How it feels to live with RA

A few months ago I was diagnosed with rheumatoid arthritis. It all started off with my neck feeling stiff over last August; the lymph nodes were swollen, and all I thought was that perhaps my ballet training got a bit too intense over the last few sessions. The skin in my hands started cracking for no reason, and what followed next was my left hand feeling stiff. All I did was blaming it on yoga, and perhaps on a skin fungus that happens to many people in Hong Kong once the weather cools off.

On the night of the HKELD Awards in September, my Inherit the Wind cast and I were out celebrating the four awards won by Aurora Theatre; a drink after another, a clumsy dance and I found myself on the dance floor in a very ungraceful manner. The day after my body felt awful, well expectedly after such fall. As my hand felt horrible, I knew that that fall had probably made things worse.

Fast forward to two months later; my hand didn’t get any better. I decided to see a chiropractor who slightly improved my condition during our sessions, but the effect didn’t last for too long. Pain spread on my upper arms and my other hand for no particular reason; I knew right then that the fall had nothing to do with what I had and that something was wrong.

 

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One always knows. I have lived in my body long enough, despite people telling me I shouldn’t read too much crap on Google medical websites and that I’m a hypochondriac by nature. I think that listening to your body is always the best thing, regardless on what everyone thinks.

Pain interrupted my sleep; I started waking up in the middle of the night feeling horrendous. I had to get up and walk just to activate the muscles, but as soon as I returned to bed, the pain manifested itself a few hours later, not to mention that it took me forever to fall asleep again just for a short while.

Going to bed became the most dreaded moment, as sleep was always interrupted by pain. A few days later I literally couldn’t take it anymore. I went to see a doctor who referred me to a rheumatologist. I left the clinic in tears; why on earth would I need a rheumatologist? What the hell was wrong with me? Why would someone in her mid-thirties, reasonably healthy, vegetarian and physically active need to see a specialist for something that sounded really scary?

The rheumatologist gave me an ultrasound that showed a lot of inflammation all over my upper limbs; I could barely open my right hand for the examination from the pain I had. The diagnosis was more complicated than I thought and the doctor could not give me a straight answer.
It felt like being in an episode of Doctor House, where I got tested for lupus, as well as lung cancer (the results came five days later, which is a long time to think) and various autoimmune diseases (I’m still testing btw). I got put on steroids for a short while, I took blood tests (five in two weeks to be exact), had an MRI, a CT scan, and several X-Rays. Too bad I didn’t have Dr House with me, I would have utterly enjoyed that. On top of that, I have also tried acupuncture, but I hated every single second of it. It might help some people, but I could find no relief in it.

 

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Ultimately the diagnose was double: rheumatoid arthritis (which attacks the joints) and derma-myositis (which hits the muscles and the skin). They are both autoimmune, they are both awful, painful, and are caused by my body that, all of a sudden, has decided to kill me.

For months I could not do anything: I couldn’t lift chairs. I couldn’t raise my cat. I couldn’t get dressed in the morning; my husband had to do it for me. Washing my hair was hard, opening jars or taps was virtually impossible. I craved to feel myself again, to be back to normal, but I had no idea how long it would take me and if it could happen again at all.

Treatment came a couple of months later, and I started directing The Crucible while experiencing all this pain. I could not drop a bomb on the cast. None of them had any idea how bad it was, and only two productions member knew about the cancer scare (for practical reasons, mainly: if I had to undergo chemo, someone would have to replace me, but luckily we didn’t have that problem). When I first mentioned arthritis, my cast knew I was experiencing physical difficulties, but I reassured all of them that my problem was taken care of. Not looking sick helped in that way, as my pain was all inside, and didn’t show outside; I could disguise myself as fine.

Directing The Crucible was what kept me together. I couldn’t let the cast and the production team down; they didn’t know, and yet they were the ones holding me together when things felt dreadful. Them, together with ballet. I still believe, for some silly reason, that I can dance my way out of RA. Ballet has kept me active, motivated, focused when those awful dark moods (mostly because of lack of sleep) stricken in. When reading about life expectancy being reduced by at least 15 years, I just put on my dancing shoes and avoid thinking about it. Or I read a new play.

 

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As I have experienced this excruciating pain, my thought went out to those who suffer for any physical reason. I felt bad for being such a wimp when I knew that my friends who faced cancer dealt with much worse and realised the importance of listening to our body when it’s trying to tell us something. Hear no other voices: no one has the right to say “you’re fine, it’s nothing” when clearly things aren’t.

 

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A few months later, now that The Crucible is done and that we are starting working on another project, I can feel almost normal again; I am under heavy medication, but the doctor is positive that things can be improved. If you experience pain, speak out. Don’t ever think pain is normal just to avoid going to the doctor, or to avoid spending money- we owe kindness to ourselves.

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