Thursday, June 29, 2017

The Truth About Medicine... Most People In It Think It Sucks. But There Are Ways We Can Fix This.


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The day I got into medicine, was the greatest day of my life. 

I'm sure many medical students and doctors would tell you the exact same thing...

I'd always wanted to study medicine. "What better job was there?" I thought. You could save lives and live in relative comfort your entire life. I'd get to emulate my childhood hero growing up, Captain Hawkeye Pierce from M.A.S.H. 


But after leukaemia struck my life... it became personal. 


I wanted to help people as I'd been helped. It was my doctor's words; that "The Good News Is You're 17 and You Have Leukaemia, but the Bad News is You're 17, And You Have Leukaemia..." and his actions that got me to believe that I actually had a chance in this... It was another patients' words the day before my transplant that really sunk in, and changed my life. Imagine being in a position to do that for people everyday!

My first day in medicine was one of the most joyful of my life. 

I was so excited to finally be in a position to give back, and so delighted to be alongside so many other people who cared just as me. 


But as time went on... things changed. 


For me, and for many of my classmates too. 

As I progressed through the course, I got more and more burdened with work, and more and more indoctrinated (pardon the pun) into the collective Group-Think of modern medicine. One which emphasised speed over accuracy, marks over competence. One which measured success through KPIs such as reduced wait times and greater efficiency rather than reduced morbility and morbidity, and higher patient satisfaction and involvement. As everyone in this profession does. 

Doctors have one of the highest rates of depression of any profession. 

They are highest in suicide. 

They have the highest rates of alcoholism too. 

1/4 medical students are majorly depressed, and more than 1/10 will think about suicide in any given year. 


And this in a population who are most educated about mental illness, and the fact that they are illnesses, not just an abstract constructs or "excuses," as many still widely suggest and believe. Somehow still, amongst those with depression or severe symptoms of depression, only 15% of medical students actually get help... For doctors... the rates are even lower

Why is this happening though? 

Aren't these people being paid heaps? 

Don't they know the risks of the disease, and how altered biochemistry can alter your very mental state - your very person? 

Well, there are many reasons why. 

This article gives great explanations as to why. 

Various personality traits and attitudes make doctors more likely to suffer from depression. 

Perfectionists, narcicists, compulsiveness, martryism, and disparaging views of vulnerability are all commonplace. Facing death, watching good people suffer, and losing the battle over and over again also burdens doctors. Burnout from stress affects 45% of doctors, ladies and senior physicians in particular. And as this article puts so poignantly, Osler, the founder of the first American residency program, advocating for steadiness in physicians, was perhaps the largest contributor to all this... 


Many doctors feel that showing weakness is a failure on their part. 


If they're not steady under pressure, how can they serve their patients? 

And that can be a tough burden to bear...

400 doctors take their own lives in America alone.
An entire medical school's worth...




Junior doctors and medical students have similarly sky-high rates of depression and suicide ideation (the 10% figure is a conservative estimate; studies in my nation show , but have the added pressure of exams and the weight of expectations on their shoulders too. 
Furthermore, other factors, such as living on their own for the first time, often overseas for many students (where the added pressure of maintaining a steady income is another burden), high levels of student debt, and the sheer pressure of the course and succeeding itself plagues many students. 

Many of my medical student and junior doctors friends complain about many of the above stresses. Many feel medicine takes over their lives. In a time where they should be out and enjoying their life, many students, as well as doctors, regret not enjoying life more. And many feel disillusioned too. They feel they were misled about what medicine actually was. About the impact they have. About the difference they make. So many of my friends express this in particular. But the toxic, competitive hospital environment, where specialty spots are limited, the medical heirachy is emphasised (and perpetuated by older doctors in an "If I went through it, they should too" manner) and bullying is rife, also pushes many young meddies over the edge. 

Very recently, in my country, Australia, 3 junior doctors took their lives within one week

THREE. YOUNG. LIVES...

With so much to look forward to.

In. One. Week. 

2 people I knew took their own life last year. 
1 was an old school mate of mine. 


What can we do about it then? I guess that's the question that remains. 

Well, dealing with how doctors perceive themselves and mental illness is one step in the right direction. 

