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. 

Read more

Dealing with Depression.

Last post:                                      My Story:                                         Next One:
My uncle and his family had come over to visit a few weeks ago, and in the middle of some idle chit-chat, Dad asked us a question.

"What gives you happiness?"  

After a few moments, and a few awkward looks around the room, everyone simultaneously blurted out their response.

"Success," said my uncle.

"My children," said Mum.

"Gaming," began my brother, "And pizza." Typical Nirav.

Dad looked at me expectantly. He'd already asked me this a few weeks ago, and I knew why he was asking it now. One of my family members, let's call him Steve, had just been diagnosed with depression - and Dad thought my answer may just help.   

"So, what's your answer, Nikhil? What gives you happiness?"

"I do," I responded.

Everyone was taken aback.

After a few years of bad news, pain and struggle, my perspective on all this was a little different. I'd realised that you always had a choice on how you viewed your life.

"I mean, it's your brain. You control how you respond to things. And me - I choose to not let things affect me negatively, I guess." I continued, glancing at Steve as I said this.

Dad was looking that way too. I guess both he and I expected a sudden flash of realisation to pass through Steve's eyes. But it didn't. He just sat there, looking utterly bored by the conversation, the same expression he had the whole visit really.

What I said made sense to me and to the rest of the family sitting around in the room.

But when you've been wired, emotionally and physically, not to feel anything over weeks, months or even years, it's not like you can change straight away.

That's what clinical depression does.

And after talking to Steve, and a few other friends of mine who are going through it at the moment, it's made me really rethink a few of the misconceptions and attitudes out there about depression...

Here are a few of them.

1) Why can't they Just "snap out of it" and "be happy"?

That's something people going through depression hear a lot.

But think about it this way - don't you think they've tried this already?

 When you're depressed, you get a physiological change that accompanies psychological change in your brain, meaning that the chemicals that are usually released in your brain to make you feel happy aren't performing that function anymore. So a lot of the things that used to give you happiness don't anymore. And  because of that, you find yourself just not caring about things.

The spiral downwards can make patients more likely to go through anxiety at the same time as depression. And when you're worrying about things, yet at the same time can't find the energy or motivation or care to deal with them, it can all build up like a snowball. 

So telling someone going through depression to snap out of it is like me telling you to throw a 10 kilo shotput 20 metres. You know that it is physically possible. Hell, in your youth or at your peak, you may  have been able to do it at some point in your life. But if you were to try it now, you'd probably fail. 

Now imagine if everyone close to you and wider society told you to keep trying, no matter how unfit or how physically impossible it is. Imagine if they sat by, jeering, booing, even screaming at you, as you tried, over and over again to do the impossible. 

That is what someone going through depression feels like when you tell them to be "just be happy". Hopefully, by understanding that, you won't inadvertently kick someone when they're down next time...

2) So, it happens to those going through some form of loss or through some recent dramas right?

Depression can affect anyone, at anytime and there are many things that can cause depression.

Often, it's long term things like unemployment, isolation or loneliness, low self esteem or prolonged exposure to stress at work that can cause it. Recent events such as the loss of a job or poor exam results or a breakup can trigger it, but often there is that underlying cause behind it.

There are a lot of other things that can cause it too. Things like alcohol or drug abuse, medical illness, a family history of it and your personality (being a sensitive person, or a perfectionist for example) can predispose you to higher chances of getting depression.

And in a lot of cases, people just don't know why it's happening. They've been conditioned to feel pity for themselves, to not feel; too used to failing when they try to get better that they don't wanna try anymore. And that can be frustrating as hell.

3) But they seemed happy when I talked to them... I mean... they didn't seem depressed.

A lot of people going through depression  go through phases. They will often go weeks or months feeling and functioning normally until they suddenly get into a rut for a few weeks, where they start to feel less connection to things around them and less enjoyment from things they used to like.

As you know now, when they get into that rut, it's not like they can just climb out straight away. And if you don't know or can't explain why it's happening, if you can't see what's going on, that hill you're trying to climb becomes the sheer wall of a mountain.  

Often people will put on a mask in the form of a second personality to the outside world during this time out of fear of what others think of them. 

In a fair amount of cases, they may even have bipolar disorder, or a milder form of it (cyclothymic disorder) - making them more likely to have more severe shifts in their mood.

