9 Best Things About Fibromyalgia

Found this on a website, thought it is quite funny (from Zazzle.com amazing website of super cool products) :

9 Best Things About Fibromyalgia

Life's a Challenge

Everyday is a new challenge to me. My daily routine is to get to bed on time and get up on time to go through my morning regime before I can get my butt out.

In order to achieve this, I face several obstacles. Firstly, getting to bed is simply just jumping on it but not falling asleep or getting sufficient 6 hours of REM sleep which means waking up not refreshed. Next would be able to get out of bed and to the shower which is another challenge. On good days would be crippling and crawling around the house and using a cane to facilitate my mobility on real bad days. It takes about 45 minutes to be able finally step into the shower. Then I'm off to work.

Public Transport

Taking a public bus during the morning peak hour rush can be so frustrating yet a challenge. We squeezed ourselves into the bus and always almost kiss the door or the driver. People standing may just rub against each other's shoulders or be embraced when the driver jam break. Women are at a disadvantage though.

So that's me, standing and holding on to the railing. I need to balance myself at an angle depending on the speed running and the start-stop timing.  My back and hips would hurt so much while standing after 20 minutes that's my suffering in silence while pining in hope for a seat. Each bus trip seems like an endless journey. A journey of struggling to cope with chronic pain on the job. The debilitating effects can have major repercussions just to keep working, never mind about advance in careers, while battling persistent pain caused by Fibromyalgia (FMS).

This poem was written during one of those bad days when things were getting out of perspective, but it's so true and exactly the life of the sufferer of FMS.

It's morning again

Another brand new day

Along with the aches and pain

Will follow to my usual place

Bus packed with people

Without any extra space

Can't breathe, can't stand, can't sit

Wishin someone let me have a seat

A few minutes is all I need

 To ease my agony

Such a torture, what a pain

Having to go through every single day

There's no question about it. Chronic pain presents tremendous challenges for people who are trying to build and maintain a career.

If you like poems, there are more in my next post on "Fibro in a Nutshell". Poems are therapeutic and helps in distracting pain. This post will continue to have unlimited updates as I go along living with Fibro.

What is Fibro?

How do I explain to others that this condition is limiting my physical ability and daily functions? How to explain to fellow colleagues and friends? Doing housework is a BIG issue because all I can do is just anything not washing more than 5 plates or bowls, I spend 30 minutes to hang up a 5 kg load of laundry or 2 hours vacuum and mop 3 rooms. I can hardly accept imperfection of my own home, as I've been an almost clean freak all my life. 

My greatest gift in my life is having the best mum in the world. She understands that I lack the physical abilities ... my wrist tendinities, muscle loss, lack of energy and stamina but I have yet to explain to her about my Fibromyalgia (FMS).  She does not need to know the medical terms and prognosis of this illness but I know for sure she understands from the way I walk, move and behave.   On good days, I would try to do as much as I can then pay for it later. I have to let her know that I still care despite my condition and I still contain the filial piety cultivated in me.

I usually ask the person how they feel when they have the flu. If they reply positive then I will tell them that having Fibromyalgia feels like that every single day, except to add in shooting shocks of pain and sometimes extreme dull, radiating pain. I would also mention the pain feels like having lots of toothache all over.

I hope that by explaining what Fibromyalgia feels like the person will have something to relate the information I’m giving them to without being confused with medical terms and processes they have never heard of before. If I continue on about mental aspects I also say there is this thing called Fibro Fog which makes it hard to recall words and keep trains of thought. To put it simply, it is forgetfulness or some may say that I am "blur" or lost. I know this is not an all-encompassing description, but it covers a lot in basic terms that I hope they will remember.

I hope my explanation will raise awareness and enhance their relationship with those who have Fibromyalgia – including me!

The beginning

I couldn't recall exactly when it started but after being diagnosed, looking back I would have been malaise for a long time then, but had dismissed it to the fact that it's age-related. One morning, I woke up with extreme fatigue, it felt like I had been ran over by a truck and stiffness all over and thought I've become 100 years old overnight!  During that time before I found out about Fibromyalgia (FMS), I had always attributed it to Hepatitis C (HCV). However, statistics and research have published that most cases of Hepatitis C (HCV) are asymptomatic, exceptional being those having late stage liver disease or cirrhosis. Not long after, after extensive research, discovered HealingWell, an awesome US site where you meet, share and interact with fellow "fibromites". There are so many suffering with more debilitating symptoms. From here, I have learned there is a long list of Fibro symptoms where I found myself there.

Besides having widespread muscle aches and stiffness, the intense fatigue is worst every morning that my morning prayer used to be: "Lord, please just let me sleep forever than to suffer this way everyday.". However, it gets better gradually by late morning, sometimes during mid-day if work has been stressful and in the evening when its time to knock off.

It became my main excuse of isolation, indulgence in occasional pity party and depression. I have rejected all invitations for any leisure activities during after-hours. I have become a Spoonie. I have to count the number of spoons I have for the day, one for each activity or destination.  But I'd really loved to attend all those functions, parties, wine and dine etc. I've always enjoyed the aroma of the French Merlot and a Cuban cigar to blend into and of course, LIFE.

The lack of concentration and brain fog has been bugging me. I started getting so forgetful that it becomes embarrassing especially during the course of my duties and interaction with friends and colleagues. The short-term memory loss worries me.

Why is FMS so debilitating? It is not a disease that shows up on blood tests, joints feels swollen but nobody can see it, feeling bruised all over but its not, feeling sleepy but can't fall asleep and waking up 5 times a night and finally stay awake counting sheep. FMS does not cause any damage to the organs. Even the cause is still unknown, there is ongoing controversy among researches and the medical community. What I've learned so far is that the pain receptors have gone haywire, sending the wrong signals to the wrong place. So it's got something to do with the brain and the central nervous system.

Myths and Facts About Fibromyalgia

 Myths and Facts About Fibromyalgia