Falling behind.. the quiet resentment

Being off sick is an unfortunate excuse to check out facebook and catch up with friends a little on msn while having my lunch.

It is both fun, and also depressing. Without catching up with school friends, I am perfectly happy in my own world, proud of my small progress from being in bed most of the time to working slowly back to a full time job, and fit enough for my 10km walks.

However, all these little proud moments about how far I have come evaporates whenever I catch up with friends. It is inevitable that they would update me about where they are and what they are doing, telling about their kids and their job. Then, they would ask me where I am, what I do and how many children I have.

The answers are not fun to give, especially when I see how far they have moved on. Sometimes, my answers produced some awkward moments. I have a humble position, while others are in senior positions. I have no kids, and no properties.

I constantly worry about my health, and the fragility of my finances. I have a condition which may worsen at any time, and yet i dont have any decent amount of savings. It is a threat of having nothing to fall back on, if my condition ever worsen again. The threat of being a burden to my family. As much as I wish to have a child, there is the reality that if I have a child now and fall sick again, it will be a major issue. There will be no money to maintain the day to day living expenses, let alone getting help with childcare. I wont want to have any children, unless I am financially able to support them, and not depend on them. I had to support my family since a very young age, spending all my holidays earning, earning and earning for them. Until now, the moment I have a little bit of extra, it goes to them. They have a constant need for more money.

I am lying to myself if I say I have never resented this. The truth is I resent it. I resent that I am not capable of earning more, so that there is something left for myself. I resent that my parents always think that I can magically produce some money.

I resent that my husband take such a laid back attitude about work. I resent it whenever he spends hours watching television or surfing the internet, and not doing something more worthwhile, something that could translate to better jobs opportunities and financial security for us. I totally resent it when I try so hard, despite being so tired all the time, while he sits back and be contented with his lot. He does not have the initiative nor the drive to be successful. I wonder where that has gone. In fact, the moment my health gets better and I could start earning again, he becomes even more laid back. I totally resent it, and I resent it even more because I know he is in a better position to resent my situation. I am a burden to him.

These resentments, although I have never mouthed it or said it to anyone, is deafeningly loud. I resent my lot in life. I always thought good people will come to good end. People who work hard will get to have a better life. And yet, I worked damn hard all my life. What do I have in return? Sometimes, I just wish to hide in a cave and never come out again. It is do depressing.

Wow, I am walking so much!

In my valiant attempt to loose weight and increase energy level, i decided to walk more. In fact, I walked a lot. Last week, I walked at least 25 km, and I am just counting those "long distance" walks I did, not those "usual activities" walk. On two days, I walked for 2 hours per day in the evening, covering 10 km each time.

My body is still holding up, but I suspect I was overdoing it a bit. I am so tired by the weekend. I had a nice long massage yesterday, to to get rid of some knots and tackle some of the trigger points which I noticed developing. Although I slept through the whole of today, I am still feeling really tired. This week, I will really have to reduce my walks and rest a lot. I am beginning to see some of the symptoms of my fibro. Aches and fatigue.

This whole episode reminded me of a recommendations for CFS/ME patients to do GETs and CBT and the protests from patients. Stop psychologising everything!!!

Fibroaction UK

I have added the link to a new patient support group for fibromyalgia based in UK: http://www.fibroaction.org/Default.aspx

The support group was founded by Linsay Middlemiss, who had been blogging for years.  This is my favourite website so far for fibro support - it has such a positive vibe there! Plenty of information and actions to raise fibro awareness! 

Check out their events section too. 

Winter 2008 for a fibromite and RA patient

Winter is coming! 

I try my best to sound cheerful about this. In reality, I know that this is going to be a tough winter for most of us. Fuel poverty is going to be a problem for many. Keeping warm. Keeping warm in the face of electricity and gas bill increase. 

As for myself, I am faced with a 50% price hike. If it had cost me$100 per month in winter last year, it will be $150 this year. Factor in the increase in food prices and no increase in income, it will be a tough one. I know I am still fortunate. The economic crisis had hit my family, but one of us is still working now - me. I know this is a pretty unreliable source of income. I just need a bad flare, and that is it!

Ahhh, haven't you heard that opportunities come to those who are prepared for it? Let me rephrase it and say that "Full blown crisis will (hopefully) avoid the well prepared"?

I need to:

1. secure my income! - ie dun get it flare!
   
2. cut my expenses, or at least not let it soar.
   
3. get extra income
   

I need to keep warm, rest enough, and yet not fall sick and have the energy to get extra income. 

Tough, but i have been through worst times! Just look at my 2005 postings!  No reason not to keep my chin up.

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. 

Sardine curry: Very simple and cheap curry recipe

This is what I cooked for lunch. It is a perfect flare day food.

Curry and sardine is a delicious combination and provide two great ingredients for RA patients like me. It is particularly useful when I have a flare, and too tired to cook.

