prevent burning
5) add water until enough to cover all the ingredients
6) Cook with low heat for about 20 minutes, then add "soft" vegetables. Cook for another 10-15 minutes, until tomatoes are soft, and "blended" into curry.
Add some fish sauce to taste.

Tip: If you find it too hot, add 1-2 tablespoon of sugar.

Serve with rice or pasta or bread. Baguette is fantastic with this!

To prevent the curry turning stale, boil it again before you sleep, and boil it again in the morning. Basically, the curry could keep for up to 3 days if you do this in winter. You can add fresh vege, [try those suggested "soft vege" as they are quick to cook] and meat or even frozen fish fillet everyday into the broth!!!

It is great to go with bread in the morning. I eat it again for lunch and dinner. Usually for the last round , I will add some oriental noodles, and have curry noodles. Great winter warmer!!

Try it out! And let me know when you improvise this!

If you find this cheat's curry still too difficult, try this sardine curry recipe. It takes less than 5 minutes!

Weekends are good .........Curry is great!

Weekends are something to look forward to when you are stressed at work. To get an idea of how stressed I am, let me tell you that I cant wait for the end of the week, which is just 3 days away for a part-timer like me. I dread going to work. Dread having to get out when it is so cold, and my ankles so painful, and dread it when I arrive at the office, and have to steel myself to appear alert for the next 8 hours. Scary. Scary enough just coping with energy. Even more scary now that if I arrive late, I know there is a back stabber ready for the kill. I feel like telling this young "kid" to just leave me alone!!! Back stabbing is bad for karma, and stop questioning the "realness" of my pains, just because you never knew pain!!

Out with the accumulated pent up stress (it is just the 1st work day!!!), in with the goodies I cooked. NOthing much actually. Just curry.

The supermarket had a sale of thighs and drumsticks-1/2 price, and I immediately thought- CURRY!!!! The hard part of curry is peeling the potatoes, and cutting them when your hands are inflammed. Cutting up the chicken is a pain too, especially if you are trying to get rid of the skin a fat! Buy chicken breast if you could afford. Saves you the trouble!!

Anyway, the potato peeling was delegated to my hubby. Asked him to peel enough for 2 meals, and got him to cut it to pieces 2cm3 cubes too. 2x2x2cm.

I skined the chicken, and then cut them to large chunks. Basically, I just cut off the meat from the sides of the thigh bones. You could put the thigh bone into the curry with the meat, or save it for leek soup!

This weekend, I cooked my simple chicken and vege curry, the Cheat's way!

"New Concept Teaches Fibromyalgia Sufferers How to Free Themselves From Symptoms and Suffering" ???

Found this in my usual "google news" with fibromyalgia as the keyword.

When you see such a title on Google news, it sounds like really good "news". I almost jumped with joy!! Your heart rate increases would increase, and you would quickly click the link, and curse why your laptop is so slowwww in bringing the page to you...

Here it goes....

"...is introducing its new and innovative program of ridding fibromyalgia symptoms naturally, designed for the fibromyalgia sufferer. Now anyone can be free from the devastating symptoms of fibromyalgia."

Skeptic alert #1
"anyone"??? WOW!!!!

"Now fibromyalgia sufferers can learn how to quickly rid themselves of unnecessary pain and fatigue through xxxx's new program."

Skeptic alert #2
"quickly"??? And I have been suffering "unnecessarily!!"

".......suffered from fibromyalgia symptoms and other autoimmune disease. She went from doctor to doctor, even the Mayo Clinic, for 9 years. She has researched the condition for countless hours, through medical journals, doctors, internet resources, medical libraries and more. Program X is the culmination of these findings. Their comprehensive system has helped countless sufferers of fibromyalgia. Come out and improve life ........"

Skeptic alert #3
"countless sufferers"??


So, a skeptical me went to the website to check out the program, and guess what, this it what it told me: (!!!)

"In case you are skeptical (I respect that), let me tell you what our
Heal Your Body SYSTEM is NOT:

As you can see, I can show you many success stories of people who have beaten Fibromyalgia and it’s devastating symptoms.

But just in case you've been "fooled" or "taken” before with cure alls, Let me tell you what our SYSTEM is NOT:

• It is not---a pill to cure all
• It is not---a quick do nothing on your part cure
• It is not---a ploy to sell you on multiple no good cures
• It is not---some scam preying on your health concerns

In fact, using my system, many have helped themselves beat this terrible condition.

... Best of all, we've proven again and again that ANYONE can start to feel better using the “Heal Your Body” system."

