I had this comment for my post about keeping warm while at home.

"I can't believe you. You are very lucky to be able to do what you can. Some of us fibromites as you call us do not have the luxury of not working. I get my self out of bed every weekday and go to work no matter what pain level or fibrofog level. If I didn't work, I wouldn't have a home, healthcare, or food. If you are going to hurt lying around the house in your toasty socks under a lapquilt, why don't you experience the same pain at a job. My job is very taxing for anyone with fibro, I teach full day Kindergarten in public school in a very low economic area. Get over yourself. The rest of us are just a bad, if not worse."

Can someone pls explain to me what "get over yourself" means, in this context?  I can't quite understand what Martha wanted to say. 

Did she say I whine too much? I am sure I do - whine a lot. Where else can I whine if not on this blog? This is where I do my whining and crying.

While I do admire Martha's strength to work through all fogs and pain, I would not expect it from everyone. I am not sure what people mean by "fogs". The worst period for me was when I crossed roads and almost hit by car, just couldn't remember to turn the stove off, and could not copy down a series of 6-8 numbers (ie bank account) from one page to another. Walk to work? There were times I walked to the nearby store to get a carton of milk but forgot halfway why I was there, and where I was supposed to walk to. 

I dont believe that you CAN work because you NEED to work. I had been there. When you really can't it means you really can't. Insisting in doing so only put yourself in danger, and you may endanger others too. But I do believe, given the right treatment

Thanks for leaving comments in this blog, and I always look forward to receive your comments, especially if it is someone with fibromyalgia, or living with other chronic conditions.  However, some comments do puzzle me, and cause me to read it over and over again - what are they trying to say? Or perhaps should I suspect that they did not really read by blog? 

Obama for health care? This is what a rheumatoid arthritis patient thinks!

There are many analysis of the pro and cons of the Obama vs McCain healthcare plans, and there is no need for me to even bother to analyse them. Lots of analysis that is pro-Obama and pro McCain

But how about from the perspective of someone who had a chronic, recurrent illness?

How is it like for us?

McCain's plan is no good fo us -people with pre-existing illnesses! No good for people who have recurrent and remitting illnesses. For people like us,  holding down a job is not a permanent feature we can choose to have, it is a priviledge whenever our condition improves or in a remission!

Why do we need a healthcare plan in the first place? It is to provide a safety net when we fall ill. It is not for those times when pa and ma, are both bringing in a decent wage, and all the kids are happy and healthy. The situation now is when you really NEED health coverage, you are not qualified for it, or you cannot afford it anymore.

 

I almost fell in love with him when he said that health care is a right. I knew that he knows what he is talking about when the talked about his mum haggling over insurance bills and rights on her death bed, while fighting for her life. 

Mc Cain? Give a tax credit? USD5000? Shop your own plans? Giving you choice? Well, that is all great for the educated people with a decent earning. How about those people who are not working? How about those people who are not able to have a full time, permanent job? How about those who already have health problems? Where do you want us to go, Senator McCain? 

I know that by choosing Obama, we are offered a safety net. When ill, we know that we will not completely drop out of the system. We can focus on doing our best to lead a normal life. We want to be well and working. We need a system which allow people to get the health care needed in the most difficult times, and could get back on our feet as soon as possible. Working, leading a normal, purposeful life. 

Vote for Obama? You bet. Let no one drop behind. 

New study on alexander technique for back pain - BMJ report

What is already known on this topic

Combined manipulation and physiotherapy-supervised strengthening exercises helps functioning moderately (1-2 activities no longer limited by back pain)

Preliminary evidence suggests that massage and lessons in the Alexander technique might help in the short term

What this study adds

Six sessions of massage, prescription for exercise and nurse counselling, six lessons in the Alexander technique, and 24 lessons helped with back pain and functioning at three months

Lessons in the Alexander technique still had a beneficial effect on pain and functioning after 12 months

Six lessons in the Alexander technique followed by exercise prescription are nearly as effective as 24 lessons

Link:http://www.bmj.com/cgi/content/full/337/aug19_2/a884

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?

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.

Living with fibromyalgia-the documentary film

Living with Fibromyalgia

Has anyone seen this yet?? I am thinking of watching this film, but it cost $19.95 (USD) to order the DVD! It is a little to expensive for me, in this state. I have barely got my feet on the ground again, and still clearing all those debts.

Please think of a way to get your national TV to screen it, that is how the impact of this film will be maximised.

Watch this space.... I will try to find some info about how to pester stations haha. Now that I feel better, I will expand my energy on this!

18th Dec 2006

I have written to the UK fribromyalgia association, wondering whether they are planning to screen this film. Apparently, they have not heard of it, and dont think people in the UK will be interested because it came from the USA. Is that so??