Wednesday, April 30, 2008

Getting up is hard to do..getting to work is a military plan

Getting up in the morning is not easy.

That is an understatement for someone with rheumatoid arthritis.

How would you feel, if you wake up every morning feeling stiff and sore all over the place? You might also feel like you need a few more hours of sleep. That sense of "tiredness" is completely different from the "tiredness" that most people have.

The first step of the day for someone like me is most likely greeted by pain.

Quite often it takes me a good 1/2 hour before I could take my "first step" in the morning. A good one hour or more before I could walk to the bus-stop. And I have to plan. Plan such that I could avoid the peak rush hour. Either go slightly earlier than everyone, or later. AVoid the trains which would reach the central business district between 830 to 9 am. Avoid the buses which would take people to the trains station so that they could catch these trains. Plan. Plan. Plan.

Perhaps why that is why I was awake at 5 in the morning. I woke up before the alarms rang. Probably worried about getting to work. I have an important meeting at 10 today, and I must not must not be late. I am thankful that the current employer really enforce the flexi time policy, and respect the core hours stated. No important meetings before 10 am! Hurray.

If I am stressed enough to get up at 5 for a meeting at 10, imagine what my life was when my former employer liked to have meetings at 830am, and thought a 9 am meeting a big compromise for my sake? And I remembered when traveling with her, she was unhappy that I was down for breakfast only at 7.15 am, when I should have been there at 7 (but really only need to be there at 8am?)

I believe I am not alone. As I type this, there must be thousands of others people with RA, making significant but understated efforts just to get to work. Just to work like a "normal" person. Out of all these people who made the efforts, there may be many who still could not get to work "on time", simply because the stiffness decided to last longer than usual on a particular day, or limitations in the mode of transport.

The governments should look at ways to allow some leeway for patients like me to do what we want to do. Getting to work. Most patients with RA want to work- if only we could, we would.

Tuesday, April 29, 2008

How frequently do I blog?


Someone left a comment, wondering why I do not blog EVERYDAY. This person is starting a blog about rheumatoid arthritis (cures!) and wonder why I don't blog everyday.

Hmmm... if you truly understand RA and FMS, you probably won't expect the patient to blog every single day? Only those who are very well controlled could probably do that!

I hardly have the energy to blog after a full day's work.

Keeping myself in a condition where I could just do what everyone is doing requires great efforts and discipline. Not to mention that i can only blog when hubby is not around me. That is another great effort. Today is a rare day he sleeps before me.

I have been feeling really tired after work each day. Had this "small" flare going on. So, I just have to focus on rest, and "functioning" for the time being.

Friday, April 25, 2008


Thank God It's Friday!

Although I love my job, it had been a stretch this week! I have not been feeling well, and had been sleeping late!

The boiler had broken down too. It is amazing how many days it takes to "cure" a boiler.

Sunday, April 13, 2008


I am scared. ...

I am scared i am onto a big flare...I have had a sore throat last week, i got better, but my joints get more active, and i am really getting more tired each day.

But hubby cant get it... he is fighting about he being more tired than I am this week, since he did the cooking and quite abit of the washing.

When is he going the get it? I am tired beyong words. I am simply fatigued and in pain.

Thursday, April 03, 2008

Alternative therapies-on BBC

BBC is running a series about alternative therapies, investigated by the very good looking Professor Kathy Sykes. You could view them at this link.

Just need to search "alternative therapies".

Last week was about reflexlogy. (This week was about meditation, but I have not viewed yet)

Although they found no solid "evidence" to show how reflexology could work and therefore could be useful, an investigator in the series from LA had said that people with fibromyalgia had been reported to benefit from massage.

"Benefit from it?" Yeah! I can vouch for that! Give me massage over NSAIDs anytime for my fibro! And mind you, I mean deep massage which tackles my trigger points. Not just gentle stroke for relaxation.

The end of another work day

Yes, I made it to the end of another work day. And goodness, it is only Wednesday!

The week felt extremely long, since the RA is having a party right now.

The good news is my GP could finally refer me to rheumatologist, after my former rheumatologist wrote a long letter that I really had RA! Bless that good man. And bless my new GP who was willing to listen and did what was needed to get pass the red tape and get me a referal.

If I have the power, I would make it a sin not to allow patients with RA and FMS get properly followed up by specialists!

Tuesday, April 01, 2008

Too hard to understand?

I survived 4 full weeks for full time work. Amazing?

Yup, I did it. Despite a bit of flare and bad stiffness in the mornings, I braved myself to work. It helps that the new place practice flexi hours, so you could go in anytime you want to before 10 am. No one bats an eye lid.

The spring is here, and I am eyeing some long weekends away- a host trip will really be good for me. It is some sort of reward for enduring the pain. Try standing 1/2 hour ankle swollen, toes screaming in a train- as your body sway when the train accelerates and decellerates, you feel your weight shifting between your legs. It is obvious- when it is painful.

But that got hubby all angry. Angry that I wanted a break, wanted a holidays, when i am just so new in my work, and have a bit of income. Can't I wait?

Wait? Until when? There will never be a good time. And dont tell me about "post-retirement". If my bone creaks and screams when I take take short holidays now, how do you want me to imagine myself glob trotting in my old age? And damn in, retirement is now 67? 69? It is no longer 55! I don't hve the luxury of leavin things into future.I am not sure what teh future holds. All I know is I want my life-now! Sorry for being selfish!