Swine flu is not a problem, until it istoo late.

Reading the swine flu reports and the publics comments makes me wonder, are people not worried? It is now phase 5!

There are some brave people wondering what is the panic about - so many people die of flu every year, anyway. Yeah. You might think differently if you healthy 25 year old son die from it. You may feel different once you see healthy healthcare professionals die from it.

Then there are some "intelligent" people out there who are pretty smug, as they live in developed countries. A few days ago, the went along the line that only Mexicans in Mexico die from swine flu, probably implying that Mexico is less capable of dealing with the flu cases? Then when the toddler dies in Texas, there was a few hours of quietness, before they discovered this child was a Mexican. Then they happily hum along the line that it is still only Mexicans that died of swine flu. Good grief. Have these people not thought of something called proprotions? Not everyone will die of the flu. If it is, then it is not so infectious! Some will recover and a portion will die. So far, the scary part is those who die are young healthy adults, as in SARS. We have not seen deaths in other countries because there are not many people who are infected yet. And so far, those people who were infected still have traceble, obvious risk factor - travel to Mexico, or direct contact to one of the few people who are confirmed cases. As the virus spread within a community, it will be less obvious who are the ones with just a flu and who is having swine flu. That makes detection a lot more challenging, and the spread much more likely.

And the best reassurance comes from people who noted that some people with swine flu just experience the symptoms of a typical flu. Good news? Yes and No. Yes because it means many people may be infected but will recover fully. No, because you will have these people walking around and infecting others who may have a more severe course of illness.

Perhaps it is just human nature. It is so easy to dismiss a problem when it does not happen to you. If you cannot see it or experience it yet, you cannot see how it can be a problem. It is when people experience it themselves, they feel the pain. Hmm sounds familiar. Isnt that a typical response to fatigue CFS sufferers have to endure? How many people will tell you that for goodness sake, everyone is tired. Pain of RA? I had friends competing with me about their level of pain when they sprained an ankle, or had injuries.

Is emphathy such a difficult skill to learn? I hope people see the swine flu outbreak seriously enough. Frankly, if this become a world wide pandemic, make sure that countries like US and UK who had been so "positive" and calm gets their deserved places in history.

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.

down with flu

feel like rubbish. Aching all over. Thankfully, RA did not FLARE up

my sister calls it "swine flu".. ie I am the swine. Not funny.

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!!!

Good luck, Woman. Hope he gets well soon

My best friend, who I call "Woman" just told me some bad news. Her husband has reactive arthritis, since a few months ago. The symptoms started not long after a flu jab, and he has been getting flares since.

A myriad of thoughts and feeling went through my mind, and I just wish to hug Woman tightly, and tell her, "It is alright. You will manage".

Woman is a strong woman. She dealt with many things in her life.  She is a fighter, no matter how heart broken she gets. She was the one who, as a medical student, went through my initial symptoms with me and told me I was right. I had disagreed with the doctor's diagnosis then, but was not sure if I was right. Afterall, I was still a student, unqualified yet. I was angry that my complains of swelling were ignored, and basically "shoo-ed" away. I was treated as if I was making things up. Woman told me she agreed with my own diganosis. Migrating polyarthritis. My age. Sudden onset. My fatigue. All the signs and symptoms of something nasty. 

Now Woman has to go through the process. This time, the patient is her husband. She had seen her cheerful and energetic friend became quiet and tired at all times, always in pain. Now her husband goes through the same process. When we last spoke, he valiantly tried to sleep through a bad flare. This time she understands more than she did with me, but i still have to remind her that RA saps your energy. You don't even have time/energy to feel depressed, unless an event set it off. He needs all the understanding and love a of a wonderful wife to go through this tough stage.

No goodbyes.

Winter was peaceful. Everything is well. 

Just as things seemed to get better, I started to get excruciating pain again this afternoon. Stress. 

Things will get better, but I must persevere. 

The cost of a bath...

Or rather, the extra cost of taking a hot bath..

I need to turn on my boiler for another 1 hour. That equals to 3 units of electricity!

Gosh! what a luxury...

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. 

Pay people who are ill to stay at home please, would you?

At home today... with an stomach flattening cough, sticky sputum and a nose that can put Rudolf to shame. 

The URTI  infection had triggered my RA and fibro symptoms. I am sore all over the place.  My right wrist is swollen. Last night, my thumb and index finger was numb, and weak, ie pretty useless. thank goodness my left hand is still doing fine. so, dinner was prepared with my left hand, so is this post. 

Did I mentioned about taking care, not to get sick?

Yes I did.  And I took some pretty extreme measures.

•  i kept myself warm.
  
• I avoid the peak hour bus/train. I have resorted to taking an earlier bus, and a later train so that I can avoid crowded carriages. 
  
• I have been religious in my rest time.
  
• I ate healthity.
  

And so far it worked. Until a colleague fell sick. 

