Thursday, June 22, 2017

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


Last post:                                     My Story:                                         Next One
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

  



  

Wednesday, February 15, 2017

How Not To Be A Shit Doctor #1. Never Assume. And Actually Act on the Red Flags.



Last post:                                     My Story:                                         Next One
They slumped down in their seats, as crestfallen as anyone who’d just lost someone would be. I count them as my best friends, yet I had no words to tell them. 

They’d just lost their 27-year-old cousin, no, their elder sister, to a blood clot in her brain that appeared suddenly. I’d talked to many who’d lost loved ones too often before, but when I finally found some words that could comfort them, all I felt was shame.

Shame that I, as a medical student, was part of the establishment that had let them and their family, down. 

Because even as I heard her symptoms mere days ago; severe headaches, nausea and vomiting and numbness and weakness in her arms - even as a second year medical student, I knew she needed a CT scan. Hell, I’d even asked if she’d had one done yet!

Supreet Kaur hadn’t. Not after her GP sent her to emergency, urging her and her doctors to get a CT scan done (she was sent home with pain medications instead). Not 7 days later, as her symptoms worsened, and she admitted herself to the same hospital. Not until 3 days after that, and a fall in the bathroom did they finally find the clot that would end up taking her life.

Supreet on her wedding day.

At that point, after transferring her to another hospital, it was too late.

Investigations are ongoing. Hopefully the hospital will learn, and the next Supreet to come through those doors won’t be failed so miserably.

But I fear that they will. Because Supreet Kaur was too young to get sick. Even her doctors would have thought that. And that may have been what doomed her.

Just as it had almost doomed me.

In my final year of high-school, at the age of 17, I started feeling sick. Really sick. I’d been to my GP, telling him I was feeling bone tired, that I was pale, that I’d had long nose bleeds - that I felt like I was dying. I was sent away, with him mumbling about HSC stress into his beard. When I came back months later with a chesty cough that wouldn’t subside, I was given a course of antibiotics and sent away. Not once, but twice. It wasn’t ‘til 6 weeks after and a change of GP that I was finally given the blood test that would lead me to being diagnosed with leukaemia. At that stage, my marrow was filled to the brim with leukaemic blasts my chances were down to 10 or 20%.

Somehow, I’m still here. But I often wonder whether my family would have been as devastated as the Singhs, the Basras are now, if I hadn’t been as lucky as I was. I wonder if my disease may have been controlled easily, earlier, and without the soul breaking side effects that I still bear today if I’d only been given that tiny investigation by my doctor.

We’re not just outliers though, Supreet and I. Young people are routinely let down by a system which often prematurely rules out diagnoses because of age alone. Young cancer patients often face significant delays in diagnoses[2-4]; sometimes up to and even over a year in length, [1], which most papers agree contributes to worsened outcomes [5-10]. Latent autoimmune conditions such as type 1 diabetes are often ruled out prematurely in this age bracket too[11]; women are particularly vulnerable[12] and mental illnesses such as depression, which affect young people more than any other demographic, are oft missed too.

And I can kind of see why. In medical school, we're taught the typical characteristics of disease. The examples we’re shown are designed to be the classic, uncomplicated, yet unrealistically perfect case. We’re expected, in practical exams, to drill a mock patient for the correct diagnosis, displaying our knowledge of pathological processes, proper examination techniques and the nuances of patient interaction, all in a seven-minute window. In the real world, doctors are expected to do the same, but then also consider the risks of investigations, the costs and capability of the patient to undergo certain tests and then spend the same amount of time writing it all up. It’s nearly impossible to not make mistakes.

But something like this, in a system designed to encourage team-work and one with built with fail-safes, should never happen. There are papers highlighting the problem of stroke misdiagnoses in youth, whose signs Supreet was exhibiting[13,14], one even mentioning the need for “young stroke awareness among emergency department personnel”[15]. 

Why is it that someone needs to die for these lessons to be learned?

Well, it’s happened now. As my friend had to say to Supreet’s heartbroken husband of only 1 year, no matter how much we want, we can’t go back in time and change that.

What we can do is learn. 

To the doctors out there reading this, I know it’s hard, nearly impossible to do what you do and do it well. I’ve only had glimpses into it thus far, and I still can’t fathom how we somehow get from where I am right now to full-time practice. But though it’s impossible to be perfect, and though age can still confound, if only because it’s so much more unexpected, I urge you to at least consider ordering that test when red flags or persistent concerns come up. The one question I'd ask is what side do you want to err on? Though journals correctly emphasise the undue stress that these tests can bring, they forget the MUCH higher cost of missing something vital. 

To the medical students, please, in the midst of all that study, just make sure you know those red flags, if nothing else, backwards and forwards, and remember that age isn’t a tickbox that needs to be checked for certain diseases to exist.

Never. Ever. Assume. 

To the patients, indeed, to anyone out there, understand and acknowledge that doctors often know things we don’t; though a CT scan could have saved Supreet, each one exposes you to 100 times more radiation than an X-Ray, and can increase your risk of diseases like cancer. 

