Friday, November 20, 2009

My weather predicting bones...

agrees with the weather prediction man.

I am aching all over!!

Saturday day weather

Heavy Rain
  • Heavy Rain
  • Max: 15°C 59°F
  • Sunrise: 07:29

Sunday day weather

Heavy Rain
  • Heavy Rain
  • Max: 12°C 54°F
  • Sunrise: 07:31

Monday day weather

Grey Cloud
  • Grey Cloud
  • Max: 14°C 57°F
  • Sunrise: 07:32

Tuesday day weather

White Cloud
  • White Cloud
  • Max: 16°C 61°F
  • Sunrise: 07:34

Monday, October 26, 2009

Swine flu or H1N1 virus - does it affect people with arthritis more?

I have been keeping an eye about the latest developments of swine flu and checking the websites. The information on the Arthritis Care website is rather generic, I would say, compared to the information in Arthritis Foundation website which provided H1N1 information that is more specific to arthritis patients.
 Many of us would probably be on some immunosupressants which puts us on an increased risk for developing complications, and I hope these patients get the extra attention and immunisation required. 


Fortunately, I do not require any immunosuppressants for my RA. However, I am no stranger to the impact of infections on my symptoms. I have this joke that the H1N1 will not kill me, but the flare triggered for my RA would probably do it. Two months ago, ie end of August, I had a simple cold. Since then, I have been having morning stiffness and other fibromyalgia like symptoms on and off. I have been feeling very tired for these past two months and only begin to feel much better in the past week or so. That was just a simple cold which lingered for a while because I was so tired then. Imagine what a full blown flu would do! I have plenty of experience and know the effect all too well and really dread that.

What can I do not? I got myself - paid or it- the seasonal flu jab as soon as it was available, and I take extreme care of hygiene, especially hand hygiene to reduce the risk of flu transmission. I also avoided peak hours in packed trains and had opted for the buses (always looking out for those precious seats!) even though that meant longer journey times for me. I also keep warm! Hopefully the flu and cold viruses will have mercy and spare me!

Friday, October 23, 2009

Cheap heater fans are perhaps not that great - "to invest" in better ones

The cheap heater fan I bought in the high street store for next to nothing was really noisy. I was really afraid that it would explode or something! In the end, I decided to send it back to the shop.

Since the heater fan was really a good idea (practical and economical heating!), I did not intend to give it up. I decided to invest in something better. Surprise, surprise.. Amazon and Ebay still produced the cheapest options when I searched online. However, I was a little sceptical about getting a second hand or refurnished item. You never know with these things.

At the end, I settled on this little beauty on the left (after careful consideration of the purse factor).... 





I had seen the raves on this model in a few website. I wanted one with a thermostat which have a safety net and will auto shut off (really important if you have fatigue or fibro!!!). 

The model on the right was really tempting- it not only allows you to preset the temperature you want, it also comes with a remote control - imagine how useful this is in a chilly morning: stay in your bed, turn it on, and get warm! There is also a Dimplex model which I think is very good value for money, but I am not too sure about its shape/size: I am not too keen to drag something big around with these creaky bones. It will be great for those people who can buy one for each room/really macho & muscular.

With all these homework done on keeping warm, I am keeping fingers crossed that it will be all warm and cosy without a utility bill that kills me by the end of the month. I want to KEEP WARM, not becoming BROKE!

18/04/12 update: 3 winters later, our Delonghi fan heater is still going strong, and is probably the most cost-effective electrical appliance we every bought. 


Wednesday, October 21, 2009

Fan heater - it is actually economical!

I got a little fan heater :) It is just a tiny gadget and it consumes 2.4kW. 





Now that the weather is not that cold yet, I just need to turn it on for about 5 minutes every morning when I wake up and change to get to work. It is another 5 minutes when I get home so that it is all warm and toasty when I change. Because it is portable, and I literally "POINT n BLOW" to warm up a section at home. 

And I learned a wonderful trick too.Nothing great, just basic science:
Warm air goes up, and duvets trap heat pretty well.
I put the heater quite near by bed. Just before going to bed, I pointed the heater to the direction of my bed, turned it on, and lifted the duvet up. In a few minutes, a nice warm of layer air would be trapped trapped between the duvet and my bed. My duvet is 13.5 tog, and that was usually enough to keep me nice and warm. In late autumn and early spring, that was what I need. 


