My legs are giving way!

Got up from the wheelchair today after taking a wander around the hospital, and crumbled to the floor. It was totally without warning. It's as if my brain and my legs are not talking to each other anymore, or my brain thinks my legs are strong enough to sustain my body weight but the legs definitely disagree. Nothing's broken, maybe just a bit of confidence and pride at the least. Oops..the nurses had to fill in an incident report...

Hooked up to this and that...

The pain's getting bad...breathe...even breathing hurts...I pride myself in having a high pain threshold, both physically and mentally, but dang...it's burning, aching, searing, ripping....all put together....Can't really describe it, nothing like I've ever felt before. Trying to shift myself in bed feels like I'm trying to tear my own muscles apart. Everything from my neck down to my knees is on fire. Thank goodness they are hooking me up to some magic gummy-beary juice as someone put it. Pulse steroids flowing through my veins...trying to get the inflammation down. My body also feels like it weighs a ton. More diving tanks strapped down to the divenazi...

But can I go home before the New Year?

Back in the Hospital AGAIN

This morning, I waddled into the Rheumatology, Allergies and Immunology clinic of Tan Tock Seng Hospital with a referral letter from National University Hospital. I sought another opinion here but didn't leave the clinic. I was told I needed urgent admission. It's a few days before the New Year!! Fix me before then, people! I'm not spending my New Year's in bloody hospital ( excuse my language )!!

Christmas Day like no other before!

Something was not quite right this morning. I couldn't pull myself out of bed, not matter how I tried. I shifted painfully, dragged my arms and legs to whichever position I thought would help, I just could NOT get out of bed. It was like someone or something was pinning me down. I knew what the something was, it was the polybloodymyofrigginsitis. But the someone may have been a greater unseen force. Yelled to my mom and said hey, if there was any chance that I was gonna make it to church for christmas morning service, someone's gotta come yank me out of bed, and I need a wheelchair too! Hence the day went smoothly considering...that I was losing my mobility fairly rapidly...

I'll be checking in with the consultants tomorrow....

Going to the toilet ain't so easy anymore...

I like to have a little sit on the 'ole john sometimes, I know it's bad news for the rectum. An unsupported rectum sitting on the loo reading the paper spells trouble with haemorrhoids. Today I avoided sitting on the toilet if at all possible. Why? Well simply because, once I'm down, I can't get up!! It's like a ton of bricks attached to my waist and no matter how I push off, the thighs which are on fire right now, just cannot seem to lift my body weight off the john. Polybloodymyofrigginsitis...

At least this might train me for the annual air-piss competition at Ko Pha Ngan's Full Moon Party! Woohoo!

(No I have no picture to show of me struggling to get up from loo..nor air-pissing ...so not funny!)

Dared to venture north with polymyositis... Whye Mun at The Attic!

How could I turn down an invitation to watch a magical Christmas performance by Cameronian Awards Best Solo Performance nominee Whye Mun at The Attic? Despite the inability to climb stairs or walk very well at this point, I made it to this pleasant nook in Bangsar with the help of some very lovely people, one of whom single-handedly carried me up the long flight of stairs to the third storey. ( Yea, Daniel, he da man! ) It was a refreshing change from house arrest with my medical cocktail. I love the festivities of the Christmas holidays...when the merry-making is in full force, it's not just the alcohol-induced warmth of those around you that you feel.


Big Strong man Daniel, the human stair-lift...Sorry Chui, shouldn't inflate his ego anymore eh?

The people who make us laugh!

Nigel the Friendly Boxfish....This was taken after our trip to Tenggol in August, but thought I'd put this up here if anyone needs a giggle. Non-divers, please ask a diver what a boxfish is.



Also starring the 4 hunkydories...we shan't name any names...


The Tenggol Diving Gang. Had a blast!

I AM going to do these things again!

Got them stitches out!

This poor right leg has suffered most of the war wounds in my short life. The knee has evidence of hockey battles on the pitch. Now to add to the permanent scars...a lovely centipede as a reminder of what is now the biggest challenge of my life! The biopsy report did read "necrotising myopathy compatible with polymyositis". We're still awaiting the electron microscopy report, but am not expecting it to say any different. Sprayed it with Opsite to keep the buggins away. What tattoo do you think I should have over it?

No big fan of needles but whatever works!

At the acupuncturist to humour me mom...no seriously, at this point, I'd try anything! ( well, within reason )

What is Polymyositis?

Polymyositis (PM) is an uncommon autoimmune disease which causes inflammation leading to destruction of muscle and increasing muscular weakness. As the disease progresses, muscle tissue may be replaced by functionless scar tissue.

The cause of the disease has not been found. It begins when an unknown trigger stimulates the immune system to spontaneously produce autoantibodies against normal healthy tissue. Some researchers speculate that there may be an infective element involved such as bacteria, parasites or viruses. However there is no hard evidence to date. it is also not known to be an infectious disease, hence it is not passed on from person to person.

The muscles affected are typically those closest to the trunk or torso, or what is known as the proximal muscles. The muscles in the hips, thighs, shoulders, upper arms and neck are usually affected. This results in weakness that is symmetrical, affecting both the left and right sides of the body. This muscle weakness can be moderate to severe.