But at the same time, you know your body best. If symptoms persist, keep seeing your doctor, and don’t be afraid of getting second opinions. You’re well within your rights to do both, and in Queensland, Australia you also have Ryan’s Rule on your side – a system that reinforces these rights through referrals to shift managers and a hotline, just in case.

And to the policy makers and hospital directors and heads of staff still here, it’s up to you to bring these rights to everyone, and to also relieve the pressure that brings these mistakes to the fore. Because in a system where there just aren’t enough specialists, where the threats and realities of hospital cuts are coming way too often, where the number of training positions for interns lags so far behind new medical school places, and where nurses routinely work double shifts to barely meet safe nurse:patient ratios, you’re as much to blame as anything else the investigations into Supreet’s death bring up.

I for one, know I will be working even harder. Not just to be the best doctor I can be for those I’ll end up caring for, but to stop any biases or misperceptions I may have from harming them. 

I hope we all will.

For them.
Supreet and her cousin.


Nikhil Autar is an ex acute myeloid leukaemia patient, and current medical student and researcher in Sydney, Australia. He also heads a start-up attempting to make money for charities through what we do in our spare time called PlayWell. You can find his blog – Musings of a Med Student Patient – at www.nikhilthegrizzlybear.blogspot.com



1. Docker MA. Cancer survival gap: Progress stalls for young adults. Wall Street Journal 2005 July 5; Sect. D:1.
24. Eaton G. Article main page [Realtime Cancer portal]. St John’s, Nfld: Realtime Cancer; 2006. [cited 2006 September 29]. Available at: http://www.realtimecancer.org/articles.asp.
2. Young CJ, Sweeney JL, Hunter A. Implications of delayed diagnosis in colorectal cancer. Aust N Z J Surg. 2000;70(9):635–638. [PubMed]
3. Rohrer TR, Fahlbusch R, Buchfelder M, Dorr HG. Craniopharyngioma in a female adolescent presenting with symptoms of anorexia nervosa. Klin Padiatr. 2006;218(2):67–71. [PubMed]
4. Yu CK, Chiu C, McCormack M, Olaitan A. Delayed diagnosis of cervical cancer in young women. J Obstet Gynaecol. 2005;25(4):367–370. [PubMed]
Delay causes worse outcomes;
5. West Midlands Urological Research Group. Wallace DM, Bryan RT, Dunn JA, Begum G, Bathers S. Delay and survival in bladder cancer. BJU Int. 2002;89(9):868–878. [PubMed]
6. Christensen ED, Harvald T, Jendresen M, Aggestrup S, Petterson G. The impact of delayed diagnosis of lung cancer on the stage at the time of operation. Eur J Cardiothorac Surg. 1997;12(6):880–884. [PubMed]
7. Burgess C, Hunter MS, Ramirez AJ. A qualitative study of delay among women reporting symptoms of breast cancer. Br J Gen Pract. 2001;51(473):967–971. [PMC free article] [PubMed]
8. Richards MA, Smith P, Ramirez AJ, Fentiman IS, Rubens RD. The influence on survival of delay in the presentation and treatment of symptomatic breast cancer. Br J Cancer. 1999;79(5-6):858–864. [PMC free article] [PubMed]
9. Tjemsland L, Soreide JA. Operable breast cancer patients with diagnostic delay—oncological and emotional characteristics. Eur J Surg Oncol. 2004;30(7):721–727. [PubMed]
10. Forbes LJL, Warburton F, Richards MA, Ramirez
11. E Laugesen,1,2,3,* J A Ƙstergaard,1,2,3,* and R D G Leslie, Latent autoimmune diabetes of the adult: current knowledge and uncertainty, Feb 2015, Diabet Med. 2015 Jul; 32(7): 843–852. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676295/
12. Shawna B Christensen, MS,1 Mary Helen Black, MS, PhD,1 Ning Smith, MS, PhD,1 Mayra M. Martinez, MPH,1 Steve J Jacobsen, MD, PhD,1 Amy H Porter, MD,2 and Corinna Koebnick, MS, PhD1, The prevalence of polycystic ovary syndrome in adolescents, Fertil Steril. 2013 Aug; 100(2): 10.1016/j.fertnstert.2013.04.001., https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3813299/ 
13.  Kuruvilla A1, Bhattacharya P, Rajamani K, Chaturvedi S., Factors associated with misdiagnosis of acute stroke in young adults., J Stroke Cerebrovasc Dis. 2011 Nov;20(6):523-7 Abstract available at: https://www.ncbi.nlm.nih.gov/pubmed/20719534
14. Luciana Leon8, Fatima Pantiu, Julieta Quiroga, Pablo Bonardo2, Claudia Uribe, Julieta Mazziotti9, Alberto Zinnerman3, Alejandra Martinez, Andrea Sotelo10, Lorena Jure11, Pedro Nofal1, Eduardo Bendersky5, Luciano Alberto Sposato4, Patricia Riccio6, Ricardo Reisin7 and Manuel Fernandez Pardal2, Misdiagnosis in Young Patients with Ischemic Stroke, April 2015, Neurology April 6, 2015 vol. 84 no. 14 Supplement P7.122 Available at; http://www.neurology.org/content/84/14_Supplement/P7.122


Tuesday, February 7, 2017

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



Last post:                                     My Story:                                         Next One
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.