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!

Those were the days - being told to "get a life" was "oh so common"

I am down with a cold today, and have a little "fogginess". This blog had been "abandoned" for a while - it has been very painful to revisit the difficult times, and be totally surprised not only by what I had written, but how the posts were written. I have been shocked so many times by the grammar, spelling errors and places where I seemed to have skipped words in a sentence - all due to my "fibrofogs".  I revisited the posts today, as a little reminder of how good things are, and what strategies I should use to cope with it, just in case the fog lingers.  


One of my posts surprised me with its "feisty- ness" :).  It was my response to a well meaning comment to my post about coping with fibrofogs - someone basically told me it is "all in the mind" and "get a life". Boy, I was strangely eloquent despite all the grammatical errors, spelling mistakes, and some strange sentence structures!

I really appreciate the long comments...showed that someone had cared enough to say something with the intention of helping me, helping me to clear those fogs.
However, I must disagree with some of the comments, and clear the misconceptions about fibrofog.
Now, it is not all in your mind (I wish it was). Positive thoughts help you to cope, and is necessary to keep you same, but it will not clear those fogs. 
Style my lifestyle?? I am no sit at home moaning about my life kind of person! Of course, you might think so, looking at the amount of posts I have done in certain periods! Those were the days that even when I was totally "dead", and had to stay at home, I still drag myself out of bed, to write, to document my life, to communicate! Yes, it is true. There were many times I do succumb to depression, but I always proactively try to identify it early, do what I can to avoid it and get out of it! BTW, depression is not something that you could just snap out of it! 
Do you know how many times I had to "proof read" a post, and spell check sometimes?? Any idea? Any idea what it is like to write half way, and then forgot what you were writing? No offense to others with the condition, but I have no learning disability! I am not boasting here, but just to let you know what it is like---I have held many scholarships for my academic achievements, and yet...
This is a medical condition, which affects you physically and mentally, regardless of who you are, what you have been (or are) doing, or how optimistic, purposeful your life have been! You get what I mean??
"When did you last visit a cemetery, a youth organization and volunteer to help, offer to help meals-on-wheels or any number of organizations and venues where your 'ailments' would be but imaginary vis-a-vis those of the ones you serve!"
Volunteer? Gosh, I have been an active volunteer for years!! Old folks home, charity shop, orphanage! Does that stop me from having a fog?? Does that stop me from having fibromyalgia??
If my thoughts or rather my will, is not stronger than steel, I would have collapse long long time ago!!!

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.

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! 

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.

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"!!

At the supermarket- can you pack your bags?

If yes, you lucky fella.

Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.

I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.

The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.

No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.

My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?

Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.

He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.

I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.

What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?

Lack of confidence

At job my interview last week, I was able to "psych" myself up. I was feeling really sick, worried about my joints etc, but I was able to "psych" myself up to be positive and upbeat, between coughs and deafening sneezes. I hardly had good sleep because I was sick, but I went in to the interview feeling that I had a chance and have to fight for it. I did not get the job offer, but I knew I put in my best and have nothing to regret.

Yet today, I am not even putting in my best to prepare for the next job interview tomorrow. Sigh. I have been feeling really tired and warm and in pain since my RA flared up again last week. I tried to lose weight so that I would look more decent at the interview. Instead, I triggered a flare. And more than a week "resting" makes me look more flabby than ever. As usual, another 1 kg of weight gain due to lack of activity.

Despite all the difficult things that have happened recently, I have been trying so hard to maintain an up beat mood. I have not been complaining about how horrible I feel, and what severe blow that is to my confidence. Here I am applying for jobs that require you to be "dynamic" and able to meet "tight deadlines", and here I am, hardly able to get out of bed before 10 am. Here I am tired, by 10 pm. Here I am trying to attend interviews, and trying to make myself look the best I could, despite another kg of flab.

But I guess the "balloon" was really deflated by people around me. Totally able bodied people telling me they cannot do this and cannot that. Totally able bodied, intelligent young people telling they have no hope of doing a long list of things. They have been telling me that they have achieved nothing, and can't achieve anything. Things are too difficult. And they regret A-Z. Life is hopeless.

Frankly, I am sick being the cheerleader. I just want to ask them to scram.

