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!

Winter preparation 2012

Winters are different if you have rheumatoid arthritis and fibromyalgia.

There are a list of things to do:

HEALTH
Apart from the cold and bad weather which can make morning stiffness more uncomfortable, I also try to prevent the winter infections such as cold and flu. For some people ( including me), a bad infection where your immune system works like crazy could trigger a flare. This is my checklist for health:

1. Flu jabs - This needs to be taken every year, and ideally as soon as it is available in September/October. It takes a few weeks before the jab fully work. I usually take mine in pharmacies. 
2. Get ready antiseptic alcohol hand gel - very important to prevent catching cold/flu when going out and taking public transport
3. Disinfectant sprays for the home/office - My favourite is  "Neutraair" from Dettol for home. It is a "2 in 1 "-  eliminating odours and also killing bacteria at the same time
4. Omega 3 supplements and multivitamins
5. Medicine cupboard - antiviral for flu, cough and cold medicines, enough supplies of pain killers and medicines for RA/fibromyalgia. 
6. Stock up on heat plasters/muscle rubs which feels warm instead of cool

KEEPING WARM

1. Central heating - turn on the heating while it is still warm for a couple of hours to ensure everything is ok.
2. Double check your utility tariffs - you don't want to be caught with surprise increases
3. Additional quick heating available for mornings that are exceptionally cold (My heater fan bought in 2009 - it is one of the best investments I have ever made!)
4. Supply of stockings, thermals, gloves!
5. Supply of small towels and a working microwave for my hot towel compress ( sooth stiff joints)

PREPARING FOR "BAD WEATHER DAYS"

This is for "hunkering" down - days when you are unwell and don't want to get out, or the when the weather is really bad and you don't want to slip and fall. 

1. Stock up food  for bad weather days. I have a list of food that I always have in my fridge and cupboards in case I get a flare, and also have my list of "flare food". I make sure these are enough!
2. Working from home arrangements in place
3. Check other "supplies" e.g. detergents etc
4. If you have a car, it is also time to make sure that it is in good order and have your deicer etc ready

OTHER THINGS TO MAKE WINTER ENJOYABLE

These are the additional steps I take to make the winter a cozy one.

1. Coat/winter wear in good condition - check buttons, zips etc are in good condition.  I don't want to mend clothes in a dark winter night, especially if I have a flare
2. Shoes/Boots have good grips/soles in good conditions
3. Candles and lavender essential oils to make the home a cozy one
4. BISCUITS , instant hot chocolate   :)
5. Get ready some books and other "indoor projects". 

Does anyone out there have other tips?

Still alive and kicking!

I am still alive an kicking! In fact, I am better than ever.

RA and fibromyalgia still rears its head often, and can cause pain and problems, but most of the time, I am pretty alright. My mantra is simply

God grant me the serenity,
to accept the things I cannot change,
the courage to change the things i can
and the wisdom to know the difference.

I guess, my "prayer" is mostly answered.

There is light at the end of the tunnel, and if like me, you have RA and fibromyalgia, dont ever give up.  Grab every opportunity you have to get better, rest well and let your body recover whenever it needs that break. Yes, I still do get those fogs, pain and  fatigues from my fabulous fibro and RA from time to time, but I am much better positioned to deal with them now. Good luck fibromites.

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

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"?

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.

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? 

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.

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.

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.

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?

Still swollen..........

and painful.

Reward? Any rewards for this?

Yes, an excuse to buy shoes. No one would have the hear to tell a women with swollen legs, and feet of changing sizes she had too many pairs of shoes.

It is summer, it is the sales, so pluck up all your energy and get something!

14 days since the DIP started to swell..

It had been 14 days since my DIP on my ring finger started to swell. I remember really "noticing" it on Thursday, 5th June, when it became painful at work.I was probably there since Wednesday. As usual, before any "symptoms" started, I was drinking like a parched camel finding an Oasis. When I weight myself that day, I noticed I "put" on 2.5 kg in 2 days. Clothes seemed tighter, and shoes - i need to get my "big" shoes. (I keep shoes of a few sizes. Yes, RA is a perfect excuse to buy shoes).

It was a pain. I ran out of diclofenac. My rheumatologist refused to prescribe me new ones- she said "I did not need them"- that was what the nurse told me. Well, she is the doctor, therefore she was always right. My standby supply of ibuprofen ran out on Sat and I had to go and get it from teh supermarket!

Living with Arthritis

I was pleasantly suprised by the booklets published by Arthritis Care, UK.

http://www.arthritiscare.org.uk/LivingwithArthritis

Check it out :)

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!

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.

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.