The poor girl is new and had not passed her probation. Some intelligent person devised the rule that you dont get paid if you take sick leave while on probation. So this girl braved the commute and cold, came to the office every day despite being really sick. On some days she  just tried to stay awake. She was just too busy blowing her nose and coughing to really do anything.  We have tried to persuade her to rest at home, but once she said, "who is going to pay me if I stay at home?" , we all kept quiet. With Christmas around the corner and the economy in shatters, who would want to have less pay? Worse still, we all understand how anxious she must be in passing her probation

She had been sick for a more than one week. Within a week of her illness, the colleague sitting next to her fell ill, and he had to take 2 days off.  Then the colleague next to him fell sick.. and the domino effect passed on. Almost 2 weeks later, it reached me.  Last week, she finaly took sick leave, because her probation period is just over!!! By this time, everyone who sat near her or had frequent work contact with her had already taken at least 2-3 days off.  

I wonder who came out with the idea of not paying people who are sick to stay at home. False economy!

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? 

Slow cooker meal : Caribean Chicken

Caribbean Chicken

3 tbsp veg oil
2 large onions, chopped
4 sticks celery, chopped
3 carrots, sliced
500g mushrooms, sliced
2 red peppers, sliced
8 chicken joints, skinned
400g can sliced peaches
400g can pineapple chunks
10 tbsp cornflour
3 tsp paprika
3 tbsp soy sauce
3 tbsp worcestershire sauce
8 tbsp malt/wine vinegar
1 litre boiling water
salt & pepper

Fry onions, celery, carrot, mushroom and pepper in a pan.

Add chicken joints and fry until browned all over.

Drain peaches and pineapple, reserving juice, and add to pan.

To make sauce blend cornflour and paprika with soy sauce, worcestershire sauce, vinegar and reserved juice, add seasoning, boiling water and pour into pan.

Bring sauce to boil, stirring continuously.

Transfer all ingredients to slow-cooker, cover and cook 5-7 hours.

Autumn food - curry

Kicked off the autumn winter food yesterday with curry!!

I was really tired yesterday, and don't even feel like doing my simple (cheat's) curry.  

I decided to make something that is more easy that the simple curry - testing out cooking curry in my slow cooker!

I tried a brand new recipe - with lots of lentils. Food price is going up, honey. At the rate this is going, some adjustments need to be made in terms of food!

These were the  ingredients for a healthy SLOW cooker chicken curry:

1. 3 teaspoonful of curry paste (I prefer the Thai version)   £ 0.30? from a big packet which cost around £2.5
   
2. 3 table spoons of curry power for chicken (negligible cost! - £0.10-0.20)
   
3. about 6 drumsticks (or 1 chicken, whichever is cheaper) £1.60 - supermarket's own brand
4. 6-7 small potatoes (used new potatoes, so that I did not have to peel) - cut them into quarters - 1/3 of a 1 kg pack  which I bought for 50p -£ 0.20?
5. 3 onions - cut into 8 pieces - £0.20
6. 300g of dried split yellow peas (this is really really cheap, and a good source of protein. Howver, it might make you more "gassy" - soak in water first if you have the time!) -£0.40
7. 1 can of chopped tomatoes (because this is cheaper than the fresh ones!) £0.16
8. 1/2 teaspoon of salt

[Total cost; a maximum of £3.00, I overestimated the cost of the ingredients like split yellow peas etc. I bought a 1 kg packet for probably around 60p when on offer]

Methods? 

1. Dump everything into slow cooker.
   
2. Add enough water to cover ingredients.
   
3. Cook on low heat for about 6 hours.
   

Taste?

great! Although it is much less oily. 

You could use a preset timer, or cook just before you sleep. 

Advantage?

1. Using cheap electricity at night!
2. No sweat at all!
3. Healthy! This method means no oil for coconut cream, or even milk! Also no oil used to fry the paste.
   
4. Kitchen, or wherever you left the pot, would be warm! (Save on heating)
5. Lentils = cheap protein
6. Could add more tumeric power - anti - inflammatory!
7. Could add winter vege like curry and pumpkin.

Disadvantages!

1. The curry smell could be pungent! Make sure you leave the pot in kitchen if you do not like it!

Serve with bread or rice!  This pot of curry lasts for at least 3 meals for 2 persons!

Check out other curry recipes on the web!

Keeping warm - while at home

Here are some tried and tested way to keep myself warm while at home. 

Keeping the whole house warm is going to cost most that just keeping one or two rooms warm, we all know that.  So, one of the key things that I do is decide where I want to be most of the time, and keep that room warm and toasty.  

In my first winter as a fibromite, I noticed that it did not take too much effort from my small kitchen warm. I guess it is because of all the cooking - making stews, using the oven and boiling water. However, the kitchen was not the most comfortable place to stay for a whole day!