Wow! They read my mind!!!
And because they read my mind and knew I would still be "sceptical",
they told me this (format as in their website):


"

"Incredible SUCCESS - People like

YOU have literally wiped out their

Fibromyalgia Pain

--Completely Eliminated headaches,

backaches, myofascial pain, muscle

aches and fatigue"

Ok... that sounds really good!!
I got to say it sounds good. I must learn this new concept!!!

And so I scrolled down the page.. scrolling and scrolling... and read more about the benefits.
Then I saw a BIG " ORDER NOW"... I got to pay $27 for it.

Gosh. I felt betrayed! She struggled for 9 years, so she must know how much trouble I have. And I got to pay for her advise?? Alright, I know nothing is free. I have no $$ to pay for it now. So do I continue to suffer... and errr "unnecessarily".

Seems like that is the way to go. I will suffer "unnecessarily"- it is all my fault- because of my inability (or unwillingness??) to pay another $27 for advice. For the lack of $27 USD , my pain continues.

Breaking the cycle....it is not insomnia.

I have been trying to SLEEP.

I have the time, I am tired-very tired, and all I want to do is SLEEP. But sleep had been elusive.

At 3 am in the morning, I am still wide awake. I try to do something "useful", like reading or surfing the net, with the hope that i would feel tired enough, and then sleep. Sure enough, but 4 am, I was dead tired, and slept. However, I woke up as early as 9 today, even when I dont have to work, and has nothing urgent or important to do.

When I read Doug Bower's Here I am in the Middle of the Night, Once Again, I wondered how many "normal" readers could see it as something more than "insomnia". Everyone would have some experiences of difficulty sleeping, at least a few times in their life-whether due to excitement of a wedding, or the distraught of losing a loved one, or just a period of time where stress is high. Insomniacs have more than just sleeping problem, and fibromites have more than insomnia. How many could see beyond that?

All I want is to try get a good sleep. Without it, my symptoms just escalates.. and escalates.

Retribution??

I wish. No. I wish not.

The idiot who back- stabbed me, and came out with multiple quotes, took 2 days off work. It was peace for me. Work get done.

Today, he came back. Sigh. Why don't he take more days off??

As he always hinted I was pretending when I had problems, I wondered if he was pretending too. I remember he said a gal he knew was taking 2 days off every 2 months or so, because her colleagues took leaves, and she did not fall sick at all! It is unfair that some people take so many sick leave while others don't. Talk about playing fair. I wonder if he wants to be in my position.

Reason for his sick leave? Fever. Unexplained bruises. Tummy upset. Uncomfortable all over. Tired.

So, what did he have??? My mind had nasty things on it, which made me quickly check my thoughts. Gosh, I think I hate him so much that i actually wished he had one of the nasty stuff, vanish and just leave me alone!!!

I think I am too stressed! I am already sick with the daily struggles, and to have someone like that around, is really toxic!

pressure is on

The pressure is on, and escalating- Both at home and at work.

Since before Christmas, I had bits of swellings from my RA here and there. I canceled meeting friends on the 23rd to rest at home. Cut down my my social stuff, and delayed putting in the form for my volunteer work. I am watching, resting, and hope that it will go away soon.

The mornings have been bad.

BAD. Do you know what it means in a winter morning if your joints swell? Your first steps on the day would be a bite-your-lips and grimace experience. In fact, I usually wake up at least 45minutes earlier, turn up the heating (which thankfully, is right beside my bed), and slowly "roast", gently moving myself, changing positions, stretching gently, until I feel my joints are ready to do their work-supporting me when I stand up, and also allowing me to turn on the tap and wash my face, brush my teeth. I depend on my husband to make me a cup of coffee, as my hands are unreliable in the mornings.

Despite waking earlier, I still arrive at work late. Sometimes I leave late because I could not really "move" yet. Sometimes because it is too cold, that I hoped an extra 10 minutes of sun would have made the walk more bearable. And always, it means I walk more slowly than usual, turning a 30 minute walk into 45 minutes. Sometimes, I am just too tired to get up, honestly. Too tired, despite all the sleep. And more tired, at the though of walking in the cold.

So, for more than 2 weeks I have been turning up to work late, and avoiding housework.
On the first work day this year, I called to report I had a bad thumb-right thumb. My tenosynovitis; a nerve must have been hit, again. My best treatment is ---REST, gently massaging it and slapping on lots of NSAID gels. Experience allows me to hazard a guess, whether I should risk it-continue working as per normal, or rest it till until the swelling and weakness goes down. I decided to rest it.

