Spring time energy crisis.

Life seems to be getting back to near "normality"-i.e. I could juggle a few things at a time. I have been very busy at work, revising for an exam and enjoying the spring time activities!

However, I go get tired very easily. I sleep in the car journeys when we go out. I slept & snored(!!!) at the end of my yoga classes, and tries hard to keep awake beyond 11pm. Last week, I had to go for a deep tissue massage to ease the points which have been slowly developing as my body is finding it taxing to handle so much. The RA flared, and the tender points developed so quickly that it became really a pain!

I have taken a few days of study leave, but have been sleeping a lot.

All these reminds me to slow down. Life is getting back quite normal, but my energy level is still playing catch up.

Fibro---> Bruises?

The cold had probably brought on my fibro. Now I have about 15 painful points, at least. My forearms are bruised, after I tried to massage myself. The bruising seems to be part of my fibro.

If I dun massage, I feel that my muscles are tight and tender. If I massage I look like a battered wife.

Conquering mountains?

It has always been my wish to conquer a mountain.

Last week I thought I could start small, by trekking a national park, and checking out a few waterfalls. Unfortunately, my hubby passed me his cold and i was so lethargic that the trip became a "driving holiday", with me sleeping in the car. I still have a long way from being fatigued to conquering mountains.

Being fibro means clumsiness is part of me. My life was at risk when I repeatedly slipped on my trek to the waterfalls, but I still persisted! I just wanted to do it! That was me, in the mind over matter mode.

Then perhaps the most primitive fight or flight instincts kicked in. I had the most beautiful and dramatic panic attack at the narrowest section of a cliff, and dramatically cling on to tree roots etc to crawl myself back to safely. My legs turned jelly.

trying to forget

Sometimes, I try to forget that I have RA, I have fibro. Sometimes, for a couple of days in a stretch, or even a week or two, I can "forget" about these things-when I am extremely busy, and barely have extra energy to think about my health, to get bothered about the stiff hands in the morning, the achy ankle, the wobbly knees. I try to live with these discomfort, without really wanting to "notice" them. And sometimes I succeed, in trying to forget.

Almost two weeks whizzed by without me noticing. I sometimes surprise myself about how short my memory is getting, esp when it is about my RA. Perhaps it is a coping mechanism? I block off memories of days in bed?

No, it has not been all quiet in the past two weeks. I had swapped a day at work, because my bones were achy all over, I was too weak to "get up and go" in the morning. My bones have been actively fore-casting the weather. A day or two before they announced the cold snap was coming, I was already in bed, aching and cursing. When the cold snap came, I always felt hot and found the heating required by my hubby to me too much! Will they employ me as the weather woman?

And just now, I almost drowned. OK, that is an exaggeration. I had many mouthfuls of water and someone got to give me a hand until I find my footing. It was really scary. Really, really scary.

In movies, you always see people shout when they drown or struggle in the water. In reality, I don't think people always do. I was gasping for air, trying to "jump" up by pushing my feet against the floor the moment I sink. I was fighting for air. That is they only thinh I had on my mind. AIR.

The reason for this misadventure? One tiny little finger. One small joint-5th proximal metacarpal. That was the only painful joint when I swam, and yet, was only when I was in the water that did I realised that he other hand which was alright was also weak. My legs were useless. I could not exert much strength.

How do I try to forget? Not sure. I think I don't have to try. I will forget soon. This is not the first time I almost drowned.

Best wishes for your incurable illness- an article from BMJ

I took the liberty of reproducing the content of an article from BMJ here, as I believe many fibromyalgia and chronic illness patients will fully agree with what Trisha Greenhalgh says. Trisha's articles always strike a chord with me, as I believe she is one academic out there who truly understands patients' views.

Best wishes for your incurable illness

by: Trisha Greenhalgh

"Get well soon" is a greeting from a bygone era, in which illness was generally acute and self limiting. These days, those of us on the shady side of 40 are as likely as not to have at least one disease that will not go away, and those over 65 have an average of three. A rising stack of policy documents seeking to address the needs of people who are never going to get better emphasises self efficacy, concordance, expert patienthood, peer support, and personal care plans, while professionals are taught to hang loose, applaud self management, and focus their efforts on the few who have advanced disease and rare complications.

The ill are no longer called "patients," since this term aligns with an outdated view of the sick role first proposed by Talcott Parsons, in which we took to our beds and exchanged our normal social duties for the attention of our relatives and the professional services of a physician. Society has moved on. The discourse is now all about accommodating the "ill" individual into a flexible and enabling society.

You know all this. It's been going on for a good 15 years. It is surprising, then, that it has taken until now for an entrepreneur to come up with a set of greeting cards called "Journeys" designed for people whose most optimistic prognosis is gradual but inexorable deterioration.

