At the supermarket- can you pack your bags?

If yes, you lucky fella.

Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.

I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.

The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.

No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.

My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?

Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.

He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.

I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.

What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?

I lost 1 kg!

Nothing to shout about?

For someone with RA, fibro and PCOS, that had been pure hard work (and pain). And I have been trying to do it in such a way which will not trigger my fibro or RA. Previous plans have been foiled whenever too much exercise or too low calories caused RA flares.

GYM=FLARE for me. I have to be very very careful about how much I do, type of activities and the sequence. I have not been able to follow the plan suggested by the trainer. It is simply not workable because my pain and strength at different joints/muscles varies each day! I know myself better, and I have decided to follow my own gym strategy. Don't think they will be happy when they see my records, but well, a woman has to do what a woman got to do! :P

More details of my small weight loss progress here.

And I must honestly admit: I ache all over the place, but the sauna helps. Massage would be fantastic, but it is $$$$

God.. in times of despair?

Perhaps people turn to God in times of despair?

I have been thinking of God, and talking about God, and used the word God, both privately and to myself many times recently.

But which God I am refering to?

I want to smile but could only sigh........

I want to just concentrate on what I CAN do now.. concentrate. Yes, concentrate.

Job offer- jeopardised

After happily telling me she will provide me a reference, and asked my future employer to approach her, she now emailed me the she cannot do so without jeopardizing my job. She asked me to tell her what to write and she "might consider" it. She "has a duty" to tell my future employer " the truth", and "telling the truth will jeopardize my job".

How mean can a person be? I did not need her reference for this job- and I made it explicit. If she was going to give me a reference which will "jeopardize my chance", why did she tell me she will be very happy to provide a reference?? ?

My stand is I will be happy for her to tell the truth, the whole truth, and not partial truth. No matter what her stand is, I am in no position to influence what she says about me in my reference. That is dodgy.

What will you do, if you are in my position? Give me advice!
I have an illness, but I am coping quite well, and I already make concessions about my jobs to make sure I get a job where I am more than able to cope. Most of the time- more than 95% of the time, I can happily work 8 hours a day, or even more! I am already going for easier, lower paid jobs.

Another short gym session Plus massage

I did only about 20 minutes worth of gym.

Couldn't finish the 10 minutes stationary bike. after 5-6 minutes, could see my knees hurt. I can tell you that I am scared of triggering another "full blown" flare. I cannot afford it.
So, I tried to rotate the joints used. I dont think the "trainer" understood what i meant, or he had his own ideas. I dont think i could do what he recommended- it used the same joints, although different muscles. My joints hurt.

So, this is my plan...
Bike: knee, some hips + ankle
Chest press -shoulder, elbow plus some wrist
Abdominal crunch machine - i dont feel any joints screaming! This is becoming my fav. Washboard abs soon???
..... and i tried to ensure i rotate ...

I think it seems to work better this time. Joints are sore, and extremely tired. Could only wake up at 11 am. I was suprised to see a number of missed calls on my mobile. Surely as sign of how fatigued I was. Howevr, this was better than my last gym attempt, no where as sore as before. Perhaps this is a good strategy for my gym? Instead of just focusing on muscles worked-which my trainer is doing, i also need to look at the joints used, and angle used?

Sigh, everyone is telling me to exercise, and make it sound so easy. I was totally pissed off when a "friend"asked me if I knew I should warm up, and I know how to do warm up or not. If I warm up probably, I would not have a problem. It is may be just my lazy excuse.

What makes her think she has the right to be so condescending? She has no idea how fit I was, and how much exercise I did before RA and fibro hit me, and have been saying things which sound like I got all these health problems because I do not exercise. She has been annoying me for sometime-so I had no hesitation telling her off. Tribe cleansing, you may call it.

Two days after another gym session

I spent another 45 minutes in the gym 2 days ago.

Now I see "results" of my workout:

Joints: swollen.
Muscles: sore.

Sigh. Sigh. The body is broken but the soul is not. I will have another gym session tonight! Perhaps all I need is just a little sports massage.

Hurt by peanuts

I love peanuts-In fact I love any type of NUTS!

But nuts are a luxury nowadays-Many types are expensive. Because of the health benefits, nuts are increasingly treated like health food. I eat them because I love it.

However in the recent years, eating nuts could be tough. No, I still have my teeth intact. It is just that my jaw joints would hurt. Yup, that is fibromyalgia plus Rheumatoid Arthritis. Even peanuts could hurt. My jaw joints HURT when I chew them. They feel sore!

I am a HAPPY survivor

Yes I am. Yes I have to be.

No matter what fate is written
No matter what shit or dirt is hurled
No matter what people say
No matter what people do
I know life is about choices
And everyone will have a choice
In the worst of situations
You either smile or cry
You cant prevent death
You cant stop the pain
But you can still decide
To smile or to cry

I decide to add another "column". A column "called inspiration". And I got to start this column with my favourite story: The donkey.

50% of rheumatoid arthritis patients give up work within ten years, says new study

Are you still in employment? How long have you been having RA?

This "headline" certainly spell trouble for RA patients who are looking for a job!
Fifty per cent of rheumatoid arthritis patients give up work within ten years, says new study A new study into the costs associated with rheumatoid arthritis (RA) has shown that many people with the disease are forced to retire early.

