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.
An accurate depiction of how this feels. An amazing article/page displaying portraits of how people represent their depression. Highly Recommended viewing!
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.
But Dad was running late. Time was ticking down, and my body was in severe pain.
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.
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.
And most importantly, that fog lifted. And I realised, looking back, just how down in the dumps I was.
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