Letting doctors be human



This great TED Talk, one of the highest rated of all time I believe, discusses the expectation of doctor perfection, and how this counter-intuitively actually worsens patient outcomes. 

When doctors feel they have to be perfect, that their mistakes are their fault, a great burden is placed on their head. 

It's important to be competent, don't get me wrong. But this unreal expectation of perfection is what, as Brian Goldman points out here, is only harming doctors more. 

We're not learning from it right now. There's no mandatory reporting of issues or near misses in hospitals. More recently, at a quality and safety lecture I attended, I learned there was one in our hospitals in my state in Australia, but that it was under-utilized, and something feared by doctors, as opposed to the learning tool it was intended to be. 

Something as simple as a place for doctors to confess mistakes, and seek sympathy from other doctors, could change the lives of hundreds of thousands of silently suffering, perfection seeking, burned out medicos. And it could improve patient outcomes too. 

Of course, it needs to be a done in a sensitive manner. Perhaps confidentially, with identification being made impossible. Though it's horrible that some die due to lapses in doctors' concentration, as pointed out in this article, overworked doctors, facing physical and emotional stress, are less competent ones. Hundreds of thousands will die due to medical error this year alone - medical error is estimated to be the third highest killer in the American medical system. 

The numbers are alarming, to be sure. But not learning from mistakes, not making diagnostic/prescribing/treatment processes better, and not giving doctors a place to vent, and relax, is only going to increase this number if anything. 

A great TED talk by a very interesting man - Atul Gawande (highly recommend his books on medicine and how to fix it), discussing a simple process which reduced mortality in surgeries by as much as 40% - a checklist. These little innovations and improvements are necessary to accomplish the end goal of saving more lives and reducing suffering!  

Coping with loss


But reducing medical error alone isn't the only way we can ease doctors' strife. 

Loss is something many doctors have to face. 

And it's a big contributor to doctor and medical student dissatisfaction. 


I can only imagine how going to work everyday, knowing that you're going to witness suffering, pain and death can be soul-wrenching. I certainly do feel disillusioned when walking through wards and seeing the same story, of a seemingly nice person, suddenly finding their health deteriorating, and then, in most cases, never reaching their whole selves again... Indeed, my first brush with depression was due to loss. 


But if there's one thing I wish I could tell all doctors... It's this.


You can ALWAYS make a difference in peoples' lives!


No matter what their position, no matter what their outcome.


The things I remember, and thank my doctors for aren't their medical decisions or prowess, but rather those times they went above and beyond the call to talk, treat and look after me. I'll never forget the first words of my doctors, the words that made me realise that I DID have a choice in how I viewed all this... The words that helped me resolve to, at the tender age of 17, focus on what I COULD control rather than the horrible things I couldn't - including death. I'll never forget the time one doctor decided to chill in my room while I was hallucinating and horribly weak. Having someone there to ground me made a huge difference. I'll never forget the letter he wrote to the medical board that's allowing me to live my dream today and I'll never forget the time I walked into my doctor's room instead of onto the railway tracks, and I'll never forget the feeling I felt at that time - that I was being cared for. 

I can never thank them enough for all of this. 

And those things... they took nothing from them, mere moments if anything... and yet they've changed my life. 

And those small things... they could be done by anyone, at anytime too. 

And they mean the world to people.  

I have friends who've passed away from this disease whose families we stay in touch with. They say those little moments, the barbeque we threw and invited them to on a whim on Father's Day, the game of snakes and ladders we played while their father lay on a deathbed smiling, they're things they'll always remember.




It needn't be as large as this. A simple display of humanity in an experience lacking any could mean everything to someone. Something as small as a glass of water, a cheery face, or a hand to hold can and does change lives.

They needn't be done only by doctors too... My nurses were the people I was closest too in hospital. They, the receptionists and my social workers have been rocks in torrid waters for me countless times. The words Patch Adams, the world's most famous clown doctor said to me once rings true to this day - "Do you stop being a doctor once you leave the hospital?" Are good deeds and gestures limited to medical personnel? Could similar gestures on the outside help people just as much as in hospital?

All of this goes to show that no matter who you are you MUST take every opportunity to try and spread this cheer in the world. It's what makes all of this worthwhile. It's what makes your job a profession. It's why most of us got into this in the first place.


But this isn't the only solution.