Researchers from Sweden published their findings in the European Journal of Health Economics.

The team found that 65 per cent of the costs associated with RA were outside the health care sector and that these included productivity losses, patient out-of-pocket costs and informal care.

The researchers also suggested that around 50 per cent of all people with RA were forced to leave their workplace and either retire or apply for a disability pension within ten years of disease onset.

"Of all the chronic diseases, rheumatoid arthritis has one of the biggest impacts on the quality of life of patients," commented Professor Josef Smolen.

"I am confident that this study will contribute to the discussion on the importance of RA from a societal perspective and not just a health care perspective.

"Patient access to good care and treatment including thorough follow-up examinations and access to innovative drug therapies, where indicated, are critical elements that will benefit all of society."

An Arthritis Research Campaign spokeswoman said: "It is very disappointing that so many RA patients have to give up work within ten years of developing the disease, despite huge advances in treatment. It may be that anti-TNF therapy, given early in the course of disease may help keep people in employment for longer, in future years."


article form ARC website
http://www.arc.org.uk/news/article/18456774

Lack of confidence

At job my interview last week, I was able to "psych" myself up. I was feeling really sick, worried about my joints etc, but I was able to "psych" myself up to be positive and upbeat, between coughs and deafening sneezes. I hardly had good sleep because I was sick, but I went in to the interview feeling that I had a chance and have to fight for it. I did not get the job offer, but I knew I put in my best and have nothing to regret.

Yet today, I am not even putting in my best to prepare for the next job interview tomorrow. Sigh. I have been feeling really tired and warm and in pain since my RA flared up again last week. I tried to lose weight so that I would look more decent at the interview. Instead, I triggered a flare. And more than a week "resting" makes me look more flabby than ever. As usual, another 1 kg of weight gain due to lack of activity.

Despite all the difficult things that have happened recently, I have been trying so hard to maintain an up beat mood. I have not been complaining about how horrible I feel, and what severe blow that is to my confidence. Here I am applying for jobs that require you to be "dynamic" and able to meet "tight deadlines", and here I am, hardly able to get out of bed before 10 am. Here I am tired, by 10 pm. Here I am trying to attend interviews, and trying to make myself look the best I could, despite another kg of flab.

But I guess the "balloon" was really deflated by people around me. Totally able bodied people telling me they cannot do this and cannot that. Totally able bodied, intelligent young people telling they have no hope of doing a long list of things. They have been telling me that they have achieved nothing, and can't achieve anything. Things are too difficult. And they regret A-Z. Life is hopeless.

Frankly, I am sick being the cheerleader. I just want to ask them to scram.

Can't they have some mercy on me? Can't they show me some mercy? Why do they need to behave this way now? Why?When I look at them, I told them"if you have no hope, what do I have??" Or perhaps they wanted to compliment me? They wanted to tell me I actually did many of their so called "the impossibles", while I was sick, tired, in pain and sometimes foggy? Life have not been fair to them? Tell me about it.

I am being totally fed up with all the men around me. Damn it. If they can't distinguish between "can't do it" and "won't do it", get out of my way. And let me use the little energy I have to prepare and do my best for tomorrow's interview. I know I am not in a state where I could do well enough to succeed. Ill prepared and all, but I just want to do my best, no matter how "hopeless" it is. So, stop telling me why the things they do are "hopeless". Stop telling me things which make me feel my efforts are even "more hopeless" than yours. Stop telling me that you can't do a good job because you don't LOVE what you do, and although you do not HATE it, you do not ENJOY it very much. I can tell you that I do not ENJOY going to work. I don't ENJOY getting out of bed early in the morning, sore all over the place, and get into that ICY car, or walk 1/2 mile in my swollen feet to the nearest station. I don't ENJOY walking when my feet are swollen, I don't ENJOY driving with painful ankles. I don't ENJOY spending 10 hours a day typing- that makes my fingers and wrist really painful-my neck and shoulders sore and painful even to light touches (that is the fibromyalgia component, FYI.). I don't ENJOY staring at the screen for a long time, cos my eyes are really dry (That is Sjogren's syndrome), I don't ENJOY long presentations too. If I am the speaker, my dry mouth becomes really uncomfortable, and people wonder why I sip water so much (if water is available). As the listener, I would squirm in my seat, because my joints would "frozen" or let out some cracking sounds. And I also don't ENJOY doing the housework, not when I am already dead tired and in pain after a long day at work.

And yet despite all the shit which is showered on to me, I am just like the little donkey. I shake my head, sigh, take a step and move on. Perhaps that is why I am surviving. I am just a little foggy brained donkey now, unlike all these intelligent people around me. They have a lot more brain cells and energy to complain than I do.

What keeps you awake at night?

As I am preparing for another interview, and struggling with " to tell or not to tell", I also had to prepare for some answers to questions like "why do you want to do this"?

My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.

Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?

How do I describe?

What keeps me awake.

Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.

While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.

While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.

I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.

Will a normal, healthy person understand my "what kept me awake" argument?

To tell or not to tell

Perhaps it is a consolation that every CV I sent out returned an interview.

However, ,I flopped at the spot where I had to account for the "gap". More than 1.5 years away from the workforce. Young professional. How do I account for that? I am bad at telling lies, but if I tell the truth... well. I have had enough of prejudice.

TO tell or not to tell?