That is a decision which is getting me into trouble with my boss, thanks to a co-worker.
In life, you meet nice understanding people, and then you meet those people who say things like...

"there is something called the 24 hour virus, usually caused by hangover, or going for a job interview...."

"people take take sick leave when they are not happy with their job, and because they can"

"....."

"........."

There is one such person at work-the boss' favourite chap. Ouch. Yeah, ouch. I know that he has been back-stabbing me for coming in late. Two off days in 2 weeks. I am replacing these "off days" on the days which i am not supposed to come in, that means I am not taking sick leave at all!!! However, a meeting was postponed because of me, and someone happily took the chance about inconvenience and loss of productivity caused.

I need not go to describe what are the subsequent things that followed.... I know my job is at stake.

For someone unreliable like me, things like coming in late and taking sick leave is easily used by colleagues as a weapon in office politics. I am just having a part time job now, and yet, I cant escape the politics! Blame it on my inability to drink with my boss, or join them for a steak. Join them, and it is "I thought you cant take this---therefore you are faking?" Dont join them, and you are immediately vulnerable to the attacks from those idiots.

Sigh.............

How can I blame others, when this morning my own hubby complained about me being lazy, and telling me it is my turn to do breakfast? He is sick of his own cooking, and asked when I could start cooking again. He is trained as a MCP by his mum, and I know too well the effect of a long telephone conversation with his mum had on him. It always results in him complaining he had helped me a lot with the housework, like he cooked the dinner for me (when he is eating it too!), he helped me washed the dishes, he did this for me, did that for me. He does not realise that, and I did not have the heart to say it to him. I know his mum is everything to him, and would not want to do anything to make life difficult for him.

I usually do most of the housework. Did he not realise that my hands have been swollen? I am tired? Well, he is tired of me being sick and tired. My hands almost have a permanent mild swelling in the past 2 weeks, and he is so used to seeing it-it no longer hurted him like before. I almost broke down and cried in the kitchen, when I struggled to fill the kettle. My own husband.
In case you ask me how could I type so much when my hands are in pain, let me tell you....this entry, took many hours, and lots of physical pain-in exchange for a chance to vent off. Yes, it is all in the brains-FMS or even my RA. It is all in my brains, because I need to struggle with these sort of things, anytime. And shut up if you tell me you dont feel like getting up in the morning too. Unless you have RA or fibromyalgia, you would never understand how tiring it could be. It is a long constant battle on many fronts. Tiring. Tiring for me, and tiring for my family too. In case you think it is easy for my hubby, it is not. I think he realised that he cant even show that he is tired, like what he did this morning. When he does that, that saps last bit of energy from me.

Bypassing the pharma companies

Read the following on BBC, and really trilled with it. Well done! 3 cheers for the profs!

"Researchers who have found a way to bypass the legal patent on an expensive drug say others should follow suit...
...
They have also called on other universities and charities to retain the rights to new discoveries, rather than sell them to big drugs companies."

Original article on http://news.bbc.co.uk/1/hi/health/6224601.stm
I do love to see these trends develop!

where are my friends?

Reading through my post about teh Tsunami, I realised have always been there for my friends, through thick and thin. This, I can honestly say so. People will call me if they are in trouble. People will email me if they need help. They know I would go all out.

But where were they when I had fibromyalgia?

Fibromyalgia is such a misunderstood thing, that none.. NONE of my medically trained friends provided any sort of support except one, my university classmate who ended up as my colleague. She saw my fight after my slipped disc, and knew I am a fighter. She also happened to read up a lot about fibromyalgia because of her work. Although she was doubtful at first- people like ME was not supposed to get fibromyalgia, eventually she offered me comfort. She made me feel alright, that I was not crazy. I almost thought I was crazy, as anyone with medical training did not recognise my illness. I was deserted!

The other person was my ex-"neighbour"in the hostel, who lived next to me and brought me dinners when I could not walk because of my slipped disc, who saw how I limped and dragged myself to exams, and practically learned how to walk all over again after my operation. She totally have no idea about anything medical as that was not her major. She saw what happened to me, and believed I had a really serious problem. She was my angel.

The rest?

If you are a fibromite. You guessed it.

That is why we need awareness. My experience tells me the worse responses were my medic friends, with doctors leading the pack as "MEAN"ies! If doctors have this misconceptions, is there any wonder why we hardly get help?