It's just a job.


This great article goes into another way of dealing with burnout and dissatisfaction - dissociating from it all and realising it's just a job.

It's an idea that's frowned upon, to say the least, by most medicos. The idea that we do this to help others underlies everything we do. The Hippocratic Oath we take precludes such apathy and nonchalance. But as Dr Profeta argues, this approach leads to a near zero burnout rate in ED, which usually has attrition rates upwards of 50%. Sure, smiling and nodding when required helps, but it's not necessarily helpful in the big picture.When Profeta's son was diagnosed with leukaemia, he dropped everything, and even left his post in ED, to be there for him. 

Perhaps this is the best way to deal with it for some.

It's not easy to be there for people all the time.

It may well be the best way to deal with it overall... In a job where you have to face human suffering every single day, taking a step back may be the only way to cope.

But at the same time, beneath it all, we are all human. We can't help but care. And I'm sure Profeta himself would agree, when his son went through his ordeal, he would have been spared much suffering if he had a caring, empathetic doctor. One who would keep him company, talk to him at his lowest, and inspire him to keep going even when times were tough. One I was lucky enough to get myself. 

Sure, there are other things we can do. 

Learning to take breaks, and fostering healthy habits are other great measures we need to take. 

Talking about it openly, and sharing stories is one great measure that's already making waves. Top down changes and the acknowledgement of there being an issue is another. Australia's AMA is seeking to further this, and has also taken further steps to increasing dialogue between doctors and medical students to fix the toxic culture. One of the most important things, I believe, is to get students to ask eachother, "R U OK?" 3 simple words that have and will always save lives. If people can look out for eachother, and be frank about their shortcomings, perhaps then we'll have less doctors and future doctors suffer. 



One of many amazing stories shared on the Australian Medical Student's Association's Facebook page seeking to break down the stigma around mental health and get at risk students the help they need. I took part in this campaign too. My one's at the bottom. 


But whatever the measures, it's clear that something needs to be done. That talk needs to become action and that the most isolated among us need to be heard.

I for one am trying to do my part. I hope you do yours too. 

And for those thinking of doing medicine - I hope this doesn't scare you too much. 
It is an amazing profession - one where you can make an impact every single day of your life.

It is tough. 

It is grueling. 

But it's so worth it too. 







Thursday, June 22, 2017

Depression is Worse Than Cancer. How I'm Finally Beating It.


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So. A lot of you know, I've been pretty down recently.

Cancer's tough, I'm sure you can appreciate that. I did for sure before starting treatment. But that fear, by acknowledging it, I somehowturned it into a positive... It meant I wasn't kidding myself. That when the tough things came, which I knew they would, I wouldn't break, but rather look at why they were doing this to me - to get me better. It'd allow me to be human, cry, grimace, scream in frustration and pain when I needed to. Break down a few times. But in the end... it left me only one way to go. Up. A talk I did on this topic - click here to see that!

The thing I couldn't forsee though was how tough life after cancer would be. Chronic graft versus host disease is what I have; the upshot of having someone else's immune cells in you to attack the cancer was that they'd also attack you.
I've got one of the worst cases you can have of it without being terminal. But the major thing that gets me still, even to this day, is the cramps.

They strike at anytime, but happen pretty much everyday, and over time, they've only gotten worse.

There wasn't a night where I wouldn't scream a few months ago. I still do at times. I often can't do something as simple as rolling around in bed without every muscle in my body - from my calves to my forearms and chest, to even my jaw, neck and forehead - firing all at once.


The stories are true. When I cramp, I do turn into a middle aged white dude.


I lived my life one cost benefit analysis at a time. Was it worth getting up to going out to catch up friends if it'd leave me screaming for days afterwards? Was worth it to get that glass of water even though my throat was parched, if it’d induce a round of cramps? Was it worth it to get up and pee, or should I just scream and wake my parents and brother up to bring me the pee bottle when I was busting at 2am?

That was my life. It has been for the last 2, well, now I think about it, nearly 3 years.

But something I didn't notice at the time, despite all the writing I've done about it, despite me telling everyone else to go out and get help for it, despite all the talks I've given and people I've talked to, was that I was going through depression too.

