Monday, March 26, 2007

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.

Tuesday, March 13, 2007

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,

Saturday, March 03, 2007

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?

Thursday, March 01, 2007

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?