Do not be silent. Our silence means others will go through what we went through. That is why I blog. Other than as a form of release (to whom could I complain about my deepest pains and fears?) I hoped to enlighten 1 soul or 2 more. These 1 or 2 more souls could have made a difference to another sufferer.

My fibro is here, I need to concede. I still have the symptoms. I just hope that i am well enough to keep this part time job. My grammar has gone to pieces,I often cannot believe the sentences i composed when I reread again, I use inappropriate words without realising, I am tired before the end of the day, I still cant keep normal sleeping hours............but I am trying my best. I try. Really hard.

Does anyone understand me??

Have you heard of DYS-au-to-no-mia?

This is a lovely poem by my friend, Joanne.
I have read it many times since she passed to me a few hours ago. It was lovely, and tells vividly the story of brave and bubbly struggling with dysautonomia.

Loneliness
It's a strange feeling
Being around people you know
And yet feeling like there's no one there

In the day when the nausea starts
Feels like your world has stopped
And yet around you
Life still goes on

Your world spins and a strange sensation
Washes over you like a wave
Your world is moving
And yet everyone is standing still

Its all you can do to lie down
You push your feet in the air
You just want to cry out "help me"
All you get is stares

Staying there on the ground
Taking in deep long breaths
You seldom get a comforting touch
Someone who says "I'm there"

Soon you will feel better
You sit up on your chair
People think that it's the end
But it's the start of the aftermath

Tiredness.
The first sensation you notice
And then the pain begins
Overworked? But you haven't done a thing!

A heavy weight presses down on you
Your heart, your chest it aches
You want to cry out, but you bite your lip
Only babies act that way

Looking for support from those around
You reach out your hand
But familiar faces hurry by
"We have our own cares"

Resignation.
The point that we all come to
Tired of explaining
Weary from arguing

Faced with the fact that you fight alone
Makes it a fight full of tears
The mountain seems high, the journey long
With endless thorns and spears

Hope.
The glimmer of sunlight behind the clouds
A promise of brighter days

You hold tight to it inside your heart
Believing everyday
Some day things will all work out
We'll hang on until that day

For your information Joanne had fibromyalgia too, and other "interesting" stuff as well. She has been my inspiration since I had this "interesting" thing called fibromyalgia.

One Boxing day - the Tsunami was so near....

Finding out about the Tsunami was just like finding out about the 911 attack. I can remember the time, and the position of the television. But the Tsunami thing did not hit me so much as much as the 911 attack in the first 5 minutes.

The news showed footage of waves, coconut trees felled and ruined beaches. As I followed the news, I became more and more uneasy. I knew the death toll was going to be high, really high. That evening, news about Banda Acheh have not even filtered through to the main channels. It was Boxing day, and I knew I would definitely have some friends or colleagues in these places.

My friend and his parents were at Sri Lanka!
One of my friends brought his elderly parents on a holiday for the first time to Sri Lanka. That guy worked his ass off, and had accumulated enough air miles to put his parents on business class. We were talking about how proud his parents would be-flying business class for the first time in their life! I remember him telling me about going to the beach!

I started to message friends, and I received many messages from others. I supposed we were all "taking head counts". We were all busy trying to find the friend who was in Sri Lanka, and really worried for him as he was supposed to be at the beach! Our only consolation was this was probably the smartest guy we knew, he read like crazy, and you can't find a topic that he does not know much about! He would have definitely identified those early signs of a tsunami! Yes, he would! This was a physics champion and he definitely would have sensed and calculated that the waves did not look right, and fleed!!! We did not sleep well-needless to say.

By the next morning, I know almost everyone who could have been there was not there, and safely at home. The friend in Sri Lanka managed to get the word out that he is safe. They went to the beach, and left the day before. Somehow, they had changed their mind about staying a few days there , and decided to leave earlier to the hills and visit the scared hills. They had reach higher grounds when the waves hit, and quite far away from the ensuing chaos.

I went back to the office and check out my Thai and Indonesian colleagues. Lovely people, who I hoped were alright. Everyone was alright, some of our offices had missing people, but they were doing all they could to trace them.But I was still feeling uneasy, really uneasy, and totally restless.............

Then the next day... I could not remember whether I smsed her or she smsed me! JA was my best-est friend through my secondary school. We went everywhere together, and people always referred to us as twins.

JA was in Phuket!!!

JA was trapped in Phuket!!!
All communication means were cut off and it took her days to be able to hang on to the last bits of battery left in her friend's cellphone. They had walked miles in search of telecommunications signal!