They may even deny it. Because it's not the "manly" thing to do. 

In truth though, coming out and admitting you may need help takes more courage than hiding behind a wall. Great organisations like Soften the F*ck Up wanna make that clear. if you're feeling that way... why not check them out? 

4) It's only a sign that they're weak in the mind. I've been through things 10x worse and look at me - I'm fine.

Congratulations...

No, but seriously, good for you.

But when you've been brought up a certain way, when you've been feeling that way for a while and when your brain is literally wired to keep you feeling that way, it's not like you can just change overnight. 

And why should the fact that others have been through worse times make them feel better about themselves? In truth... the shame that makes them feel when they can't do what you did digs them only deeper into that hole. The fact that others' suffer more only makes them more likely to see the world through negative lenses; and push them to even more drastic actions.

5) They're only having a sook. Depression can't actually affect you physically...

As I said before, depression not only changes your thinking, it also changes your brain and body's normal functioning. So not only do you lose motivation to go out, to do work or school stuff or your usual enjoyable activities, you also lose the ability to concentrate, you feel tired and sick all the time and you get other symptoms like headaches, sleep problems and significant weight loss or gain. In severe cases, thing like psychosis and hallucinations are possible as well.

Check out these links for examples of what it feels like to go through depression:

http://www.buzzfeed.com/hnigatu/comics-that-capture-the-frustrations-of-depression

http://www.depressionquest.com/

If you've got depression, and if you'd had it for a while, it can seem like it's a pit that you just can't get out of.

But there is a way out. It isn't something that can't be cured. And you CAN be happy.

It will take time, it will take effort, and you may fall a few times on your journey.

But you CAN beat depression.

And here's a few tips on how:

1) First of all - don't be ashamed of it.

Depression affects a lot of people. And if you feel ashamed about having, or maybe having it - ASK YOURSELF WHY.  

Why is it shameful to have a medical condition? As you know now - that's exactly what depression is.

Why should you let what others think dictate you and stop you from trying to get better? Why should you let what others THINK about you cause you harm?

If other people don't understand your condition - that's just showing you that they don't have the capability of understanding what depression really is. So why should you feel ashamed for their ignorance?

2) Don't be afraid to ask for help.

A lot of people - men in particular - feel that it's something they have to tackle on their own. That asking for help is a sign of weakness or something they don't want, or can't do. Well, you can do it that way.

First of all, why view asking for help as a sign of weakness when in truth, putting yourself out there to someone is a sign that you're not afraid to put yourself out there. 

Why make it hard on yourself?

If you have someone close you can talk to - a friend, family member or partner - be open with them. They'll understand if you tell them how you feel, and having someone to talk with through your journey makes you more likely to beat it and more likely to be happy. If not, that's fine - you can always talk to a psychiatrist, you will have access to resources like www.headspace.org.au or depression hotline (depending on where you live) and you'll always have me as well . Feel free to drop in a comment down below (anonymously if you prefer) or hit me up on facebook/youtube/email as others have before on my blog posts and I'll try to help you out.

If you think it's something you shouldn't talk about openly - that's fine. I mean not everyone thinks its dinner conversation and some people may not know what to say. 

But having at least one person who you can talk to openly during your battle will make you that much more likely to succeed. And if you don't have that person, or aren't too comfortable talking openly about it, here's a great site that helps Real Men get to the deeper issues affecting them. 

If you're scared of taking that first step with someone in real life - here's another site that may help:
https://moodgym.anu.edu.au/welcome/new/splash

3) Cognitive therapy

A major treatment pathway that psychiatrists use to treat depression is Cognitive therapy. It's where you attempt to fix your current thought processes by confronting and challenging them, and replacing them with a more positive, better outlook. It isn't an easy process, it takes time and effort and it REALLY helps to do it with someone you can trust.

But the hardest part is the first few weeks, those first few steps. Once you muster up the energy and will to try and get better and get past the first few weeks, things WILL get easier.  

In the end you've got to believe one thing. You CAN beat it.
That word depression is a useful label. It allows people to understand that what they're going through isn't fake. It's a real problem. With real solutions.
But that label becomes a liability when you let it define you. 
Never do that. 

