Posts tagged "gravesdisease"

Rebuilding

1. Almost exactly two years ago I was, too, on a flight to India.
   
   Only then I did not know exactly how drastic a turn my life would take on when I returned.

2. More and more of my friends are getting diagnosed with diseases similar to mine. Autoimmune diseases are the new black.
   
   Across all of these experiences the one we've all had has been the extreme upheaval in all of our emotional lives.

3. Sometimes I wonder if the person who made those decisions at the time was me, or the severely impaired bodily part that's wreaked havoc in my head and my heart.
   
   Even if the conclusions are the same in the end, I would still like to know that I had some control. But I did not.

4. There is nothing I hate more than feeling like my self-determinism, even if it doesn't really exist, has been impinged upon.
   
   Even if the other person making decisions for me was just a temporarily damaged version of myself.

5. I've spent almost two years rebuilding my life.
   
   I've subjected it to some pretty extreme versions of what it could have been and can be, and now I've chosen the version I like best.
   
   I like this one.

6. This one:
   
   This one is happy and confident, pushing 30.
   
   This one is writing more, and better.
   
   This one has had a handful of career highlights and is working harder to create the sorts of situations and opportunities that will define the next decade; it's within grasp.
   
   This one has an incredible support system in Singapore, Malaysia, India and all around the world and feels like the luckiest person in the world to experience such love.
   
   This one has a loving family. A beautiful dog. A lovely house in a magical part of the city that she loves more and more. A slew of projects taking shape.
   
   This one is learning to finish what she's started.

7. I've struggled to articulate what I feel whenever I return to the city I once lived in.
   
   It is a living museum of my loves and losses.
   
   It is a diptych where one side is the city that I once knew and the other is the one I no longer do.
   
   Time has stopped for me in that city. But I am learning to love it again after.

8. The city that is a living museum of love and loss merely preserves them so I can learn to love again.
   
   The streets I walked in in them will never be the same.
   
   Just as it should be possible to hold two opposing positions at once so as to form a better informed opinion, so too should it be possible to hold multiple feelings simultaneously so that we can love better.
   
   For now I pick: terrifying, amazing.
   
   Life's too short for compromises. I'm too fond of jumping off boats then learning to swim, anyway.

Living with Graves

A year and a half ago, my friends sent me to a local emergency ward in Singapore when I moved in and out of delirium in the middle of dinner. I had been unwell for a long time, but there had been no suitable diagnosis or treatment. I lost nearly 20 kilograms, had the shakes, became insomniac, and most of all, emotionally and mentally unstable. Once diagnosed, it isn't a terribly awful disease; but the number of adjustments one has to make is astounding. Friends and loved ones too, struggle with dealing with the external impact of your disease, and will have to do so for a very long time.

To say it can have a dramatic effect on your life may not be an understatement. Nearly every Graves' patient I know personally has experienced one or all of the above: unplanned career changes, closure or reorganization of business enterprises and any other financial responsibilities, breakdowns of relationships including marriages, and the list doesn't stop there. Some of your partners or friends will think it is not a big deal and that you are overreacting: after all, it's just that a tiny butterfly-shaped gland near your throat has elected to produce hormones at a different rate, right?

It could not be more wrong.

That tiny butterfly-shaped gland near your throat is also inscrutable, and controls many aspects of your life and health that you take for granted. One of the key things it affects is your mood, if untreated or treated inadequately. If you've always been cheerful, optimistic and bubbly, imagine becoming a different person for hours with no warning whatsoever; breaking down crying when your bus doesn't arrive, or when your toast is burnt. If you've always been confident and dominant, imagine becoming daunted by small tasks you do routinely - and being confused as hell about it. If you've always had a superb memory to the point you've never had to write anything down to remember them - imagine forgetting, every single time, the door code to get into your office. Every time you go to the bathroom you get locked out from work because your brain just isn't keeping pace with your body.

Scariest of all: nothing else seems to matter. The business you've built for years. The career you've devoted your life to. The partner you've made plans for life with. It's so necessary to walk away from all of that, when you aren't yourself. It's tempting to think about leaving everything and everyone because nothing's working anymore and you want no part of it. It's easier to quit. Which is also weird, especially if you've never been a quitter.

I tried, and still try, to lead a normal life. I take my meds everyday, but am constantly thinking about what more I can do. Should I drink radioactive iodine? Remove my thyroid gland completely? I don't particularly want to do either especially since neither of them have a sure shot or even a good shot at curing me, and may potentially work out even worse. I want to eat my meds daily and eventually come to a point when I don't need them anymore. Most days, a year and a half on, I'm back to being myself - by that meaning a completely different person from when I got diagnosed. A different person from the one that made bad decisions because I did not know the extent of my disease or what it does to me, when I did not know I had the disease at all. Now that I know how it affects my cognitive processes, my emotional lability, my physical body when the symptoms return when in remission - I try not to notice. Most days, I succeed. Yet it never feels like it's enough.