The weather is already quite chilly, but not really cold yet. By this time, I usually would have turned on my central heating. However, I found that all I need was about  20 minutes of that fan. Is that economical?
Lets check the cost!


 2.4 x (20/60)hour x unit price =0.8 x cost/unit of electricity for one day of heating.


The cost of day time electricity for my tariff was 17.5 pence/unit.


Therefore, if I use the fan for 20 minutes a day, the cost is 0.8 x17.5 p =14pence per day.
In one month, it would cost me around £3.50.


The cost would go up to £5.20 per month if I use it for 30 minutes per day.


Therefore, despite the bad reputation of fan heaters, it is actually cost saving if you consider that you can use the other sources of heating less or delay turn on your central heating!


p/s: Invest just a little bit more to get a decent heater fan. We found out later that the cheapest product on the high street was a disappointment. 


Tuesday, October 20, 2009

Winter heating - storage heaters are not that economical at all!

Storage heaters are false economical solutions - I think.

Although they use the "off peak" night time electricity to charge up (at about half the day time rate), it is still seven hours of electricity consumption per day. To make things worse, they make the room too warm in the early morning - when they are warm enough and start discharging the heat, but the room would not be warm enough in the evenings. As these oldies do not come with a timer, trying to adjust them means really poor quality of sleep for us. Imagine how well you can sleep if at the back of your mind, there is a little voice which says "wake up to turn off heater, otherwise the bills will give you a heart attack".

I just went to check my model and realised that it consumes 2.5kW. Since it is auto on for 7 hours, I use 17.5kWh per day or 17.5 units per day! I checked my unit price and multiplied that by 17.5 for the cost of 1 heater per day.



At 17.5*30*unit price = the price per heater per month. 
That just happens to be equivalent to 2 weeks of groceries money for me and hubby! 


I have two such units, one for the bedroom and one for the living. That is great isn't it. Turn on the both of them and we can succeed in our dieting goal. And ohh, did I mention that I have two smaller heaters for the bathroom and the hall? They just consume a measly 0.9kW each. 0.9*2*30*unit price = £15 - almost what i spend on fuel for my tiny car to get me to the supermarket per month.  I almost forgot about that boiler which takes care of my hot water supply!


Having worked those out yesterday afternoon, I went to the nearest electrical shop and bought a cheap heater fan.. I think that wonderful heater fan which cost me about £3-5 per month to run deserves its own post!



Monday, October 19, 2009

Signs that you are not keeping warm enough?

When winter comes, keeping warm is a decision - do you want to spend that money to keep warm?

Like many people, we try not to turn on the heating until November.  Turning on the heating "on demand" would result in sky high bills. I have been putting on layers since the beginning of October, and going to bed early, before I really feel the chill.

Perhaps that is a bad idea. I am now beginning to recognise the symptoms of not keeping warm enough. These are so similar to my fibromyalgia and rheumatoid arthritris symptoms, that to be honest, it is difficult to distinguish.

These are the signs that I have not been keeping warm enough, I think:
  • Stiff shoulders - stiff neck. 
  • Headache related to the stiff shoulders and neck
  • Upper back (shoulder areas) cold to touch
  • Generalised stiffness, especially in the mornings. My elbow frequently gets out of my duvet when I sleep and that is the joint that takes the brunt of the cold.
  • Generalised tiredness from all those stiffness
  • Symptoms not improved by the usual medications/massage that help with stiffness
Keeping the whole room warm is really too expensive for us. I suspect that the "economical" storage heaters that we have in our old, rented flats that not that economical after all. Perhaps I should find a cheaper way to keep warm...

Tuesday, October 13, 2009

Autumn...

It is that time of the year again. The colours begin to change, and Mother Earth is preparing itself for a long good rest.And it is also the time for me to ask that question again " How do I manage my arthritis in the winter?" "How do I prevent my fibromyalgia from worsening in the winter"?

I have a strange love for winter. I love its quietness, I love the opportunity for a rest. No one bothers you about whether you are going on a holiday or "what do you do this weekend?". I dread those questions, to be honest, especially whenever I was dead tired. Do I tell them, " I sleep through the weekend. I had no energy for anything"?