It's hard to recognise it. I'd been through it before...When I lost a friend to a similar disease, a man who left a baby girl, wife,and devastated brother and parents behind to something I'd beat. I couldn't see a point to all this. All I did was scroll down Facebook, watch YouTube videos, unfeeling, unwilling to even move out of bed for weeks, months on end. I did get through it...
What helped was something I didn't realise I needed to do at the time, talking about it, with Dad. And eventually, I did realise I was going through something and found a way to give myself purpose again. To honour and respect my friend, John's, memory, by doing what HE would have wanted for me anyway - being as happy and successful as possible. And working as hard as I could so others wouldn't suffer and John and his family did. In any way possible.

I did all that... I'd felt the same feelings, but even then, I didn't notice what I was going through 'til one night, when trying medical marijuana funnily enough, I realised that I hadn't laughed, or smiled, or felt comforted in a while.

And I hadn't. I really really handn't.


Actual images of me in a down spell. It's true.. I do become whiter when I'm depressed. 


The cramps, the pain I was feeling was affecting me, I know now, moulding me, shaping me, into a person living in fear, and without hope for a future, or even a night without pain.

I was living in a fog. One that'd slow my mind down. Making it difficult to concentrate, or muster up the courage to even get out of a chair, yet alone think about my research, play a game of poker, or go out with friends. Combined with cramps that would contort my hands into the semblance of a still spider, and leave typing out study for the toughest year of medicine and looking through articles a near impossibility that I had to make possible, One. Awkward. Finger. At a time... I felt I was stuck.

My doctor didn't make it easier. She, possibly out offrustration at my constant "pestering" of wanting more than await-and-see, maximising conformity whilst minimising comfort and reliefapproach, told me at one point that there's not just nothing they could do for my situation, but that there never would be. That research into a non-specific symptom like cramps will never happen. That she thought I'd eventually require an intense, risky procedure for my disease, one that showed marginal benefit in me and one that took away my left eye. That my suffering would never end.

She'd prematurely confirmed what I was already prone to feeling in my mind - that I was doomed to a half-life, filled with struggle, pain, failure and eventually death. Without once referring me to a pain doctor, or a rheumatologist, or immunologist or ANYONE for a second opinion.
I'd looked up everything in Graft-Versus-Host-Disease and cramps myself. I knew that there wasn't much out there…

But her words were the nail in my coffin.

Confirmation of what I was thinking in my mind. Fuel for what I was already feeling, what many do... that death would be much easier than living.

I'd made plans. I fantasised about it at the peaks of my pain. That an end around the corner was in sight.

JUST THINK ABOUT THAT FOR A SECOND.

How sad do you have to be to feel that?
It isn’t just me who’s felt this though. Many who are depressed, anxious, or going through tough times do.

Imagine living that way for a year... Or for your whole life..

A talk I did, on the 5 Biggest Myths about Depression. 


Now think about this.

I'm a man who, at the age of 17, when told he had a 10-20% chance of SURVIVING 6 years ago, managed to find a second way of looking at things - an attitude that would lead to me fishing for sharks AFTER MY FIRST, MOST INTENSE CHEMO, that would help me smile even in the depths of hell itself. I’ve accomplished so many things… I've completed a 200km bike ride 2 months after 15 rounds of maintainence chemo, I’ve flown off to Vegas to win tens of thousands for myself, and thousands for charity, against the best poker players in the world, but most importantly, I’m a man who found something to smile about TEN MINUTES AFTER BEING TOLD I'D RELAPSED, AND THAT PERHAPS PALLIATIVE CARE WAS ONE OF THE BEST OPTIONS TO TAKE...

And yet I still couldn't outthink depression...

I tried to. Many times. I applied my own thought process - I took a step back and fought off my doubts and fears one at a time. I told myself that "when I was in pain, just relax, and take it easy," that "It's only temporary, and that in the big picture, it's well worth it for the things I enjoyed." that I should "Watch Tom n Jerry and just chillax for a little bit." Anything, and everything, to pull myself out.

But when the pain came... when that fog struck... when my hopes of a good day, or just a break from it all would get dashed... all those self-assurances, all those strategies would fly out the window, and I'd be brought back into hell.

I say this to assure you, that it's not something you can just outthink sometimes.

I say this to show that you can and should get help, for yourself or someone who you love.