Have you got a friend who has been diagnosed with multiple sclerosis? Why not send them a card with "Don't give up . . . you're not alone. Don't stop believing . . . so many people care. Don't ever forget how strong you really are . ." Or a colleague struggling with a parent with dementia who may like to hear: "Watching a parent change can be difficult. Where once stood a tower of strength, there is now a person who needs your care." Perhaps your friend would benefit from a bumper sticker saying "If you're handed it you can handle it" or the generic pick-me-up "Don't give up hope, and it won't give up on you."

Hallmark offer their new range of greeting cards as part of "the new normal." It is, of course, both an idea whose time had come and an innovative way of cashing in on human misery. But if it was OK in the 20th century to make money out of "get well soon," surely it's OK in the 21st to help people say, "Hang in there brother/sister."

The article was published in BMJ,
link: http://www.bmj.com/cgi/content/full/334/7592/538-a

You can do it!

I have been doing really well at work, despite doing part-time and facing lots of issues from some idiots who exploit the fact that I work part time, and will call in sick time to time.

This has been a really good week for me, career wise. I get the kind of external recognitions for me work which I thought would take me many more years to achieve. It shows hard, honest work will eventually reap some rewards.

Internally, things can be still crappy, esp from a person or two. I do wonder whether the discrepancy between internal and external recognitions arise from prejudice or biasness from people who could see me unwell so often. I do ask myself, if I am well, will my some of my colleagues play down my achievements in such a cruel way?

But whatever it is, despite all these crap, I know I have done well. I take is as proof that we can still do what "normal" people do, and it is possible to get better. So, dont lose hope! Don't ever lose hope. Bring out all the guts you have to tell yourself that you will have a good, meaningful life, no matter what. Even when you are having so many tender points activated like me now:) I am stressed, but I know one day, i will be able to sing "My way". Yes, I will do it My Way, pains, fatigue or whatever crap. Remember the donkey?

Blogging to blot off stress

Laura(CFS Squared) had describe an email from e-how as a "divine intervention" her post about stress and CFS.

"Divine intervention"-I can fully understand her choice of words. My take about being a patient who face fatigue as an enemy is you get less energy than other "normal beings", but tiredness seems to be generating more stress for you!

Fatigue--> Events which generate stress---> More fatigue, less energy to deal with stress--> More events which generate stress---->....

It is a vicious cycle.

I think blogging help to blot off some stress,

As I commented in Laura's site, by blogging:

1) you have to crystallize your thoughts/emotions of the day, and try to put in down in words. A nice, calming self-reflection activity to calm frayed nerves.

2) You can read your old posts, and note down what stressed you, and what had helped. Often, kind souls will also pass by your blog to give you encouragements.

In addition,

3) When everyone is tired of listening about how tired you are, your blog does not complain at all.

4) I came home tired-physically, and tired of trying so hard to control my tears because of the crap i get at work. Yet when I turn on my laptop, read others' blogs and then try to put down my own entry, I have calmed down.

5) Sometimes, I also find myself rereading my post again and again (thanks to the fog-loads of errors!), to correct my spelling and grammatical mistake, and sometimes trying to "shape up" the plot. Of course, it was a night mare when my fogs first started and I had to read the horrible mistakes. Now, this process is almost therapeutic sometimes. Strange, isnt it? Probably it is all part of the coping process.

That is all I can manage today. I am totally tired.

I have a totally bad day.

At work, I have been picked on because I happened to do something better than a healthy young man, and this guy just could not accept, and gave me hell. He is one of those super ambitious type. I suppose "losing" to a sick woman who works part time is too much to his ego.

Sigh. Damn it if you do well, damn it if you don't when you a chronically ill. When I look at the situation, I am not sure I would like to "sympathize" the poor guy or myself. Who had it worse? A bright young man who saw everything as a competition and found himself "losing" to a sickie, or a sickie who gets the crap on after putting in every nanowatt of energy in her work.

I just have to remind myself that I have done well, and "normal" sensible people will be happy for me to do well. Or is it?

sick leave

Sick leaves make you unpopular.

Do we have to prove that? Despite the fact that I replace my all my "sick leave"-made possible by the fact that I only work part-time, I can sense the unhappiness in my boss's reaction. Sigh.. but what do you do when you come down with a flu or a strep throat like everyone else?

The other guys may just brave it all and stay in the office-productive or not, but for me... these are enough to make me lie on my bed, with my RA and fibro joining the party.

That is a depressing development. A few months into a new job, and I thought I am doing pretty well, and now I can see the fact that I take sick leave nearly every month (even though I replace them), people still find a way to talk. I am compared to the person with a visibly broken finger- with plaster and stuff to fix it, but what I have is invisible. The sheer fatigue and widespread aches brought on my something as common as a viral infection. The IBS joining the party etc etc. Here I am, being talked about. Sigh. Despite effectively having 0 sick leave because I always replaced them, that was still not good enough.