But autumns bring those cool chilly mornings - a reminder that it is going to get colder in the following months and where the stiffness of my joints become more apparent in the mornings. It is a struggle to go to work some days.

These are the days that I need to prepare myself.  How do I keep warm? How do I keep well?

I am so glad that I have been keeping this blog. As I seldom post, I have been tempted many times to delete it. However,  I found my old posts so useful to check out which strategies worked for me, and I am glad that these are now becoming tips that I share with my friends - "how do you take care of your arthritis in the winter"?

Tuesday, May 26, 2009

Sibutramine-maybe it is good to stay away if you have fibro

This is purely my personal experience - not a medical advice

I found some sibutramine capsules while cleaning up. They are still good, unexpired and I have been working hard to lose weight. So, I thought why not restart these weight loss pills.

The effects were obvious - I felt less hungry. However, the suspected side-effect which prompted me to stop it more than a year ago was prominent. 

I stopped it because I suspected sibutramine made my fibromyalgia and arthritis worse. It SEEMed to interfere with my ability to fall asleep at night. This was dismissedby doctor as probably psychological - I knew I had sibutramine, and therefore I had problems sleeping well. 

However, last night was so obvious. I was so physically and mentally tired, that i thought i would fall asleep before counting to ten. Nope. I stayed awake until 4am for no good reasons. I only realised the following morning that it was the third day I took sibutramine. 

This was consistent with my previous experience with this weight loss pill. One day is fine. Two days makes me less easy to fall asleep. Three days kept me awake!!! Today, I had a flare!


Is it just a coincidence - again? I think I have to say no thanks to this really effective weight loss pills. They are no good for me

Wednesday, May 20, 2009

Calm and happy = happy joints!

There is no mistake in the title.

I am just reinforcing the message -- to myself. It is funny when I would advise others about staying calm and happy , when my own life had been filled with some sort of heaviness. I have not really smiled or laughed for more than 3 weeks, apart from the time I spent in the at work. Funny, isn't it? Work is heavy but at least, I have some really funny colleagues to laugh with me and make things bearable.

At home, I have nothing to smile about and nothing to laugh about. Needless to say, this sort of emotion is a type of stress, and I begin to ache seriously all over the place since two days ago. My joints are getting swollen and I feel so tired all the time. I better watch some comedies tonight.

Wednesday, May 13, 2009

Top tips for a good night's sleep

I watched a programme about ten tips to sleep well, and I thought it is a good one to note down. Many of these are stuff we already know, but it is still a useful checklist.
  1. Take a warm bath 1 hour before bed time. The key thing is the warm bath increase you core body temperature. When they body temperature drops back to normal, you relax and feel drowsy!
  2. Try squeezing and relaxing of muscle groups, starting from the feet, and pay attention to the buttocks! (This works!)
  3. If you cant sleep well, get out of the room, Only limit a certain number of hours in the room for sleeping. (This works, I know. )
  4. For snorers/partners who snore, some OTC remedies may work!
  5. Blue light from natural day light is responsible for reduction of melatonin which promotes restful sleep. So, get a good curtain for summer, and a blue light for winter!
  6. If travelling across time zones, fast on the plane. When landing, take the food according to local time. Ie,if you land in the morning, have breakfast. The fasting will apparently help the "food clock" to take over
  7. No coffee or tea at least 4 hours before bed time
  8. Lavender smell/tea and valerian tincture helps! 
  9. If you cant get enough of sleep, but can nap, the most efficient time to nap is between 2-5 pm, for half and hour. (This works too! Have been doing this all the time while i was a student)
  10. Food - carbohydrates send you to sleep. Carbohydrates encourage the uptake of tryptophan into the brain, which then turn into serotonin. It is the serotonin which makes you sleepy(and happy!) Protein does the opposite. So,protein for lunch and carbo for dinner! (Protein keeps you alert! My pharmacology lecturer gave us the tip of consuming a light protein meal before exams!)

Thursday, April 30, 2009

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.

Wednesday, April 29, 2009

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.

Tuesday, April 28, 2009

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.

Monday, April 27, 2009

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!!!

Wednesday, March 25, 2009

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.

Wednesday, March 11, 2009

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.