I say this because you do deserve a way to get through this. A way to deal with depression.

I say this because, as I’m so glad to announce... I recently found one.

For so long I suffered, silently. I didn’t even recognise that that fog, and my pain, was worsened by depression… And I’m someone who writes about it, has looked deeply into the hows and whys as it all, I’m someone who’d been through it before, and lifted others out it too.

The first step I took to get there came at a critical juncture.

I was at the lab one day, just a few months ago, pushing my body as hard as I could to get through the day’s work.

It was Friday. And I planned to reward myself, by going to a poker game in the city, one I’d been preparing for, for some time now.

I didn’t wanna keep going. I hated this. The pain. The dependence. The lack of ability to even move at night without more pain. And I seriously thought about lying down on the train tracks and ending it.

But as I left the Ingham Institute, I saw the cancer clinic I’d gone to for a long time, a part of Liverpool Hospital.

I remembered my first doctor. The words he said to me at thestart. How he’d saved me before.

And I went to him.

And thank God he was there.

He sat down with me for a bit. We talked. He asked, “Are you just over it?” And I couldn’t help but break down in his arms and say, “Yes.”

He got me to go to emergency.

I’d asked, and been referred to see a psychologist weeks ago, but the referral papers hadn’t been sent by the receptionist yet. I’m sure people have died waiting for that red tape to be cut.

He made sure I saw one straight away.

And after talking to one, they suggested that I wasn’t in immediate danger, and I wasn’t despondent or anything. But they suggested putting me an SSRI (an antidepressant) while I waited to see a psychiatrist at length.

I pulled out my phone, looked up those treatments I’d founddespite my doctors’ insistence that I wasn’t going to be helped, and found one that helped in a similar disorder to mine – fibromyalgia. I asked her if she could prescribe that instead.

Its name is duloxetine. After day 2 of taking it… My pain reduced significantly.
I’m talking 90% significantly.

The cramps were still there, and they were still debilitating, but they didn’t impact me as much anymore.

But just as important as my medications was me talking about it to someone. A pretty cool psychiatrist, one who’s been in the business for decades, one who has similar aches and pains as me, and one who gives remarkably sound advice for how to deal with situations.
But the most important thing I did was, when I started feeling bad - even though I found something that reduced my pain, the pain was still bad sometimes -  I started writing down what would get me back up.

Before I got help, I would reflect on myself, and try to give myself advice for getting out of there. But not only are you more affected, more “triggered” by words, and events (I know some of you may scoff at my using this word, but you really are less “able” to control your emotions when you’re down) when you’re down, you also forget not just what things, or thought processes would get you back up, but how feeling up even feels like. You feel trapped. Or else, your mind makes you comfortable at this low level.

Me writing down, in a short, bullet-point format (as opposed to these chunky blogs), in a place I could always go – Google Documents – allowed me to remember all the advice people, and I myself had given to get through rough patches. Here it is if you wanna do it on your own - feel free to copy some bits (though I highly recommend seeing someone you can feel obligated to listen to and fulfil these goals to add some positive pressure and professional opinions into your own case!)

I have it organised under various headings. For instance – I’ll have a heading, “How to bust out of down spells” and actions to take to help do just that.

Under that, I’ll link a YouTube playlist of songs I have that fill my body with drive.




Watch out. Pumping up is very likely. Use at your own discretion
I’ll remind myself, that though there’s pain in starting to exercise, or even getting out of bed, I feel SOOO much better about myself after I complete a workout… I cramp so much less once I start moving a bit.

Under another heading, “Anxiety”, I’ll have tips of things that could distract me when I simply can’t fall asleep. I’ll have distractions – Tom n Jerry, I remember once, when I was having a panic attack, when my mind couldn’t stop thinking about anything and everything – that silly, cathartic, simple show slowed my mind down. It made me laugh.