I just wish that I get better soon.

The treatable and the untreatable

Any long time illness could cause significant distress ...

difference?

Treatable vs untreatable

visible vs invisible

controllable vs relapsing and remitting

Fatigue attack.............

Have you ever had a "fatigue attack?"

I have been unwell the past few days. As yesterday was my day off, I went to the local bookstore with a large sofa to do some browsing. I thought sitting there was one of the most relaxing things to do, and keep me away from my computer-ie protecting the joints in my hands.

Usually, I could spend a day in libraries etc, as reading is probably what I love to do most.

But yesterday, 1-2 hours into reading something which I found hard to put down, I had to stop. I felt my hands could no longer hold the book open. My joints felt warm, and my whole body ached. I could feel my energy decreasing rapidly.

I quickly left the store, and tried to do the rest of my shopping quickly. A quick dash to the pharmacy, and the supermarket to get a few things I need. All the while, I felt my energy going down..........

I had called my hubby to pick me up, while I was doing my shopping to minimise my waiting time. I probably waited for him for about 10 minutes at the bus stop.

While waiting, after a minute or two, I found it difficult to stand, and so I leaned on something. In a few minutes, even leaning was no good, and so I had to force my bum to rest on the cold metal bum rests! My bums were frozen and the man at the bus stop looked at me like I was crazy to sit there, but I really did not have energy to stand! My legs were like jelly! By the time my hubby came and stopped the car 10 metres away from me, I struggled to get to the car. And then I struggled to walk up to my apartment.

Before I changed out of my clothes, I hit the bed, and feel asleep, until my hubby woke me up for dinner.

It still scares me now-the "energy crises" like these. Just glad that it is no longer a weekly or daily occurrence which drove me insane.

got to stop now cos my hands are getting really swollen. I have been naughty, I typed when I shouldnt.

IWWWIFBA=I will write when I feel better again.

IWWT-I will write tomorrow

IWWWIFBA=I will write when I feel better again.

Do you think these will be the "in" acronyms in cyber space?

How I wish to write these downs to reply my email etc etc, especially when I am in a midst of an attack. Yeap, my RA is back in town.

It did snow, and my bones did detect it.

So, now I am aching all over, feeling really tired, and my body feels warm at all places with joints.

That is rheumatoid arthritis. It comes back as soon as you wonder if it is leaving.


.........that is all I can manage today. IWWWIFBA.

Snow detector

My joints are snow detectors.

I know medical professionals will laugh at me- old wives tales, myths etc. But heck, it had been a hell of a sensitive detector. When the weather report says snow, and my bones are fine---> NO snow. When tehy did not report snow, and my bones said "snow", it SNOWED.

Do you think they will hire me? I could be their complementary forecaster. I just need to hang around and take note about how mu joints and bones behave.

everyone says SNOWMAN tomorrow, and yet my joints have not detected BIG snowman. Lets give it 8 more hours.

Catching up with life-movies

I have been feeling tired yesterday and today. No, it is a tired is a good way, if you know what I mean.

I have been watching videos for a few hours at a stretch!

You see, life was at a stand still when i was struggling with my thesis and fibro/RA in the past 2 years. I did not have the energy to even do my work and carry on with the basic things in life-like cooking, getting some groceries etc. Reading and watching films are energy sapping activities, no matter how much you love or enjoy it. You cant do it without knowing that after 2 hours on it, you will have no more energy to do other things. 2 hours of play, followed by many more hours of recharge.

I was like a battery which spent more time recharging than being available for play.

Books were not so bad, because you could read for an 10 minutes or an hour-sleep for 1/2 hour if you are tired and then continue. Movies dont work that way. If you go into a cinema and feel sleepy after 30 minutes, you wasted a trip and come out feeling like you have fallen into a ditch. Even with DVDs or VCDs, having to pause 1/2 way to sleep means you can only watch it alone, and even if you do, you will not enjoy it.

That is how I accumulated so many things on my "wish list"-things to read and to watch.

Today, I am tired again, after that many hours of watching videos. :D

This much energy........

I only have <-this-> much energy.

Abide says she is the queen of denial.
So am I.

Sometimes I refuse to admit that I am sick. That managing 3 full hectic days of work a week is a miracle. Completing my PhD is a miracle. What more should I ask. I should stop all these denials, and perhaps admit that I am sick. Defeated.

But it is difficult to do less, when statistically you know you will probably live shorter number of years than most people. The respected journal, Rheumatology has a debate on What kills RA patients? in its editorial.

I have long known that normal life expectancy numbers don't hold true for me. If life gotta be short, why not let it be a burst of brilliant firework?

But fatigue brings me down to earth again. If I overspend, I will pay for it, with interests. True for credit cards. True for energy for a fibromite cum RA patient like me.

I dont care about debates of "cure" for RA. My question is, "is there a cure for fatigue"??

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!