If you, like millions of others around the world, really find yourself wanting to break free of depression, then:

 i) Take a step back and analyse yourself

ii) Acknowledge that your journey forward may be hard and long. But realise that instead of getting scared of that fact or making excuses not to try, doing this will ensure that you won't give up at times when you may feel like everything's against you.

iii) Challenge any notion you see that is negative by asking WHY.

Soon, you'll be able to see another way of looking at things.

And that's the first step to getting better.

A common negative pattern of thoughts seen among patients in phases of depression is one of lowself esteem.

Thoughts like "I'm a failure," or "Nothing ever good happens to me," or "There's nothing special about me," are commonly seen in depression and this questioning of self-value or self-esteem can lead to ultimately deadly thought processes like "Life's not worth living."

If you're struggling with that yourself - challenge these ideas and ask yourself why.

During my first bone marrow transplant, I was put on a treatment protocol which made me gain a significant amount of weight (20kg in about 2-3 weeks as a matter o' fact), get a moon face and lose a lot of my physical prowess.

I went from being pretty fit and sporty to not being able to run more than a hundred metres without fainting, and I went from looking like this:

To this (I'm the one in the middle):

So when I got back to university and started mixing with people my age who were much more energetic and, well, normal, compared to me, I began to really doubt myself. I'd begun to look in mirrors with disgust at what I now looked like. I kept thinking to myself, "Imagine what other people are saying behind my back." Before I knew it, I began to question myself more and more until I, subconsciously, started making my health an excuse not to go out with friends and have fun.

Whenever I got to doing exercise, I'd always do so under the cover of night or where people were less likely to watch in fear of what others would think about my huge level of unfitness, or worse yet, I would opt out of doing any at all because people would see me and laugh at me.

I was getting frustrated all the time, and I was began to hate myself. But then, one day, I took that step back and I asked myself why.

Why was I afraid of what other people were thinking of me?

First of all, were they even thinking about me in the first place? I mean, when I walk down the street, other than noticing a few finer specimens of the fairer sex, I don't really take too much notice of other people unless they're literally about to walk into me.

Even if they were thinking "WOW, what an ugly bastard," - Why was I letting their thoughts affect me? In the end, wasn't I putting myself down in order to please someone else - most of the time, complete strangers - over something I couldn't control?

I did the same thing with my exercise patterns and I found myself more comfortable running around over the next few weeks. I did little things at first - like walking few laps around my suburb and saying hi to people (most people are friendly and just say hi back - like you probably would) and soon I was comfortable enough to start running again.

Along the way - it was frustrating. I'd go weeks on end not gaining any fitness whatsoever and seeing no changes at all.  But each time I felt that way, I challenged that thought process and got to a stage where I realised that, maybe not now, maybe in a few months, I'd be back to being better. 

So why get frustrated that I was not getting there quickly? In the end that'd only cause me to stress (which is huge in reducing your progress) and if anything push me to overexerting or even injuring myself, which would only make my journey longer.

It was hard at first. I found myself looking over my shoulder and wondering what others were thinking about me all the time. I did it the hard way - I didn't talk to anyone about it.

But, over a few weeks, taking that step back, acknowledging the obstacles in my path and challenging my doubts allowed me to become comfortable with who I was.

I know that my depressive mood was self imposed and not the same as being depressed for years on end. I've come to experience real depression since I've written this, and will be writing about it soon... so hopefully my insights from the inside out can help you even further. While I write it up though - I'm always happy to talk - do so here or on my other links.

But if you think that you just can't do what I'd done in your battle with depression - ask yourself why.

Those thoughts you may have that stop you from trying to break free of its hold - those thoughts  of being a loner, of being  too stupid or dependent or scarred... that idea that you're worthless or don't have the energy... aren't they just reasons you're giving yourself to not try? 

If you really believe they're true and that it is a good reason to stop it - then why put yourself down over them? Isn't that just stopping you from doing what's logical - making an effort to change yourself for the better?

It is hard - it may take weeks or months to change yourself. There may be times when you fall back into pits. 

But if you talk to someone about it and give it time, you CAN get better.   

You're the end result of millions of generations of evolution. The very fact you exist, and that you can hear, touch, see and simultaneously  feel is incredible. Even if no-one else in the world recognises it - I think you're amazing.

For more info on how you can change yourself --> Check out this post:

Read more