Arthritis and fibromyalgia - impact on my life in numbers

It has been 10 years since I was diagnosed with fibromyalgia, and about 11.5 since my RA started.

Impact?

PERSONAL/WORK

1. Post grad degree finished: 1
2. Post doc position: 0
3. Broke up with boy friend: 1
4. Getting married: 1
5. Suspension of studies because of RA/Fibro: 1
6. Number of years without a job: 1-2
7. Number of years with part time job: 2
8. Number of years settling for an overqualified job: 5.5
9. Almost knocked down by car ( fibro fog) : countless - 1 really narrow escape
10. Lost job/had to quit because of illness : 2 times, 1 of them was not really due to illness, but the illness was a convenient excuse
11. Considered a fraud - not really ill, but pretending to be ill: countless
12. Current income vs income if taking projected career path; 30%

MEDICAL STUFF

1. X -rays: countless
2. Blood investigations: countless
3. Bad bruises from taking blood: countless
4. Physiotherapist: 2
5. Professor(s) shed a tear after noticing the bruises I had from blood sampling: 1
6. Phlebotomist started crying because he could not get blood samples from me: 1
7. I cried because phlebotomist cried, and indulging myself in self pity: 1
8. Body weight increase: 46kg
9. NSAIDs: lost count
10. DMARDS: hydroxychloroquine
11. Massages: lost count:
12. % of income spent on massages: 10 % previously, 5% now ( income increased, but number of massages reduced slightly)
13. $$ spent on doctors and drugs: 25% to 50% in the first few years, negligible now - mostly on ibuprofen, muscle rubs/ibuprofen gels, heat plasters
14. Massager/massage chair for home use: 2

The most important and painful loss cannot be counted. It is the loss of opportunity to have kids, have job that fully stretch my skills and an active social life. Despite being relatively well now, I have to choose between a full time job and an active social life and kids. There is just not enough energy to have more than 1 thing. Without $$, I cannot afford a kid - I imagine I will need to hire help if I have kids. And no, there was not much social life when we could barely pay bills.

Nevertheless, I know I had beaten many statistics. My next target is to swim 3x a week and  lose the extra fat. This will be no mean feat, as strenuous exercise is one big trigger of a flare!

My weather predicting bones...

agrees with the weather prediction man.

I am aching all over!!

Saturday day weather

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

Sunday day weather

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

Monday day weather

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

Tuesday day weather

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

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!

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!

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"?

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? 

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

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.

I am tired.

This is how I feel, except that I am not so cute.

RA party is in town again.

Enough said.

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.

What to do when you have a fibromyalgia/rheumatoid arthritis flare?

A flare is not fun. No, there is nothing much you could do. You are sore and painful in many places, fatigue, and perhaps even having some brain fogs. Typing, like what I am doing now, may be quite limited too.

For me, a flare days means I move from bed- sleep or trying to sleep, to getting up to make myself some food (important - hunger creates more fatigue and fog, in my experience), doing something to kill the boredom - read, watch television etc and most importantly, my self-healing rituals. I call them rituals, as there are no scientific basis to most of these. This is the list of things I do

1. Take my medications - NSAIDS. This helps to lessen the pain and swelling.
   
2. Rest a lot - sleep.
   
3. Keep comfortably warm/cool. Sometimes I feel very hot during flares, and I will try to keep cool.
4. Take a hot bath/shower. The hot water relieve the stiffness.
5. Use hot towels - put it at places where there are taut bands/points. See my earlier post for details.
   
6. Acupressure and massage. I usually DIY, if my fingers are alright. I also use other objects to help. I find that the acupressure points are remarkably similar to trigger points. Acupressure is Eastern, while trigger point therapy was developed by Western trained doctor. I found this book by Clair and Amber Davies helpful: The Trigger Point Therapy Workbook: Your Self-Treatment for Pain Relief (Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief). It is less than £10 from Amazon UK, a very good investment.

7. Stretch. This keeps you supple and relieve the stiffness. I normally only do this late morning, after the hot bath, and start with simple moves.
8. Eat well. This can be difficult sometimes- loss of appetite or no energy to prepare food. I eat lots of fruits (get it delivered, or get someone to buy it), or at least drink a lot of fresh fruit juices. I know how difficult this is, especially when the flare is prolonged. Fruits are really heavy and expensive if it is delivered. I also try to make sure I maintain my omega-3 intake- through pills or those tinned mackerels!

(Note...it takes a long time to put this post together. In between, I slept, ate, stretched, and soaked my fingers in hot water. I hope it is of use to others.)

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"!!

Bruises - is it the RA or fibromyalgia?

Before I my swelling starts, I would notice bruises on my arms and legs. Sometimes they even appear on the thighs.

What cause the bruising? Is it linked to my fibromyalgia or rheumatoid arthritis? 

Any other patients/doctors noticed the same signs ?

Will someone please do the research?