Struggle Street for you is Struggle Street for you

Seems like a meaningless tautology but I’m going somewhere, promise.

This idea has always bothered me, not just in the context of my illness but in life in general: if you are suffering in any capacity, you’re supposed to remember those worse off than you, and feel better. Yes, some people and some circumstances do call upon that perspective. We’ve all needed to be reminded just how “first world” our problems are on occasion, and it certainly can be helpful and quite therapeutic to focus on what we have as opposed to what we don’t.

But I think that phenomenon also stands to make considerate people with a lot of perspective feel guilty for struggling with something genuine, like they’re not entitled to any indulgence in self pity because others might be suffering something perceived to be worse. I remember a friend crying on my shoulder one day and saying something like, “I feel so stupid, you’re dealing with [something] and you’re doing fine and here I am crying about [whatever].” I can’t remember what either of us were going through but I remember responding by telling them that they were stupid. But like in a really uplifting way. If something is upsetting you then its upsetting you. Feels are seldom if ever rational, and trying to rationally explain them is irrational. Denying their existence is irrational. For whatever reason, whether it be our life experience so far, our nature or our nurture, something causes you to struggle or suffer to the extent that it does and there’s often little that can be achieved by trying to tell yourself that rationally, you shouldn’t be so sad about it. Sometimes it makes you feel better and other times it makes you feel like a whining twit.

There are so many worse things in this world than my various ailments and I remember that every moment of every day, I really do. I’m so lucky. I have so many close friends even, who would consider their lives massively improved if they lived with my conditions instead of theirs. Hugely. And they seem so much stronger than I am! I swear, there are two girls in particular that I have in mind and I’m pretty sure they’re both secretly Super Woman disguised as a Spoonie and doing a really bad job because they don’t whinge enough. They’re my heroes. I admire them every day. I only hope that their internal struggle is not too far beyond what we see. ❤

But I’m proud to be game enough to admit that I indulge in self-pity quite a bit. I know full well and rationally that I have it pretty damn good in the grand scheme of things and I am so thankful. But I do struggle. I do suffer and it is a battle that few people understand or even perceive to exist, which is a battle in and of itself. And what I refuse to ignore is the fact that neither of those beautiful girls would ever dream of denying me my own struggle, nor would anyone else with a chronic illness of any severity. Nor should anyone with any battle to fight. And everyone’s fighting something.

Post-POTS

#pastey

POTS is a form of what’s known as Autonomic Dysfunction, or Dysutonomia. What that means is that something somewhere along the line (could have been the glange, could be genetic, could be things I’m eating causing inflammation, could be the hole in my heart, no one really knows) has damaged my autonomic nervous system. This is the system in the body responsible for sending all of those signals between the brain and the body at the subconscious level. So heart rate, heart rhythm, digestion, blood pressure, temperature control etc. etc. The things that you don’t think about. My autonomic nervous system is a bit drunk, and all of these systems in my body are effected. The best reaction that I’ve ever had when explaining this to someone was, “So its kind of like, ‘Oh, I’m hot. I might sneeze.'” Which is hilarious because without fail, I sneeze every time I step into the sun so she was quite on point.

POTS is the autonomic nervous system’s failure to control my heart rate and rhythm. Some things are explained by the POTS directly, and others by other forms of dysutonomia (conditions like irritable bowel, as well as random things like my sensitivity to temperature).

This diagnosis suggests that the profound fatigue issues are caused by the fact that my heart was working overtime all the time. At 103bpm average as opposed to a much healthier 70 or so, I was exhausted all the time because my body was basically running everywhere all day. No wonder it felt like it was going to implode. The great news is that beta blockers have gone a long way towards curing this particular aspect of my condition. I think its been long enough now to safely say that I no longer have completely crash days where I physically cannot get out of bed. Its definitely still a struggle, getting out of bed is by far the worst part of my day. Its really awful- and a frustrating paradox is that the better I sleep, the worse it is. But its doable, and once I’ve been up for a couple of hours I’m generally functional. Wohoo! That’s a win.

The POTS also explains the dizziness which 100% still exists, and if anything is worsened by the beta blockers. That’s the best way I can describe their effect: they’ve hugely improved the long term fatigue issue, but some more acute things are worsened. What the beta blockers do is obviously lower and control my heart rate, but they actually stop it from going faster in circumstances where it might need to, e.g. when I stand up (cue dizziness) or run (lol nope, so not a thing). I definitely can’t stand (especially still) for long periods of time or walk any more than 50 metres without kicking it up struggle street (this hugely varies day to day and walking at all is always an effort).