I’ll also remind myself to stop catostrophising,” a buzzword my psychiatrist mentioned recently, which pinpoints exactly what I’d do when facing a health crisis. Though I’ve had bad experiences with doctors recently, and though researching my own disease has helped me when doctors have all but given up twice, the doctors in emergency do know what to do when someone has seratonergic syndrome. They can diagnose and treat infections. There are still many, many great doctors out there, for all eh ones in between.
And I also remind myself to be human. When going through anxiety, being told to “Just stop worrying,” or to “Just go to sleep,” is often more frustrating than helpful. What’s really needed is a huge and comfort, as this puts perfectly. But in tackling the root fears beneath my anxiety, my fears that my disease is impacting my mind, my mistrust of doctors and fear about my own worries – I knew how to deal with it. I’d done it for some social anxiety I had before. I knew I could get there, but that it’d just take time to become the “old me” who could let things go.
The document is here – for you guys to view and perhaps construct yourself.
It’s still under construction. It always will be. We can always improve.
Interesting to note, these are all things I’ve written and advised you guys, my readers, to do before.
But just as important as that, for me, was making sure that I could recognise the signs myself, and give myself a cue to get to this document.
To do that, I decided to conduct some self-CBT – cognitive behavioural therapy; the art of using physical cues to help people use refined thought process to tackle mental illnesses.
I found a symbol of me – and I carry it around with me all the time now.
A shark tooth.


an actual, 100% legit picture of my chest. Taken from: https://www.etsy.com/listing/235077778/mens-cross-necklacemens?ref=pla_similar_listing_top-5


Not only is it a physical cue that’ll prompt me to go back to that document when I can’t get out, not only does it look cool – it also takes me back to some amazing times I’ve had in my life. The primal joy of pulling up my first shark while fishing. The feeling of contentment after emerging victorious in a large poker tournament I played last year (a shark is a good player in poker). Whenever I grasp it, I can’t help but smile.

And together, with me regularly seeing someone, and along with some medication, I’ve been able to get myself to a place where I can truly say, “I’m happy,” much more often.

As I, and you deserve to.

You, reading on, or your loved ones, or patients, or friends, may not need those medications. In fact, we as a society are probably over medicated. Low grade depression is more effectively treated through psychotherapy, talking about it, and it comes with lower side effects too.




Unfortunately, those who do need the meds, are those least likely to be on them.
It’s hard to pull yourself up when you’ve been down for so long that it’s your whole life.
But believe me – by giving yourself someone to talk to, and by using a system, similar or dissimilar to mine – you CAN get there.

And I hope this helps you do that.

Feel free to message me with any questions or anything really in regards to this. I’m always here to help.
nikhilthegrizzlybear@gmail.com

  



  

Tuesday, February 7, 2017

I'd Lost All Hope. Here's How I found It Again.



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I know I've said this a lot, but last year was hell. 

I embarked on the hardest year of med school with an already debilitating side effect - the cramps. What did I expect? 

But I didn't bank on that last one, the cramps, getting even worse... I didn't think it could. 


But it did. Spectacularly too. 


I started off the year a little worse for wear already. August 2015 marked a third, new tumour popping up in my ribs and September meant a month's worth of this chemo drug. The cramps were already killing me. Not a day went by where I wouldn't be hunched over at night after getting up to get something from downstairs or go to the bathroom. Not a day went by when I wasn't woken up in pain. 

But though it was already extensive too, affecting my legs, arms, chest, abs and back... In 2016, they not only got more intense and more common, they also spread to my neck, my jaw, even my cheeks. They affect my breathing, my talking and my eating now, and often too. I couldn't type, nor concentrate, nor even keep my eyes open as I studied and got through the year. I spent every night of the last few months in particular not moving from my chair or desk, asking for a bottle to brought to me when I needed to pee, in fear of the pain igniting. 

But  what crushed me even more than all that was another change. 



My doctor. 

Old age affects even the nicest men. But I'd had doctors fill in in my care before, so when Dr D, the man who'd taken care of me during my transplants and who'd secured the experimental drug that's kept me alive, left, I felt I was in good hands. 

It's not to say his replacement was incompetent. She knew her stuff, she must have to have made consultant. But it was her manner that left me desolate. 

See, no-one has much of a good idea of why cramps happen in graft versus host disease (GVHD), the side effect of the bone marrow transplants. All they know is that it happens in many patients, and probably more than what's represented in trials too. I've got a severe case, no doubt. But I do have the benefit of a bit of medical knowledge. So as I used to with Dr D and the other doctors who've looked after me, I brought up things that may have a chance of working in consults. 

It's not that she knocked them, or even a suggestion of them, all back that sucked, it was how she did it. 