Here is another recipe of cheat's curry - sardine curry

Here is what you need:
1 table spoon of tom yam/ Thai curry paste (see my chicken curry page for photo)
1 can of sardine (or mackerel). It is alright to use whether in brine, sunflower oil or tomato sauce. Personally I prefer in brine/sunflower oil.
Milk - about 50 ml- 100 ml, depending on whether you want it dry or hot
1 small onion-sliced into rings, or diced (optional)

Methods:

1. Heat a small non-stick pan, turn to medium heat.
2. Add a few drops of oil- i normally use the sunflower oil from the canned fish
3. Brown onion, until it is soft.
4. Scoop in 1 tsp of curry paste, fry it for 2-3 minutes, until fragrant
5. Add fish. Fry for less than a minute. Mash it with fork/spatula.
6. Add milk.
7. Bring it to boil.

How to eat

• With BREAD: If dry, (use less milk), this will be a good consistency as a sandwich filler. Add a few slices of cucumber if you like.
  
• with rice or pasta: If more wet, it will be perfect as a pasta sauce. Can also scoop this over a plate of rice and serve with a few pieced of cucumber. Perfect.

Time taken: Less than 5 minutes if no onions are used.
Cost: REALLY really cheap!!! A can of supermarket brand sardine is probably the cheapest item in the kitchen cupboard.
Nutrition: High in omega-3 (anti-inflammatory), and contains lots of turmeric. Perfect food for those RA flares.
Challenge:Cutting and peeling the onion. Opening the can of sardine.

RA/fibro tips: I like to use it as a sandwich filler, with sliced bread. I cook more and eat this over two or three meals. Keep in fridge and reheat before eating. 1 can of sardine fills about 3 sandwiches nicely.

Down time

After more than 1 month of this continuous low level flare, my body finally can't take it anymore. I woke up this morning, felling much more stiff, sore and tired than in the past few weeks. I am also coming down with some throat infection. I know this is my body telling me - you to rest.

The warning signs are all there. I won't want to trigger a big one!

So today, i rest at home. Slept. Totally bored. Uncomfortable. I don't have real rest when I am sore all over. Sigh.

I hope I am well soon.

Fog, fog stay away

Just half an hour ago, I found myself analysing a scientific paper, and developing a structured argument and commentary about it.

It is so late at night, I am awfully tired after a long day, but still, my brain worked! I am a scientist. Yes, I am a scientist. This should be normal??

Yes, and No!

I had this sudden sense of "Hallelujah", "thank God", "Amitaba" "Insya Allah". Awww.. I just wished to say thank goodness/Thank God in all the manners available to the major religions on earth. That is how grateful I am.

I suddenly realised that although I have not been that well these few weeks, and fatigue is affecting my concentration, my brains are still still working! My fingers are swollen (enough to get my physiotherapist who saw me today really concerned and strongly suggested I get a proper occupational evaluation and told me my legal entitlements).

Compare my life now to the days when I faught fibro fogs daily- this is still heaven despite the pain and fatigue. Fibro fogs is the most difficult part of fibromyalgia! That is true, at least for me!

If you are some foggy brain stumbling onto my blog, do not ever give up. There is hope at the end of the tunnel. Or should I say, the sun will shine and drive the fogs away one day?

.. and ahem.. can it say it again? "I am amazing"!!

New fibro support forum (UK)

There is a new fibromyalgia support forum for UK.

http://www.fibro.org.uk/

Hope this forum flies. Good luck. UK patients will need all the info/help in getting help from the NHS system, and understanding their rights.

Research- Fatigue(felt) related to heart functioning!

A new research published in the very respectable annals of internal Medicine showed that fatigue is related to cardiac functioning yesterday.

Basically, it showed that the amount of blood pumped out by the heart is lower among individuals with high reported fatigue, both at rest and in response to stress compared to low or moderate fatigue people.

The authors concluded:

"This study demonstrates that fatigue complaints may have hemodynamic correlates even in ostensibly healthy individuals".

Those were just nice and intellectual sounding stuff which means:

"There is some sort of link between the heart and blood dynamics in people who said they are fatigued! It is not all in the mind!"

I cant blame any ME, CFS or RA patients who have deal with fatigue almost on a daily basis feeling vindicated. I did!

Exercise made 1/3 of Chronic Fatigue Syndrome patients feel worse..

Saw the report about exercises prescribed for CFS patients made 1/3 of them felt worse, and resulted in some of them to be bed bound for the next couple of days.

I certainly feel a lot worse after a "good work out". The kind of fatigue and soreness, the flares in my joints I experience is not just plain after excercise sort of tiredness. I make no mistake about that. The jury is still really out there about how much is too much and how much is enough. Until then, we just got to listen to out body and get up and do as much as we possibly could. Exercises and activities, is definitely a good thing, but the amount required is really depending on the individual. That stays, until some solid research have came out we good data.

At the same time, some researchers had worked out that people who complained of high "fatigue" has hemodynamic differences compared to those arent (when they looked into the blood flow and pressure)

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.

How frequently do I blog?

Rarely.

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.

scared.......

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.

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.

http://www.bbc.co.uk/iplayer/

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!

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!

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?