Spring cleaning this blog

When this blog was started in one bleak winter morning in 2005, I was quite ill with arthritis and fibromyalgia.  Not only was I too ill to work or finish my degree, I had also decided to move with my husband to a totally new city. I was far from my family, and friends.

This blog was really important for my healing, and while writing it, I hoped that it may some day offer some solace or help to another person with rheumatoid arthritis and fibromyalgia. However, because of the extreme fatigue and pains I had, posts were often hastily posted. Many of them were just rants of the day, and of benefit to no one but myself.

Almost 7 years later, and with a vastly improved health, I am back to edit this blog.

For the readers, I hope to make this blog

• easy to navigate and find information - Make navigation and retrieval of information possible for people with rheumatoid arthritis, fibromyalgia or CFS.  I know what it means to deal with fatigue.
• up to date -  In these 7 years, many things we know about the condition have changed
• a source of support - I will be honest in the posts about the difficulties (and joys) I had, but do so in a way to maintain my privacy

For myself, I try to see if I can monetise it in anyway.  Bouts of flares had at one time made full time occupation seemed like a dream at times. I have no illusion about the the security of counting on a 9 to 5 job as my income. It had always been my dream to have a steady source of income, built in my good days.  When I chance upon this blog about using the internet as a source of smart passive income, it felt like a timely reminder of my dream.

Wish me luck in achieving my dream, while helping others along the way.

Being the "weird woman" on the bus

This article was first written in winter, early 2009, but I was so tired, that I had not realized that I did not press the "publish" button then. There were lots of problems with the writing, and I can't resist editing the more horrible ones. Other than that, it is what it was. I am so glad that I did not get into trouble with the teenager.

p/s: I took the bus, because it was less crowded, and I get less flu/cold than in crowded trains. Those bus journeys were long...

"A few days ago, I was mildly verbally abused (if there is such a thing) by a teenager. You know, one of those angry teenagers. She was not exactly "bad", to be honest, and I was partly to be blamed.

I was on the way home from work. It was one of those days where I struggled to get into work because of morning stiffness, and watched the clock. I was so tired, than I sat totally "zoned out" on the bus.  

My hands felt to stiff and tired from holding on to the coat and bag and keeping it on my lab. If you don't have rheumatoid arthritis, you may not understand this part. If you have, you know the pain of holding something in place for about one hour. If someone sits next to me on a stiff day and I have to sit still and hold my bag,  I can feel so stiff and sore that I felt that i need to massage my elbow, fingers and shoulders when I get home sometimes.  So, I sat there "lazily" and kept the coat in place with the weight of my arm. It was pretty "loose" - partly occupied the empty seat next to me. The bus was about half full and there were a quite a few empty seats around me. 

I was staring blankly out of the window when I suddenly heard a pretty loud "mumbling".  I had no idea what was said, but I turned away from the window and noticed this girl staring at me. I mind was empty, but I guessed she probably wanted to sit next to me, and so took my coat and cleared the seat for her.  I did not say anything to her or smiled - I was just too tired and focused on not falling asleep. The bus was going through a rough part of town, and it was not the place to fall asleep.

She sat down next to me, and then started talking loudly to her friend seated across the aisle about the "bitch". It took me a while to realise she was referring to me and how rude I was, but I was just too tired to respond. When passengers seated behind us got up, the girls moved there. This girl then started to hurl things they picked up from their seat to the seat next to me. In my fatigued state, it took a while before I register  what was going on.

"This newspaper is for you, and of you can have this water too.....etc etc." I was a little shocked to see the dirty newspaper, plastic water bottles etc flying my way, but was simply too tired to have a response and carried on looking out of the window. I was just hoping she would stop. Fatigue is the correct word, actually. No one gets too tired that they become unresponsive and felt no anger or have no reaction despite what was going on. 

Fortunately, her friend told her to stop. "I think that is quite enough, you are beginning to look like a bully".

 "This bitch was rude - she deserves it  etc..$%$£^%5(...because I am black.... "

"Don't you think she looks tired? May be she just had a bad day, you never know. Why take it personally?"

Who says we only have insensible youth in the society? When I had a bit of rest and had the energy to think again that night, I was so grateful that this sensible girl stopped what was going on. She probably saved me not just from further troubles that evening, but also kept my confidence intact. At that time, I it was not long before I held a challenging full time job again.

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!