When I'd suggest something, it seemed like it was her mission to pull down any suggestion of them working. And it's not like they were random things I'd seen in a blog or on someone's Facebook Page either. They had scientific merit, with decent evidence considering the rarity of the disease behind them too. A few were suggested by doctors we'd gotten second opinions from. She often hadn't seen those papers. And this blockade wasn't just limited to the cramps too. When I had a crisis in my lungs, to which I'd sent her a paper (multiple papers in fact) of a harmless drug, often given to children for asthma, which could help me out, she dismissed them. It took me directing my respiratory doctor to Google the paper in an appointment, which I'd emailed her months past, for the team to start me on it. My lung function improved promptly after.

This happened for months on end. And I only got worse and worse on the cramp front. And it culminated in an appointment late last year where she told me that there was nothing that would fix my cramps. That no-one could ever study it, as it was something hard to isolate a clear cause for, that no-one would ever study it. That there would never be a cure. That she suspected, and was fine with waiting for, even my entire GVH disease to progress to a point where I'd need a therapy again which is the most likely cause for one of my eyes going blind (the other eye nearly went while on it too).

She literally said that. In those words. For some reason, most likely to stop me from bringing up things over and over again, she seemed obsessed with wanting me to know this. (I'd understand, maybe, though not really, this is done with this crushing intensity obsessently and unnecerily by doctors, if I was terminal or something... this was just... unnecessary. That's for another blog post though...)

That in and of itself is enough to break someone. To make them wither away. To induce depression. I'd felt, the entire year, for the first time, that this disease had finally beaten me. That all my hopes, dreams and ambitions were gone. That I'd be dead by 30, and suffer All. The. Way. Down... losing friends as I faced year after year of setbacks, and as they moved on, over and over. Losing opportunities as I found myself unable to even find the spare energy to write out applications for thing that'd only take me 10 minutes when healthy. Losing myself. 


I tried to find ways around it. 


I'd go back and look at my own advice, and take a step back and try to find ways to cope. I told myself that it would end in time, that I just had to wait it out, that this or that treatment I'd tried would take just a bit more time to work as my nerves healed. I forced myself to go to parties when I'd be gasping for air trying to get up so I could see friends outside classes and tutes. When I was in pain, or when I started to cramp at night, I'd give myself a break and not study at all - even in exam periods - so I wouldn't get frustrated over and over again as my fingers curled up and spasmed painfully. Sometimes I kept going just to show myself I could. 

But irregardless of that, when I was left at night, and more and more often, during the daytime too, screaming, crying or speechless from pain that would constitute my entire existence, I'd be drawn inevitably back to the doom that was in my mind...





But there was another layer, another contributor to this too. 



My family. 

Those amazingly beautiful, angels amongst human beings who have been there for me in the hardest hours of my life... As I was told I was diagnosed. As I was devastated to the core again when I relapsed. As I made trips in and out to ICUs, as I struggled to cope with loss, as I tried, over and over again, to get back up on my feet after falling incessantly to the ground.


They were also responsible for the final nail in the coffin that was my existence. 

They believed I wasn't trying enough thing on the side - alternative medicines, herbal remedies - to help me break out of this condition. It had been a source of tension in my home for years. They'd find things from the weirdest corners of the internet and bring them to me, insisting I try them. I was happy to try things, as long as I knew they were safe, and as long as I had the energy.
I've been on high doses of various vitamin supplements, and tried an oil specifically for the cramps. I've had a few homeopathic remedies, one of which left me slurring my speech for a few hours (the first signs of a reaction I'd had earlier that caused me to seize, hallucinate and end up in ICU for a few days), things like wheat grass juice and soursop juice (which may well have exacerbated the peripheral neuropathy that underlies my cramps) too. I've gone vegetarian for a month in the past, I'm vegan as we speak, I'd given up sugar for a bit after my second transplant. I take tumeric pills daily, and vitamin E and B supplements still. I wanted, after all this, with every man and his dog having a suggestion as to what'll fix meI'd put some faith in some of these and been let down, but that wasn't what was killing me. 


It was the fighting about it.



All of last year, they insisted I wasn't doing enough to get better. 



They kept telling me to find a way out. 