JA had the most narrow escape. It was as if some special power, which JA, a Christian think was God, was there to put them away from harm.

On the spur of moment, JA and friends changed their holiday destination from Penang to Phuket, as her friend had a friend who worked in a church there. So, they went to Phuket, and stayed with the local pastor's family.

They were supposed to be out snorkeling the day the waves hit. That morning, the Pastor's young daughter was being "uncooperative", and threw a bit of tantrum. As a result, they were delayed, and went to their snorkeling boat about 30 minutes late-the last people to board. If not because their friends knew the boat people, and out of respect to the pastor, the boat would have definitely left. When they went up the boat, they received quite a lot of glares from other tourists. 30+ minutes out of your 3 hour- snorkeling trip was a lot of time!!!

Shall I say the little girl's tantrum saved them? Or shall I say the boatmen's respect of friendship (which is typical Thai thing ) saved them? Had they not insisted to wait for their friends, despite the complains of their customers...

JA's boat was still in the deep waters; she was on the deck, looking at towards the beach and shallow water. She was admiring the breathtaking beauty of the bay, and anxious to join the other snorkelers who were already in the water. (she was unhappy with the little gal's tantrum too!)

They were the last boat to arrive, and was terribly late. So, they had to wait for the smaller boats to take them to the bay when they saw the waves came. They felt the waves lifting their boat, saw it rushing to the shores and grew bigger and bigger...... and according to her, saw the unbelievable thing.

Everything was smashed. The green outline of the beach and islands were wiped off. Green landscape became brown, or just disappeared.The snorkelers in the water?? Some of them just disappeared! After fishing some survivors out of the water, their boat went back to the mainland, and was greeted with a picture of total devastation.

JA is a doctor, and probably the kindest, toughest gal I know. She could deal with all the unthinkable things in the slums of India... but she was totally helpless in Phuket.

She was messaging me, begging for medical supplies! Alas, tried as hard as I could, I could not send her anything. Everything had to go to the Red Cross. According to JA, foreign help did not arrive, despite everyone donating like crazy!!! The locals had to depend on themselves. Whatever they had, came from the nearby poor villages. After a few days, JA, not able to do anything there, came home. Her parents were worried sick. After a week of pulling together a jeepful worth of supplies, she went to Banda Acheh, and began another humanitarian nightmare. Banda Acheh was worse hit.

Those were the days I slept with my cellphone next to me, and never had my cellphone away from me. At anytime, she might need help, or just someone to talk to; like the time her jeep broke down in a dangerous area. I also had to warn her of the latest news about the Islamic insurgents there, and nagged her to remove her cross! (which she already did, at the urge of the locals) These people are known to rob and kill the very people who tried to send help, just to get their hands on the medical supplies. Selfish bastards who tried to stock up their own medical supplies at a time of great crises. My fibromyalgia was already with me then, but I managed to find enough energy for all these.

Yes, the tsunami was that near me. It is something which I will never forget. If JA's boat went off 1/2 hour earlier.. I would have lost a friend. The world would have lost an extremely petite (40 kgs!) feisty gal who did whatever she could for those who needed help.

JA is only one of the many individuals who did this selfless thing. All the hue and cries from big charities for donations did not seem to result in much help to the locals. 2 years later... BAnda Acheh is still a picture of devastation.

So, where did my (and your) donations went to? If there is a "moral of the story" here, it would be I will never give my donations to those big charities again in times of major crises. I will look for individuals like JA. Small as their group might be, but their little jeep had reached a few villages, and treated many victims who had fled the Tsunami. These are the places where every tablet of antibiotic and every paracetamol tablet counted.

New year.. new beginning.

It has been more than 1/2 years since I was "suspected" to have fibromyalgia.
When I reflect back, life had been a roller coaster since then.

I lost my job, I almost gave up my PhD studies, I struggled being "unemployed" (financially and psychologically) and went through days where I had no recollection of what I did; almost knocked down by cars and lost my coherence-both speech and writing. The fibrofogs almost drove me insane. There is no way I could ever relate my frustration to others, and make them understand the kind of agony I had. For the first time in my life, I feared. I really really feared. I had never had so much fear for myself-not when I had to go through a risky operation for my slip disc where one wrong cut would send me to a life on the wheel chair. No, that did not worry me much. I always thought as long as I have my mind, I can overcome anything in this world, a wheel chair prospect was not that bad at all.

But fibro was scary. Really really scary. Of all the "conditions" which I had in this brief live, fibro is the scariest, although my slip disc was the most painful thing I had. Fibro fogs threatened my identity, more so than those missing periods and hairs due to PCOS or a bulging waist line which is the permanent joke among my "medical professional" friends.