Other than that, the POTS diagnosis hasn’t made a huge physical difference – the biggest impact has by far just been having a name for what’s wrong with me. Belonging to a community of spoonies and being entitled to say that I have a heart condition when I need to has been a huge advantage. I have a disabled parking placard and I think I’m going to pluck up the nerve to get myself a key to the lifts at work. But mostly, being able to say that I have a condition generally makes people considerate of my limitations. And that really helps. ❤ xo

Pre-POTS

This is the whole big story.

TL;DR: Been sick for a bit and it took a long while for people to get up with that. But its all g now cause I know what’s wrong (I think) yay. Read on for boring self-indulgent details.
x

I was diagnosed with Postural Orthostatic Tachycardia Syndrome in September 2014. I mention this straight up not because its the only or even the most profound condition that I have. I mention this straight up not because it’s that clean cut. There are so many things that factor into my overall condition (see The Basics page), but diagnosis with POTS was one huge thing for me: it was the first time, after ten years of illness, that anyone found anything wrong. Tangible. Physical. There. I wasn’t insane or lazy or crazy. You can’t fake tachycardia. AND. It was possibly, just maybe, treatable. Not curable, but manageable. But more on this later…

I’ve been sick with chronic fatigue, postural dizziness, fainting, weakness, poor immune strength and gastrointestinal issues since I was 10 years old, at least. At first, everyone blamed puberty. Then, at 12, I got the glange (mononucleosis/glandular fever). Poor glange copped the blame for everything wrong with me for the following forever. “Chronic fatigue can last for years after GF,” they told me. “Take it easy, get plenty of rest. Drink plenty of water. Are you drinking enough water? Drink lots of water. More water.” Yippee.

None of this explained that pesky dizziness, though. At 15, a paediatrician diagnosed me with postural hypotension. He explained that I’d had a growth spurt and my heart was just slow to catch up. I’d grow out of it soon. Not much else we could do in the meantime, more water and proper diet. Some mild exercise. He noticed that my heart rate was a little high, but attributed this to “white coat phobia”, I remember him saying. Odd seeing as, by this stage, I was pretty tight with doctors. But alright. (None of this sass is meant to insult doctors, I’ve had some incredible physicians over the years. I just mean to communicate the frustration that comes with having an illness that most GP’s still don’t know exists, let alone everyone else.)

I averaged a 20-25% absence rate all through high school, not including an extended period of absence for the last six weeks of Year 8. In Year 9, I somehow swung a deal where I could just turn up to school whenever I wanted, no explanation needed. Lunch time. Never. Whenever I could manage. In Year 10, I started dating my first boyfriend which, for the first few months, provided the best medicine in the form of rampaging hormones and funny tummy feelings. But after a while, the blessing became a disguised curse as I started to favour lying in bed with the angel feeding me vitamins, even on a good day. Bless his heart. I’ve been in three relationships and I remember each one of them lying next to me at some point and asking, “Are you sure this is normal?” “Yes, I promise I’m not dying, being so tired that it hurts is just what my body does best… Now shh…  not sure if going to scream or vomit but either way this suffering is about to come out somehow and I felt the need to warn you.”

This was the main struggle throughout my high school years – those days that I just could not get out of bed, or worse, was in total agony just lying there. The only way that I could think to describe it was to explain that it felt as though every normally subconscious bodily function was a mammoth effort. Breathing, holding the food in your stomach, any kind of movement. But even with days like that being a frequent occurrence, I never felt like my life was defined by illness. Don’t get me wrong, it was a constant struggle. I was always getting extensions and missing days but I had good enough days to manage to do most things that I wanted to do, I felt.

Term 3 of Year 12, I managed to contract two separate mystery death viruses, resulting in a week of absence each and the complete dropping of my academic bundle at the most important possible time. In my first semester of uni (2013), I got viral meningitis. I was getting sicker. I had to get an extension on my first ever uni assignment, and I failed my first ever uni exam. By this point, I’d tried everything under the sun to try and fix me: numerous GP’s, every blood test and scan known to man, dieticians, naturopaths, daily exercise regimes, drinking all the water ever, and several councillors and psychologists.