We still haven't gotten it right. The meds work and then they don't. My body, through no input from me, suddenly decides it loves making my heart jump out of my chest when all I'm doing is sitting in a car. My mind decides it wants to react in entirely unwarranted ways: I'm the life of a party one mind and the next moment I can't even hold a conversation with anyone.

I'm seeking all the best medical help I can get but it's still an incurable disease that affects everyone differently and in different ways at every stage in your life. I don't know if I'll ever be done: all I can do is manage my expectations, and other people's. I know my limits: if I can't work, socialize or be normal, I have to make sure people know it isn't me, it's just this dumb disease. Sometimes I don't even know who I am or what's happening. I've come close enough to get to a point where my levels are supposed to be normal, normal enough to get off the meds completely to see what happens next. But even before we can try that, I'm relapsing - like a damned yo yo - and I have no idea what will happen next. It's a dumb disease.

Just some dumb disease I'll have forever.

Departing Thoughts

1. I must watch too many scifi movies. I'd rarely been convinced of the malleability of time, but these days I measure out everything in two-week units. Time seems to race ahead of me. It always has, now more than before.

2. When I say these days, I don't mean it facetiously. Yes, I turn just 27 in a couple of months, but I feel old, cranky and grumpy most of the time, especially around younger people. This must be what growing old feels like at first, not with a bang but with a grumpy whimper.

3. I must tell my endocrinologist about my worsening memory loss problems. If only I didn't keep forgetting. I will set it as a Reminder in my iPhone, and tell it to alert me when I enter the hospital. I must also set another one to remind me of the same thing as I'm leaving the hospital, because… I really worry that I'm losing my mind.

4. Walking away is hard. One would think you'd get used to it, after having done it so many times, but it doesn't get any easier. It sounds base, but it's when you pack up an apartment with all your physical possessions into many, many boxes and bags, and load them into the back of a car at 5am, that seems to be when reality bores into your thick, numb skull. I'll remember next time.

5. Life has taken on an interesting turn. I've had to scale back on life and ambition in some ways, because I literally cannot remember things, and physically cannot do some of those things. I've undoubtedly become a new convert to the "quality of life" school of thought when it comes to work. That part I'm scaling up on.
   Some new favourite lifehacks: putting my phone on Airplane mode and not turning it on until I get to work, not checking email until I get to work, bringing a book to read in the bus so I spend more time reading books than email, reading and buying more physical books than ebooks, doing things differently (like buying an orange notebook instead of a black one), making it a point to take the women of my family out to lunch every Monday, among other things. All of it sounds trivial now that I write it down, but I'm also at that point in my life where I favour incremental, trivial changes over the huge coming-at-you-with-a-mack-truck changes I used to favour (mostly of the "I'm leaving the country for an indefinite period!" variety)…

6. I've started making some tentative steps back into the world of meeting and dating interesting people. There have been many interesting people. But. c.f. point #2: I'm just older and grumpier these days, so you can imagine how that's going.
   Also, I have transformed into a crazy dog lady whose primary concern in life for the next 110 days is to spend as much time with her quarantined dog as she possibly can. I feel about as attractive as anybody who smells of dog kennels most of the time can be.

7. Singapore has been really good to me since I came home. In some ways it feels like I never really left. I'm surrounded by incredible people in my industry who inspire me and others; I'm around people who really do walk the talk. It may or may not be naive optimism inspired by my homecoming, but I am so excited by what I see around me now in Singapore. My calendar of projects and events has filled up at a good pace. At this point, I have a just nice amount on my plate. It helps.

8. The hardest part about breaking up with anybody is walking away from the memories of what you once wanted to accomplish together. I may feel like I'm losing my mind and my memory, but this isn't one of those that I've lost.

If only it were.

The Places We'll Go

Five years ago, I said: "Ask me again a year, three, or five from now and all I will remember is driving up, around, up, around, up, around, in the swirling clouds as the rain lashed at my windows and I feared for my life, balanced so daintily in this tin can navigating itself on the hairpin road."

Plenty has changed, these five years, but at least this part remains familiar: "Ask me again a year, three, or five from now and I will still tell you the same thing: I’m not sure why I do the things that I do." Then, I was referring to the heady, exciting days of a student who had the chance to criss-cross across the hill tribes of northeast India and investigate the ailments of rural Bangladeshis suffering from leprosy, TB and lymphatic filiarisis. I got to go on the amazing adventure of my life, never really expecting it to end. It hasn't.