I vow to appreciate the best thing my parents had given me-my mental faculty, my MIND. It is this tough, resilient mind which had pulled me through countless things. And to say fibromyalgia is all in the mind? That is just what some weaklings would accuse us. I am sure those weaklings would have crumbled and crushed by the burden of fogginess and chronic pain and fatigue that fibromites experience. It has a lot to do with my mind though, as it threaten to chip it away, and I got to depend on my brains to waddle through this condition where you get little help (or sympathy) from others!

I seem to be out of the deepest, darkest hole now. I now have a part time job, completed my thesis. 2006 had been good to me. I just hope that 2007 will be as good, if not better.

Why Bigger May Be Better

Epoch times published a nice article about weight:

"In the light of this and other existing evidence, the BMI is looking increasingly obsolete as a useful body measure. My guess, though, is that certain factions will continue to cling to and promote the BMI. Why? Because using the BMI, rather than the waist-to-hip ratio, will ensure that more people will be under the impression that they need to lose weight for the sake of their health. And that means good business for the diet, food, and pharmaceutical industries."

I must say I agree with this piece of article. Keeping our weight within a healthy range is definitely important, but the BMI is just so "passe". While there are so many factors which could contribute to your weight, it takes in to account your height only. That is it. Why are we then slaves of BMI? The reason is simple, BMI is easy to calculate, and easy to "sell"! There are many other ways to measure "healthy" weight, but those were too "complicated" to be massed produced for clinics, internet and the freebies which come with your diet packages.

So, binged during Christmas? Eat healthily in January then!

Merry Christmas!

Merry Christmas everyone. Hope that your joints and all behave themselves.

I have got a small flare going on. Have been getting bad sleep for a couple of weeks and I think this becomes part of the vicious cycle. I am now trying to rest as much as I could. Hopefully, I will have enough energy and all...

I have came a long way since 2 years ago. Boxing Day 2004.

Then, I was watching my health going downhill, and stuck with a job which I was terribly unhappy with. I probably worked/slept through it, only to get a shock on Boxing day about the Tsunami. The tsunami was very very NEAR me, not in physical sense, but emotionally.

I shall try my best to blog about it. I hope I make it this time. I tried to blog a piece for Darren's group blogging project, but was not up to it. Aching joints and all, I just tried to stay afloat with with work, and my life. I have been really really tired the whole week, and terribly tired now. I am just trying to hold up, and try not to sleep until night time, with the hope that I will get deeper better sleep, despite the joint discomfort and all.

Christmas is spent at home again this year. Far away from my family and friends. I would really like to email everyone to wish them merry Christmas.. the heart is willing...but the flesh...

Watch out for this space!

Basin and Hot Towels-Tip to to survive this Christmas

HOT towels!!

This has worked well and conveniently for me, that I wished that other fibromyalgia or rheumatoid arthritis would benefit from it too. This has been mentioned before in What works for my fibromyalgia, so far. [These works for my RA too!] The weather has been uncharacteristic lately, with some places really getting much colder than it normally is!

I have been walking 1/2 hour each way, to and from work, a couple of times a week in freezing temperatures and have been "defrosting" myself with the basin/towel method.

The tip first came from my dear rheumatologist who told me a simple quickie way to "defrost" my stiff feet and hands in winter- hot basin of water. All I need is a kettle to warm some water, (and someone to help with kettle sometimes) and a basin.

I have since modified it. I use hot water from the tap, and run it into my wash basin. (No kettle, no danger of scalding). I soak my hands in the hot water to help with the stiffness.

For other areas, I use a small face towel to soak up some hot water, and put in painful places like my neck, knees, shoulders, elbows etc. Works well! The only "side-effect" of this method is it is rather drying to the skin. That is not a problem as I apply Tiger Balm/Bengay Gel/NSAID gel after the hot towels. The heat from the towels increased the blood circulation to the area, and the gels get absorbed quickly and works better. Just be careful not to overdo the NSAID gels, as the NSAIDs do get absorbed quite a lot this way.

The advantage of this method??

• You literally have some relief on the tap.
• You can even do it in your office pantry, toilets at work.
• When visiting friends/staying overnight, have some towels with you. You can have do it in the discretion in the wash rooms, if you don't want to alarm others. We don't want our illness to replace the Christmas craker jokes as the focus of dinner, don't we? For the towels, be creative! Even those cheap flannels (or dusting cloth!) than come in packs from the supermarket, and literally "disposable" could be of use. Just bring one along, use and throw! (errr, I hope the environmentalists won't yell at me for this suggestion). Try it out at home first, and see if it works for you.