The signs and symptoms of PM can occur gradually, so it may be difficult to pinpoint exactly when it may have started. It can occur over days, weeks or months, and the symptoms may fluctuate from time to time. The loss of strength in the proximal muscles can be noticed as difficulty getting up from chairs, climbing stairs or lifting above the shoulders. Trouble with swallowing and lifting the head from the pillow can occur. Occasionally, the muscles ache and are tender to the touch.There may be a general feeling of discomfort or fatigue. weight loss and/or a low-grade fever may also be present.

Polymyositis is more common in females than males, the ratio being about 2:1. It can affect all age and racial groups, but it is usually rare in people below age 20. About 60% of cases occur between 30-60 years of age.

PM is a chronic illness with periods of increased symptoms, called flares or relapses, and periods of minimal or no symptoms, known as remissions.

It also can affect other areas of the body and is, therefore, referred to as a systemic illness. Occasionally, it is associated with cancer or with other diseases of connective tissue such as systemic lupus erythematosus (SLE), scleroderma and rheumatoid arthritis. Hence it can be a difficult disease to diagnose as the symptoms may mimic other connective tissue diseases.

So how did this happen?

Who knows?! All I know is that I have always been a fit and healthy person, never been particularly sick all my life apart from the usual coughs or colds.

I've always been active in school. I was in gymnastics, athletics, cheerleading, field hockey, and loved the outward bound school trips to East Malaysia. I love the great outdoors and sometimes the great indoors too. I suppose some things like bowling and wall-climbing are done indoors! I usually get up to some form of monkey business, be it flying halfway across the globe to ski in Whistler or trekking across Sri Lanka and Cambodia doing voluntary dental work. I even managed to throw myself out of a plane at 14000ft in the UK with the help of a tandem skydiver. I took up scuba diving this year, and made several trips in Malaysia to explore the underwater world which was a thoroughly enriching experience. I should mention that I had a phobia of the sea before, it must have been from watching too many JAWS movies when I was growing up.

So when this disease hit, it was a bit of a shock, though I probably did see some warning signs the week before I went to hospital. I was fatigued but I thought it must have been from starting my new job, or perhaps I was coming down with the flu. It was only when I realised I was struggling to put on my own clothes, and getting my legs in and out of a car, that alarm bells started ringing in my head. I was having trouble doing normal everyday things; getting up and down a bus, chasing a bus (!), walking up stairs, brushing my own hair and trying to tie it up. All these tasks felt unusually difficult. The brain would tell the legs to move but they were just not responding like normal. The only way I can describe is like there were diving tanks strapped to all my limbs as well as my front and back.

Kick up the backside

This morning I had a moment of weakness. I'd love to blame the drugs for these crazy mood swings, but I know it's mind over matter. I need to kick these morning blues up the backside so this body can get up to the usual mischief again!

Elephantitis has set in!

Ooo...these are nasty pics, but one has to see them to understand the water retention that is taking place in my legs from the inflammation of the muscles that are breaking down. The kidneys are struggling to clear it and being damaged as we speak. Sorry about the grim toenails too, I can't reach them to paint them!

Off to rest the weak body..

Just when I thought that maybe I'm starting to slowly beat this thing after a week of steroids, the docs tell me that actually the muscles are not too happy. My CK ( Creatine Kinase ) levels went back up from 9743 last week to 12879 U/L yesterday. Normal levels should be between 20-300 U/L. That's a marker for the amount of muscle damage that is taking place. At least my kidneys are still holding up ok! Oh well....guess I'll try to live up to my t-shirt.

My new morning regime

Since I'm on house arrest after bartering a discharge from the hospital, I thought I'd share my thoughts slowly about the past few weeks on this blog. But first of all, let me introduce my daily cocktail of wonder drugs....

The right eyebrow is a multivitamin, all the goodies that we busy people need to sustain our good health. I have been taking this fairly regularly in the past. Perhaps not as disciplined as I should have been, but I didn't see the need to be absolutely religious about this since I was a fit, healthy and bouncing person eating a well balanced diet. Anyway, this will become a daily fixture now, no harm popping one of these everyday.

The left eyebrow is the Calcium and Vitamin D supplement. This is to stave off the early onset of Osteoporosis, which is a common side effect of the smilie below.

The right eye is Famotidine, a proton-pump inhibitor that helps to prevent or reduce gastric ulceration, which can be caused by the nose and particularly the smilie. I have to take this in the morning and in the evening.

The left eye is the Potassium tablet. This will help replace the loss of postassium, which I will be weeing out at an increased rate due to the diuretic ( the white half-tablet tash ) that I've just started taking this morning to reduce the uncomfortable water retention in my legs.

The orange nose is Diclofenac, a non-steroidal anti-inflammatory drug. Essentially a painkiller with the added property of damping down inflammation, which is affecting my proximal muscles at the moment.

The white half moustache is Frusemide, the diuretic which is supposed to get rid of my elephantitis, as I call it. Water retention in my legs, especially the lower half. This was noticed before I went into hospital, but it has since gotten worse. Towards the evenings, my legs feel and look bloated, and the skin becomes very taut.

And finally...the evil smilie...9 tablets of Prednisolone, the wonder steroid that is supposed to tell my immune system to stop being daft and attacking my own muscles. Only problem is that the pred is non-specific, so it basically tells my immune system to switch off, period. Hence all the side effects and potential health problems that it can bring about. More about this later on when I get round to explaining what polymyositis is all about.