Can't they have some mercy on me? Can't they show me some mercy? Why do they need to behave this way now? Why?When I look at them, I told them"if you have no hope, what do I have??" Or perhaps they wanted to compliment me? They wanted to tell me I actually did many of their so called "the impossibles", while I was sick, tired, in pain and sometimes foggy? Life have not been fair to them? Tell me about it.

I am being totally fed up with all the men around me. Damn it. If they can't distinguish between "can't do it" and "won't do it", get out of my way. And let me use the little energy I have to prepare and do my best for tomorrow's interview. I know I am not in a state where I could do well enough to succeed. Ill prepared and all, but I just want to do my best, no matter how "hopeless" it is. So, stop telling me why the things they do are "hopeless". Stop telling me things which make me feel my efforts are even "more hopeless" than yours. Stop telling me that you can't do a good job because you don't LOVE what you do, and although you do not HATE it, you do not ENJOY it very much. I can tell you that I do not ENJOY going to work. I don't ENJOY getting out of bed early in the morning, sore all over the place, and get into that ICY car, or walk 1/2 mile in my swollen feet to the nearest station. I don't ENJOY walking when my feet are swollen, I don't ENJOY driving with painful ankles. I don't ENJOY spending 10 hours a day typing- that makes my fingers and wrist really painful-my neck and shoulders sore and painful even to light touches (that is the fibromyalgia component, FYI.). I don't ENJOY staring at the screen for a long time, cos my eyes are really dry (That is Sjogren's syndrome), I don't ENJOY long presentations too. If I am the speaker, my dry mouth becomes really uncomfortable, and people wonder why I sip water so much (if water is available). As the listener, I would squirm in my seat, because my joints would "frozen" or let out some cracking sounds. And I also don't ENJOY doing the housework, not when I am already dead tired and in pain after a long day at work.

And yet despite all the shit which is showered on to me, I am just like the little donkey. I shake my head, sigh, take a step and move on. Perhaps that is why I am surviving. I am just a little foggy brained donkey now, unlike all these intelligent people around me. They have a lot more brain cells and energy to complain than I do.

To tell or not to tell

Perhaps it is a consolation that every CV I sent out returned an interview.

However, ,I flopped at the spot where I had to account for the "gap". More than 1.5 years away from the workforce. Young professional. How do I account for that? I am bad at telling lies, but if I tell the truth... well. I have had enough of prejudice.

TO tell or not to tell?

Working with Rheumatoid Arthritis...know your Rights

...and your limitations.

After taking a couple of weeks off, I am now ready to go into my job search again. I have spent these few weeks reflecting on what went wrong, and what could be done better. It is very very sad but true- my RA had formed a big component of my work related problems. It is not all negative though. At times, I feel that I can understand and deal with issues better because of what I learned from RA, fibros etc.

However, it is undeniable, that my RA and fibro was a big set back in many ways, and may continue to be, unless I could overcome them.

1. My boss see me as "chained"- not able to find another job easily as I only wanted to work part-time because of my health.
2. I am seen as "unreliable", because of my RA flares. Although I only had 2 major flares, which would stop me from working even if I wanted, that was enough.
3. Work arrangements- some colleagues resent my "special treatment", and wanted the same "privileges" extended to them.

Unfortunately, I had not been familiar with the rules and regulation, and did not know what were within my rights. But so what even if I was?

Although there were disability protection acts etc, these are really unclear. What does "reasonable adjustments" mean? That was really entirely up to the employers to decide. The are plenty loopholes the laws are worth another entry!

I find the Employment section of NRAS very helpful and informative.

The problems that I (and many other RA patients!) faced at work is not something which I could resolve entirely on my own, despite bring out the whole lot of coping skills I have and getting full support from my family.

Communicating clearly about your condition with your colleagues and boss helps a lot (but may backfire sometimes). Making concessions (like getting low pay), and putting in extra hours to ensure quality work helps too (although you may see this as some sort of discrimination/exploitation!!).

However, improving the perception and understanding of other people about RA needs more than these individual efforts! It is all too easy for people to attribute your limitations to your lack of personal discipline rather than RA. How often have you heard " I am tired TOO", when you say you are fatigued? There is also an element of unpredictability and invisibility about RA's up and downs, which other could interpret as "inconsistent", and "lack of evidence". Ie, they may suspect that you are really waking up late when you say you have bad stiffness and need to come in 1-2 hours later.