Hope this helps. Merry Christmas and Happy New year.

And please please let me know if this helps, or you have other methods to improvise on it.

"living with fibromyalgia"-can't it cross borders??

I have emailed the UK fibromyalgia association, wondering if they will consider screening it.

Apparently, they thought that people in the UK will not be interested with something from the USA. Is that so???

What works for my FIBROMYALGIA.. so far?-Dec 2006 update

I am updating this from my June 2006 List.
After more than 1.5 years since my diagnosis, I am getting my hang of managing my fibro.
I used to think that my education is wasted, since fibro, ra and all these health problems prevented me from working full-time, let alone in my trained profession. 1.5 years later, I realise how lucky I am. It is almost I am trained to handle my own conditions, as doctors (except a few angels), have failed me desperately.

Things that make me feel good, or help to stop an flare in its tracks...

1) Avoid beef and red meat like hell
Of course this has no "scientific prove". I was a non-believer in food-RA/FMS link when I noticed that I get flares after taking beef, or lots of pork. No more whole Big-Mac for me, just a small bite now. The pain I get is not worth the bite.

2)MASSAGE, especially Tui Na or acupressure
I have since heard from others that deep tissue massage works well too. A good acupressure or Tui Na practitioner is really hard to find in Europe/US. I will try out deep tissue massage and compare how it goes.

I have also purchased a "massage belt"-which is essentially one vibrating thing (image from osim.com). I bought one from OTO (another brand). These are hugely popular in asia now for "slimming", but I have since found better use for it. I use it on my thighs, calves, bums-places which are "fleshy" enough. I slap on my NSAID or Tiger Balm on those sore/painful/tight areas and run the machine. It works pretty well, and save me many trips for a massage!





3)Alexander Technique lessons and "practice" at home
AT is probably one of the MOST USEFUL thing I have done for my fibro!

4)Stretching!
Done every morning, without fail. It can be painful, especially when my RA flares. I use my massage belt to warm up my muscles before I stretch.

5) SLEEP
The most important thing to have, but the most easily affected/least controllable factor for me. When fibro is hitting, everything becomes painful and deep sleep is really a luxury. Sounds familiar to you?

6) Take lots of fish and omega 3 oils, antioxidants when it flares
I suppose it works for me because my fibro almost always come with my RA?

7) Ginseng and Gingko (for my brain fogs and speech slurs)


8) Muscle rubs-esp Tiger Muscle rub or Tiger Balm
Great with massages, and the massage devices to "heat up" and loosen those painful knots/trigger points.

9) Hot bath! (with Lavender essential oil)


10) NSAIDS...
The issues surronding side effect of NSAIDs, or painkillers as a whole has prevented many people from actively managing their pain.


11) Avoid using a LAPTOP!!!! (NEW! Dec 2006)
I am not kidding you! I have resumed working part time, and use a PC in office. It is a REAL difference! A few hours spent on my laptop on my "off days" is frequently more tiring than a full day with the PC in office. I think the way laptops are made and used encourages poor posture. My neck, shoulder, hands and upper back takes the brunt of it. The painful areas around my elbows, shoulder joints and upper next area quickly develop more hard painful "lumps" (as I call them). These are bad enough to cause me to feel dizzy sometimes. After the massage belt, a home PC will be my next investment.

(I took a short break at this point of writing... to do the following...)

12) HOT towels!!(NEW! Dec 2006)
My dear rheumatologist was so kind to check out what works for winter for me. He told me a simple quickie to "defrost" my stiff feet and hands in winter is a hot basin of water. All I need is a kettle, (and someone to help with kettle sometimes ) and a basin. I have since modified it. I use hot water from the tap, and run it into my wash basin. (No kettle, no danger of scalding). Then I soak my hands there. I use a small face towel to soak up some hot water, and put in in other painful areas like my neck, knees, shoulders, elbows etc. Works fine. Only "side-effect" is I find it rather drying to the skin. That is not a problem as I apply Tiger Balm/Bengay Gel/NSAID gel after the hot towels. The heat from the towels increased the blood circulation to the area, and gels get absorbed quickly and works better. Just becareful not to overdo the NSAID gels, as the NSAIDs do get absorbed quite a lot this way. The advantage of this method is you literally have some relief on the tap. You can even do it in your office pantry or toilets.