Everyone’s eventual conclusion was almost always post-viral effects from the glange, and/or mental illness; anxiety and/or depression. I just thought too much, I remember my favourite GP telling my mother. “She thinks too much for her own good.” Sorry. Right, how to think less…. I knew what he meant though. He was right. I’d always been an old soul, I’d always been capable of thinking things through more than most my age would or could. Anxiety was something that had plagued me since I was very very young. As a kid I had all sorts of strange phobias and anxieties, and many of them have translated to adulthood. I’m severely emetophobic, for example (fear of vomit. Its a thing, honest.) You know how most normal people get to a certain point on the nausea scale before they just let it happen, because they know they’ll feel better afterward? Not me. Despite spending more of my life nauseated than not, and some pretty severe food allergies that I tend to ignore, I’m currently on a four-year-long no vomit streak. I’m convinced that I’ve taught my body how to control it. Frequently, I get to the point at which I have to lie perfectly still, breathe slowly, and just concentrate on not letting the gag reflex activate. Hours, this sometimes lasts, until my body finally gives up and the nausea subsides. But who says I need a psychologist.

Kidding I’ve never denied the presence of anxiety, and I have always found that visits to psychologists have been effective. If, for no other reason, than as an opportunity to blurt out everything that I couldn’t say to people who cared about me for fear that they’d worry too much. It would seem that’s what I’m replacing with this blog. I mention this because I can’t emphasise enough that, if you do suffer from any chronic illness, no matter how physical- stress and anxiety needlessly take up your spoons. There may not be effective remedies for your illness but there are for anxiety. I found that my last psychologist in particular (cannot recommend enough) taught me a lot of very real strategies, not just for managing anxiety, but actually freeing myself from it in particular situations. She was amazing, and made me feel like I was really funny and witty as opposed to just screaming, YOUR PROBLEM IS SO OBVIOUS GET RID OF THAT BOY HE IS THE DANIEL CLEVER TO YOUR BRIDGET JONES. I almost judge her for not doing so, if I’m honest. (Daniel, if you’re reading this, 1. hahahah I caught you secretly caring, and 2. don’t get all snippy, we’re friends now, but you can’t deny all the therapy you cost me back in the day :P)

I have no shame in admitting that having my heart broken definitely triggered a spiral down in my health. Its okay, it makes medical sense. It wasn’t because I was mentally weak, I had the will power to get over that boy. But the more I will my mind to cope with things, the more it pokes holes in my body. I’ve learned that now. I dropped out of law school before my second semester mid-sems. As much as I still love and find the law fascinating, I’d been denying that I wanted to be a teacher all my life. People always told me I could “do better”. Now that I work in the thick of it, I can’t think of anything that could possibly be better, more meaningful, more rewarding. Everything happens for a reason, and it’s perfectly proportional to my stubbornness that I had to get sick and have my heart smashed before I’d make that change. I couldn’t be more thankful for it.

Aaaaanyway, (my this post has many tangents, I’m awfully sorry – I could fix it but it is all part of my story) I was still sick, no matter how much I pulled back. I took some time off, studied part time and intermittently via distance education. The inability to concentrate and read had become the killer. It didn’t matter if I had all the time and energy in the world to get through that peer-reviewed article, I just couldn’t do it. Graduated with an OP 2 even after getting sick and I couldn’t read an article required for an Arts degree with no entry requirement. What was wrong with me. I would just fall asleep. I would read three words and my eyes would scan over the rest, over and over and nothing would go into my brain. And eventually I’d fall asleep at my desk.

I went back to my GP in 2014 and said, “I’m convinced there’s something wrong with my heart.” I’d noticed palpitations, or a sort of “thud”, and that my heart rate was generally higher than it should be. But it was the dizziness, that profound postural dizziness that had been with me for so many years… my blood pressure wasn’t really low, so why couldn’t I stand up like a normal human? That couldn’t be explained by anxiety or fixed by ridding my life of stress and bad boys. And at 19, I was done growing, so I felt the paediatrician had missed something.

My GP referred me to a cardiologist. He did a halter monitor on my heart for 24 hours. My heart rate over that period of time, including 8 hours of sleep and absolutely no physical exercise, averaged out to 103 bpm. It reached 178 at one point for no particular reason. It was also irregular. Eureka. I was happy, I was so ridiculously euphoric, I remember driving away from the cardiologist with a prescription for beta blockers blasting AJR’s “I’m Ready” like I’d just gotten laid. Like basically me.

The diagnosis was POTS, which explains basically everything. It’s possible I’ll just grow out of it one day, but likely it’ll be with me for life. Especially considering that follow ups from this discovered a PFO (Patent Foramen Ovale – a hole in my heart). This is a structural issue likely worsening the POTS, but its too small to fix or close.

See further posts for more on developments since the POTS diagnosis. xoxo