And having finally succumbed to my doctor's insistence, and after my thorough searching through the literature and finding a grand total of less than 10 articles mentioning it as a symptom and only 1 describing it alone, I believed there wasn't. 

But to have to say... to have to say it to them... I can't begin to describe how much that decimated me. How much it sapped at my existence, my drive. How thoroughly it convinced my very self that I was doomed to a half life... one no-one would wish on others, one that made no sense to continue wanting to live... 


And I was like that for over a year...



But a few weeks ago, I'd just had enough. 


I hated that feeling. Of hating myself. Of the cloud of doom that shrouded me constantly, or lingered in the shadows by my side. Of the pain too. 

And in my desperation, I thought up anything, everything that I could do. 'Til that moment, the strategies I'd set when I took that step back and examined all my options - the thing that got me through the chemos - were all designed to cope. They all had this underlying assumption of a cramp coming on to be wary of.  


So I thought about what I'd done in the past. 



And of all the things I'd had to deal with, the way I combated my relapse shot out at me as the solution. 

When I did relapse after my first bone marrow transplant, and was told I had a less than 10% chance of survival, I decided, in addition to getting my head around the likelihood of death, in addition to deciding I'd take every opportunity to choose to be happy, to go out and put my year of medical training to find anything and everything that could help me out in this, that could improve my odds. 


It was the only option that made sense, when I took a step back and looked at my predicament...

Despite the even lower chance of survival, I decided to look at that thing I had on my side in this struggle as a weapon. The something I didn't have at 17, the medical training I talked about - gave me another dimension of hope and self-belief for when I found something that I knew was out there, somewhere. When I did, I'd be able to not just believe that my doctors wouldn't be doing all this for a reason, as I had when I was first diagnosed and when I faced my first bone marrow transplant, I'd see WHY it would succeed too. And I found it. When I did, I could TRULY put my all in it. This is the result. 




I knew at that moment what I had to do. I went out and searched. This time, I had not one, but two years of medical education on my side, including stuff that seems very fateful - training and knowledge of what goes on in the neurological and muscloskeletal system. This time, I looked at not only cramps and neuropathy in my disease. I looked at it for ALL of them. That search is still going on... And I've compiled all of it into what could eventually become a publishable review, or at the very least, a case study. If you yourself are going through some, or just interested - feel free to check it out. I'm happy to answer any questions - just know, you should always ask your doctor which one of these is right for you. I've included side effects for many of them, but not all (they're just notes with links to more detailed descriptions - all of which I've read) - just making sure I mention that!

Alongside all this, I thought deeply about the cramps. I outlined every single way it could be going on in me. And I looked at solutions already out there for them all. I'll go into the potential ones too soon, I'm sure. I'm so obsessed in such a healthy way, thinking about them keeps me up at night.


And now... for the first time in 1 and a half years, I finally feel like I'm actually gonna get through this. 
I know that even if none of these work, there are others out there I've still gotta find. 
I know that even if there isn't, there may be one in the future.
And even if there isn't any, at least now I'll be satisfied I gave it my all.
And when I tell myself I can still do things,  despite it all, I'll believe it. 

This chronic illness is another beast of its own. The very nature of it being something that could, or will haunt you forever, kills so many of us inside. 



This has taught me the power of hope. 

For the first time in a while, I'm not thinking I'm doomed to failure, death and pain my entire life. I feel like there is a future period, not one that leads to my death, or my taking my own life. I feel liberated.

But it's also taught me that even if there isn't any, you can still live life on your own terms. Sometimes it's proving a doctor wrong that motivates you to strive to be more. Despite all she'd done to bring me down though, I personally am not aiming for that... instead I'm showing  myself that I'm not limited by anyone or anything else but me in doing this. Sometimes it's just getting sick of it all, like I had too. 

But know - there is a way out of that shroud of gloom, and doom. You can break free. I did it the hard way, I kept trying to do it all myself, despite me insisting that you don't need to and shouldn't. You don't have to - talk to someone - a friend, a person who's literally a professional at this stuff, who can't tell anyone else about what you're going through (a psychiatrist or psychologist) - or ME if you feel like no-one's there or I'm perfect for the job. 

You deserve to. You deserve to be happy. People do want the best for you. Even if your mind tells you otherwise, know that there will always be at least one who does. ME.