Sunday, September 16, 2007
That is how I feel?
No pain, no tears, no sleep, no smiles...
No wish, no hope.
Only silence, some resigned sighs..
Resigned to a thing called fate, or destiny?
Is this good enough?
Is it unacceptable?
Do I deserve something better?
Am I not worthy at all?
Do I live with it?
Can I walk out of it?
Am I hoping for too much?
Do I deserve something less...now?
Because the body is broken, so must the soul?
I have a "lesser " body,
SO must I have less of everything too?
Love, respect, dignity?
Wednesday, May 09, 2007
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.
Sunday, April 22, 2007
If I dun massage, I feel that my muscles are tight and tender. If I massage I look like a battered wife.
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.
Monday, March 26, 2007
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.
Tuesday, March 13, 2007
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,
Saturday, March 03, 2007
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?
Thursday, March 01, 2007
"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.
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?
Wednesday, February 21, 2007
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.
Tuesday, February 13, 2007
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.
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.
Thursday, February 08, 2007
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.
Sunday, January 28, 2007
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
Tuesday, January 23, 2007
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"??
Monday, January 22, 2007
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.
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
As I got older, this became my mantra. An atheist like me actually loved this.
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. :)
Monday, January 15, 2007
- 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
-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!
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!
Friday, January 12, 2007
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
"Now fibromyalgia sufferers can learn how to quickly rid themselves of unnecessary pain and fatigue through xxxx'sSkeptic 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
So, a skeptical me went to the website to check out the program, and guess what, this it what it told me: (!!!)
Wow! They read my mind!!!
"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."
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
--Completely Eliminated headaches,
backaches, myofascial pain, muscleaches 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.
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.
Wednesday, January 10, 2007
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!
Sunday, January 07, 2007
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...
"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.
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.
Tuesday, January 02, 2007
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!
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.
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??
Monday, January 01, 2007
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.
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
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"
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
The glimmer of sunlight behind the clouds
A promise of brighter days
You hold tight to it inside your heart
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.
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.
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.
"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!