Much has changed, but adventure has never left me.

The last five months have been tumultuous. It was the sort of chaos that was ultimately a blip in the universe (though still a large one), and not, thankfully, the sort that led to destruction and the end of the world as I knew it.

In a few days I will make that trip to Kuala Lumpur for the last time. It will be awkward. On it, I will return to the apartment I've had for two years, but haven't lived in for the last five months, and I will assemble everything that I own in that city and that country, and pack it into several boxes. I last packed all the things I owned in the universe into several boxes under far happier circumstances. This time I pack a dog into the car, too.

I don't regret a moment. Life has dealt me a pretty good lot, and I have milked it for what it's worth. So from Singapore to Dubai and the Middle East to London to Kuala Lumpur I now find myself surprisingly, but not that much, in Singapore. I left a Singapore I didn't like very much, and returned to a Singapore I absolutely love (there's an essay in that somewhere). You can't come home again, but you can definitely make it home again, for the first time.

The single life is interesting, but difficult, in equal parts. I haven't dated in such a long time, I really don't have it in me anymore.

The life with hyperthyroid is worse.

I can't remember shit. I quite literally feel like I've lost a major chunk of my former cognitive abilities. It sucks.

How am I dealing with all of this? I'm… dealing. If you know me in real life, you probably can't tell. I've worked very hard to keep it invisible. My heart rate still goes nuts. I drop a ton of weight or I put it back and I drop it again. I am manic and then I am exhausted. I am utterly intolerant to heat, even in an air-conditioned room I am hot. I don't need any medical diagnosis here (I am actively under the care of the medical professionals here, no worries). I just wish I could get my memory back. I've gone from one of those people with super memories to one of those who has to scribble down everything. I don't remember people I've just met (this has never happened before), I don't remember even meeting them, most of the time. It's amazing I can even work at all.

The last five months have felt like a massive blur. I feel like time and space has compressed for me. Or that I'm living in a time warp, splitting myself between two universes. One: pre-illness, pre-breakup, pre-everything. When life was, I thought, sorted. For the time being. The second one, the one I inhabit right now: plagued by a disease that doesn't threaten but bothers me, learning to find my feet again without the woman I love and the life and businesses we had. Breaking up gets more and more expensive as you get older.

I'm okay, I'm good, I'm pretty happy (seriously) — I was just telling someone that I thrive in change in ways that many people don't understand, but I do. Change works for me.

I should be more careful what I wish for, you know? Now there's so much of it I am still finding my feet, but I'm not sure how. That suits me fine for now.

It's just that I hate packing.

The Years of Living at High Velocity

Or how I am not dealing with hyperthyroidism

Ever since I had a vague inkling of ambition, it's been go, go and go.

Occasionally go even further, at top speed. Once I learned to catch the wind, I wanted to fly. I was the weird kid who climbed and used my stroller as a skateboard, even before I could walk.

I don't really know how to live any differently.

In school, I had to run every single track and field event, jump, debate, represent my institution and country at whatever they wanted me to, learn to be house captain, juggle many loves, do more A level papers than I needed, work in a few jobs, travel the world. I was unstoppable, not from the overwhelming middle class Singaporean need for accomplishment, but from not knowing any better.

The simple truth: I don't know what to do with myself. If I do one less thing. I freak out. My mind wanders. I fidget, physically, but worse is the emotional fidgeting that comes inevitably when I do fewer things than I can. (Not emotional as in "I should date someone" but as in "OMG WHAT AM I DOING WITH MY LIFE". Just to clarify.)

The moment I was done with university, I pursued all those madcap adventures I'd dreamed of as a child. Without the restraints of geography and formal education, I shined.

I may not have travelled far, unlike some mileage-racking people I know, but I have returned to the cities I love, repeatedly. I have pushed my body through some extremities. And travelled in ways that I am told are not good for me, in the long run.

Borneo longhouse and then Barcelona, in 36 hours.

Beirut and then Istanbul, in two weeks, by land.

Tamil Nadu, Kerala and Pondicherry and 3000 kilometres of my beloved South India, in a rickety little tin can.

Dubai. Istanbul. London. Dubai. Chennai. Kuala Lumpur. Chennai. Dubai. London. Singapore. Dubai. Sana'a. Dubai. Singapore. Bangkok. Singapore. Dubai. Beirut. Damascus. Aleppo. Adana. Antalya. Goreme. Istanbul. Dubai. London. That was six months of my life in 2008-09.

At 23, you think you're invincible. The world is your oyster. There is nothing you can't do.

At 27, you're a little older now. Older and slower.

I was in Bombay two weeks ago, happy as usual to be there. I was going to go to Hong Kong, then go back to India again. I came home instead to Singapore, supposedly to catch my breath for a day before flying off to Kuala Lumpur, then Hong Kong, but found myself in hospital instead.