Others:
Amitriptyline ease a lot of the pains, but I am so fatigued and knock out by it that I will end up able to do nothing but sleeping. I try to stay away from it.

Beware of many things peddled in the internet. Many of these "cures" tried to sound scientific, but provides me with nothing more than a good laugh. Please also beware of people advertising their credential as "Dr" so and so. I know that you could pay US1-2k, and get a PhD in 6 months from some dubious "universities". Some people are out there to make a quick buck out of our pain . And anyone, including myself, would be tempted to "try things out" when we are really really desperate for some escape or route out of the misery FMS and RA could bring.

Technorati Tags:
chronic pain; fibromyalgia; chronic fatigue

Living with fibromyalgia-the documentary film

Living with Fibromyalgia

Has anyone seen this yet?? I am thinking of watching this film, but it cost $19.95 (USD) to order the DVD! It is a little to expensive for me, in this state. I have barely got my feet on the ground again, and still clearing all those debts.

Please think of a way to get your national TV to screen it, that is how the impact of this film will be maximised.

Watch this space.... I will try to find some info about how to pester stations haha. Now that I feel better, I will expand my energy on this!

18th Dec 2006

I have written to the UK fribromyalgia association, wondering whether they are planning to screen this film. Apparently, they have not heard of it, and dont think people in the UK will be interested because it came from the USA. Is that so??

No news is good news

I have not been blogging much.

Have been "busy", with alternative activities which do not involve using a computer. :) Reading books, and catching up with life again, now that my FMS and RA seems to be better. That PCOS which I have need some serious attention, and I have been doing some reading up about it.

I am pretty well most of the time these days. Just a few bouts of fatigue, and also a bit of fog in teh last two weeks. Found myself writing, or rather typing weird things again. Haha. I have no idea who these spellings could be all garbled up. I also used wrong, inappropriate words to describe things.

As all for follow the blog knows. I am in healthcare. Well, that is as much as I am comfortable to leak off. The healthcare world is really really small, and you will soon realised that everybody knows everybody. No, I am not joking. It is true.

Now that I am back at work, I see how health care professionals as a whole behave again. Sometimes I see sad things. Ok, it should be I often see sad things happening. Sigh..

Why am I saying this? Probably because I am reading The Constant Gardener. Finally, I find time and strength reading it. It is a heavy going book. Not for the faint hearted souls who have to work closely with the pharma boys.

... gtg. TO find my massage therapist. I am "well", but being a fms case, there is always a threat looming its head here and there of a relapse. I know I am near one, if I dont take care.

Someone left this comment....is it all in my mind?

It was clearly meant to be warm, written with no malice. Only good intentions, and maybe a little of puzzlement/irritation about what all the fuss about fogs and all. Millions of people are dying of AIDS and cancer everyday, isn't it? Good intentions, and hope that it would help me with my fogs.

But it is chilling, isn't it? What well-intentioned people say to us-fibromites?

The misconception is "It is all in your mind- Therefore, you are like this". Worse till, this person seemed to congratulate me for getting my "wish".

I do attempt to "correct it". My response?

Yes, it is all in my mind!! That is why I am alive and kicking (flailing, and frozen sometimes), managed to keep sane, and lead a relatively "normal" life!

The comment was left as a response of my entry about FIBROFOGs (Fibromyalgia's Fibrofogs: How does one cope with it?) Please see the original post for my reply to the comments.

The comment:

"I appreciate your condition! However conditions are subject to change depending on how you have styled your life!

I grew up in a neighborhood wherein there lived a lady with many children, a husband and few, if any organic illnesses!

By the time her youngest child had left the nest she was totally disabled with fatigue and claims of illness that doctors just could not find within her!

When her children or a friend came to her with a problem or an illness, she always found a way to outbid the problem or illness of the child of friend!

Alas, she became what she thought
and what she thought was more important than what she did! She was so consumed that she could only see what was most important to her!

She proclaimed that her death was imminent from the time she was sixty [60] and forward!

She lived to be ninety two [92], outliving her husband who did have illnesses, but never proclaimed them!

Part of being is what you think!

When did you last visit a cemetery, a youth organization and volunteer to help, offer to help meals-on-wheels or any number of organizations and venues where your 'ailments' would be but imaginary vis-a-vis those of the ones you serve!

The fog is yours because you wish it so!

Ride to the sunlight and your fog will disappear!

See the world without you in it, and you will see the beauty of the interactions you may style in the world!

8:06 PM, September 21, 2006 "