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.