I didn't feel so invincible then.

I slept for six nights next to a dying woman, who expended her last breaths snoring like a champ. I figured if you were at that point, you can do whatever the hell you want. Preachers and Christian relatives came to proselytize by her bedside every evening. She grunted.

I had no preachers, but lots of balloons. (The person with the least-threatening disease had the most number of balloons. That didn't seem fair.)

I had lots of love.

I had everything I needed: food, water, medicine, medical attention, visitors, and potassium chloride, attached to my arm through a drip.

Life has a funny way of cutting you back down to size: I was diagnosed with hyperthyroid. My body, like my ambitions, was in overdrive, with so much metabolism that I lost 20kg at one point (not a good thing, btw); such that my hands shook, always involuntarily and sometimes violently; such that my heart raced and slowed and sputtered, often audibly.

No one could tell me what it was until I collapsed at dinner in Singapore, and my face went pale and my body cold, but my head burned at 40 degrees when I got to the hospital. Thereafter, I was force-fed medicine and put through a battery of tests for six days before I was released into the world again with stern orders to medicate and just chill the fuck out.

That didn't, and still doesn't, sit too well with me. I don't know what to do with myself. I'm frequently stumped by people who say they are bored, because I haven't known boredom in many years. The world is out there for the taking — and imma take it! But it was not meant to be, because my body said so.

In my hurry to be better and faster, I'd forgotten to stop — I'd forgotten about stopping at all.

I'd forgotten to spend time on the things that matter most: my health, my family, my friends.

I'd forgotten my body is a vessel that cannot keep up with all the desires of the mind, that needs to be well-kept and well-lubricated.

The hormonal imbalance caused by my hyperthyroidism put my life and what I cherished most about it in jeopardy. I swung, and still do, from sad to happy to neutral in a matter of minutes. I thought, and still do, of destroying everything I'd built up in years in fits of what felt like madness. I never thought it possible for a little butterfly shaped gland near my throat to wreak so much chaos in my life, but it has: my clothes don't fit, they literally fall off me; I went well below the weight I was at 10 years ago; I want to throw things one second and then I want to hug a kitten the next; I can be in the middle of a totally normal situation, such as sitting on a chair in my house, and then my heart starts racing, and slowing, when it pleases, almost as it wants to leap out of my body. If you ask me about the hormonal imbalance caused by hyperthyroidism, I'm very certain that it's on a scale of (old school birth control pill hormonal fallout + PMS + remembering all your sad memories) x 1000. On a good day, I potter about in a haze of drugs and sadness, and somehow manage to muster some of the old spunk left in me, and hold on to it like an unskillful amateur magician for however long I can keep it up. On bad days, I am utterly helpless, tiny things set me off, stupid things stress me out with no regard for proportion — I worry about small things now as though the apocalypse was just around the corner, when every rational bit of me that's left knows it's not, but my body and my mind just cannot compute it.

I miss that the most about pre-hyperthyroidism: my cool. I miss that my superpower of being unfazed by anything seems a world away from me now. I can deal with the months of diarrhea, weight loss, heart palpitations, hand tremors. I can deal with any of those physical things. But not being in full control of my mind is a scary place for me.

Talking to people who know what it's like helps (Thanks Lucian). Medicating regularly and sleeping more has helped, too. Physical symptoms and hormonal imbalance aside, I do not like that I (1) get loopy from time to time (2) have trouble concentrating (3) am significantly slower in terms of cognitive processes (4) forget things immediately (5) feel helpless about all of this.

There seems to be awfully little I can do except wait it out and hope for the best. In the grand scheme of things, I know this is one of those things that's going to be just another quirk, in a couple of months. I know I should be thankful it isn't anymore serious or life-threatening. It just gets in the way, you know? Especially when you are a small business owner like me, I need to be 150% there, 100% of the time. It seems to be my body's way of telling me to slow the fuck down and find a pace and time where I can do the things I want without destroying my body in the process. Health is wealth, etc, and all that mumbo jumbo (even if true, it still sounds funny saying it).

I've decided to chill out. To not let this disease take over my life, or my mind. To do things differently. To sleep before two in the morning, every night. To sleep at least six hours a day. To not subject myself to torturous travel schedules. To be aware of my limitations. This part is the hardest, but I will try.

I'm going to have to take a break from all of this — Singapore, Malaysia, work, empire-building, community-building, nation-building — so I can come back in a better shape to resume all of this, and more.

There's a world of opportunities out there, it sucks that I can't have all of them, right now, but I can at least pick my battles and be darn good at it too.

Goodbye, my crazy high velocity life. Hello, a better, healthier me.