Improving the work situation of patients with RA it is something that more formal protection in terms of regulations is needed. As RA patients, we need to create the awareness of these issues not only for our own benefit, but for all RA patients.

I not only want a job. I want to be able to work optimally, so that I can do my best! I want the chance to do what I can do based on my skills, education and experience. All I need is some minor modifications to get there. Can these be done?

The treatable and the untreatable

Any long time illness could cause significant distress ...

difference?

Treatable vs untreatable

visible vs invisible

controllable vs relapsing and remitting

Have you heard of DYS-au-to-no-mia?

This is a lovely poem by my friend, Joanne.
I have read it many times since she passed to me a few hours ago. It was lovely, and tells vividly the story of brave and bubbly struggling with dysautonomia.

Loneliness
It's a strange feeling
Being around people you know
And yet feeling like there's no one there

In the day when the nausea starts
Feels like your world has stopped
And yet around you
Life still goes on

Your world spins and a strange sensation
Washes over you like a wave
Your world is moving
And yet everyone is standing still

Its all you can do to lie down
You push your feet in the air
You just want to cry out "help me"
All you get is stares

Staying there on the ground
Taking in deep long breaths
You seldom get a comforting touch
Someone who says "I'm there"

Soon you will feel better
You sit up on your chair
People think that it's the end
But it's the start of the aftermath

Tiredness.
The first sensation you notice
And then the pain begins
Overworked? But you haven't done a thing!

A heavy weight presses down on you
Your heart, your chest it aches
You want to cry out, but you bite your lip
Only babies act that way

Looking for support from those around
You reach out your hand
But familiar faces hurry by
"We have our own cares"

Resignation.
The point that we all come to
Tired of explaining
Weary from arguing

Faced with the fact that you fight alone
Makes it a fight full of tears
The mountain seems high, the journey long
With endless thorns and spears

Hope.
The glimmer of sunlight behind the clouds
A promise of brighter days

You hold tight to it inside your heart
Believing everyday
Some day things will all work out
We'll hang on until that day

For your information Joanne had fibromyalgia too, and other "interesting" stuff as well. She has been my inspiration since I had this "interesting" thing called fibromyalgia.

Fibromyalgia's "brain fogs"; the most cripling, disabling part........

How do I cope with fibro-fogs?

Fibro-fog is the second most crippling aspect in my illness. The champion crippler is of course...fatigue!!

Fibro fog is the most "invisible" aspect in the "illness" I have. No one can see and notice it, let alone understand it. It is the thing that force me to retreat into a very lonely world.

Before fibromyalgia, I had been known as careless or forgetful in my daily life, due to my happy go lucky nature. I did not pay attention to small things, and can't be bothered to double-check things. However, my attitude towards work had always been different - the playful side of me gets really serious. Anyway, as a whole, my attitude to life is the cup was always half-full, and a pitcher was coming to top it up.

I guess my carelessness history adds to my pain now. My husband still can't comprehend what is a fog vs plain carelessness. Maybe, he just tries to avoid facing the facts. This strains our relationship, and pushed me over the brink to depression sometimes.

Other than straining my relationship, it is also taking away my identity: who I am. Just a couple of months ago, a friend told me he is keen to meet my husband- the man who married the smartest girl in class. I laughed! And I almost cried!

I have been academically inclined all my life. Ask any of my friends to describe me, and you can't escape from something related to "smart" or "intelligent".

But look at me now!!!

I can't even copy out my bank account number correctly onto the back of a "quick cheque deposit" envelope within 2 attempts.

I often lose my way when I am in an unfamiliar area, even if I had been there before. This was not something that could have happened. I had a very good sense of direction since I was a kid. I would not even lose my way in a big foreign city, and yet yesterday, I was lost on the way to work. I almost broke down on the streets!

How distressing is this? You imagine. You just imagine.

Fibro-fog is my the biggest enemy. I am not too sure if I will ever lose this fibro-fog thing, but I know I have to cope with it. I have to devise ways to cope with this invisible enemy. I hope to make this fog thingy just another "inconvenience" of life, akin to hailstorms and foggy misty mornings.

This would only be possible if I could recognise the warning signs of a heavy fog day coming on (yeah, developing my own "weather forecasts" system), and having effective ways to deal with it.

Fog sucks. But after all it is just a fog!!!

Related posts:

Fibromyalgia's Fibrofogs: How does one cope with it?