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 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?

Exercise helps for CFS? Check the definition

There is a very good article in New York Times, explaining the findings of a study published last month in The Lancet, which reported that exercise and cognitive-behavioral therapy could help people with the illness.  That study is already quite well known, and used as a basis to push many CFS and fibromyalgia patients to exercise.  My doctor had also suggested me to exercise, and to "be positive".  Being treated as "depressed" when you need serious medical attention doesn't help - it drives you to the depth of depression even if you were not. 


I thought it is important to highlight the limitations of that Lancet study to other fibromyalgia patients. Here is an extract from the NYT article which may help you to explain to your doctor why pushing you to exercise might not be the right thing to do:

The British scientists who conducted the research identified study participants based largely on a single symptom: disabling and unexplained fatigue lasting at least six months. But many researchers, especially in the United States, say that definition takes in many patients whose real illness is not the syndrome but depression — which can often be eased with psychotherapy and exercise.

I tried to push myself to exercise when I was not ready for it, and on every occasion, that resulted in a bad "relapse" - miserable days in bed, symptoms all flare up.  


Today, I am relatively well . Sometime ago, I had given up listening to doctors who did not listen to me, and listened to my own body, and started my own "programme".  That was the start to better days. 

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.