 Therefore, I made these simple changes which helped me to stay warm and not burst the heating bills: 

1. Bought a slow Cooker , made soups/stews (and also roasts!) in the living room. It made a difference to my small living room. Days with slow cooker around need less "boost" for my storage heaters. The photo in the link is how my slow cooker looked like. You might get it cheaper from a local store!
   
2. Boil water in the living room! I brought my kettle into my living room, and make coffee and tea from a small table! Cozy! The warmth from a hot kettle of water helps!
   
3. Keep feet warm. This made a lot of difference. I prefer to wear those fleecy socks. Allow my feet total freedom - important for an arthritic patient
4. Fleece blanket/throws. I put a throw over my shoulder/on my laps when I am sitting down to read etc. I guess it is an old trick which everyone knows.
5. Yoga Mat - good insulator for non-carpeted floor, and the perfect place to stretch!
6. To get those cold feet warm-- dance!!! Put on some nice CDs, DVDs and get moving! It is easy to forget moving. No matter how tired, painful, put on some nice, groovy entertainig stuff and just move! - even if it is only for a minute.
7. The hot towels always worked. particularly useful when you just come in from outside, or when there are sore muscles. I have describedy this before.
8. Windows, doors - draught excluders etc. There are plenty of these advice about keeping your house warm, and it is useful to check and see what could be implemented.

 these two are ultimate partners

Keeping warm in winter- handy tips

Keeping warm in winter is essential. Big temperature changes do seem to cause my arthritis and fibro to flare up.

However, keeping the heating bill down is a challenge. Therefore, I am trying to come up with ways to keep warm this winter!

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. 

Back from back packing!

Yes, I survived the trip, and lived to tell the tale!!

RA patient back packing - woahhhh

Fibromite back packing - this is a small personal victory for me!

I managed to survive with only a 20L back packing for a 10 day trip. My bag weighted about 7 kg, on the days I did not wear my jeans and had damp clothing. Otherwise, it was less than that. Not bad right? Take into account that the places I visited ranged from 25C to 5C! I must tell you that I mastered the art of layering. The art of choosing what clothes to bring, and keeping warm and cozy with a minimal weight of luggage is worth a post itself!

Some days were quite challenging, to be honest. I noticed swellings after a few days of wurst. Red meat spells trouble for me, but at some places, the cheapest, most convenient food (not to mention "safe" ie hot and low chances of contamination!) available is simply wurst or hot dogs, sausages and their cousins. On other occasions, the local food is simply very porky or beefy! This proved to be difficult for me and I ended up eating lots of bread. 

My schedule was planned with discipline. You might argue that that it takes some fun out of backpacking, but I would argue that the challenge makes my trip more fun. 

Any problems? Yes! I had my period. Yucks. Lots of cramps. I felt faint at one point, and so tired that I noticed I fibrofog striked! I simply had to tell my sister that my mind had switched off and she had to read the maps! 

Traveling!

This will be my first real travel in 6 years and my second attempt to back pack after my rheumatoid arthritis started. This would be the first trip since my fibromyalgia began.

I look forward to the trip with both excitement and worry. Excited, because I will be back packing with my sister, and yet at the same time, I worry about a relapse. Without hubby around, there will be no one to help me carry my bags!

A lot of planning had been put in, so that I alternate hectic and "train" times. Hopefully, those train rides would provide a rest day.

Since a few days ago, my palms have also swollen up and this made work really difficult. Typing and using the mouse had been really uncomfortable and sore. The sad news is I seemed to have put back all the weight I lost in the past month or so. I had been having hunger attacks with will popping those NSAID pills like candies. I hope everything turn up right for the trip

Stiff fingers

My MCP and PIP of my right hand ( and now my left too!) were swollen painful and stiff as soon as hubby went away for a few days for a meeting.

I have left home without a warm breakfast these two chilling mornings. Soaking in hot water seems to help, but I am no where good enough to handle a kettle.

Soldier on. To my colleagues, I am normal. Thank goodness I have always made it a point to be slightly ahead in my work and now I hope no one notices I have to slack a bit these two days.

If the patients say it is good....

.. it is good!?

It is interesting how the BMJ article on Alexander technique generated so much discussions both on the internet from medical communities and at work.

There are the people who call it another crappy research, and another demanding that it needs to be proven scientifically. Does the current science knowledge base knows everything there is to know? Can't people have a little humility and accept they may not know all yet?

While this study is not perfect and not the final proof that Alexander technique may be beneficial for patients with back pain, it is a small step forward. I find it really a case of double standard when criticisms such as lack of double blinding came into play. How many surgical procedure studies have been conducted as double blinded studies? It is not a case of being lax with evidence based standards of complementary medicine, it is a case of comparing the evidence standards for interventions of different nature and make a sensible judgment out of it.

Declaration of interest: A rheumatoid arthritis and fibromyalgia patient who had benefited from Alexander technique.