Rolling back to June
When I think back to June, I was well and truly firing on all cylinders (even if I do say so myself). My career was keeping me very busy, with a job that I truly love and adore. I had a wedding just around the corner, which I was truly enjoying planning, despite the little dramas being thrown in my direction. Then I had a blog, which over the last seven years has brought me so many opportunities and the best friends and contacts. I was juggling a lot and whilst on the surface I was keeping everything together, the fact of the matter was that I was poorly. In fact, I’d felt poorly, probably for the best part of three years, but I was so used to that poorly feeling, that it just became the norm.
I knew I was ill and I knew something was wrong, but my cries for help basically went unnoticed. I’d complain about feeling ill, having headlines, sweating uncontrollably and not being able to lose weight, whilst my blood pressure skyrocketed – yet the answer every time I saw a doctor was “lose some weight, see how you feel”. Now I totally get that we’re all working on the law of averages, especially those of us that are time strapped, but the fact of the matter is that no one was taking it seriously and I was driving myself into the ground. I worked harder than ever, and I attempted to workout harder, yet I consistently felt ill and barely slept.
Enough was enough
One night enough was enough and I couldn’t take anymore. After waking up for the six or seventh time, with my whole-body aching, changing my sweat-sodden PJs for the second time, I decided that I was going to do something about this and people were going to listen. That next night, instead of taking off my Apple Watch at the end of the day, I left it on and tracked my body as I slept. I found that instead of my body resting and my heart rate dropping, my heart was racing at 120 beats a minute as I slept, forcing myself to wake up and feel like I was running on a treadmill. That data was all I needed for someone to listen, there were facts that couldn’t be argued with.
A few days later I was wrongly diagnosed with arrhythmia (otherwise known as an irregular heart beat) and after a few worrying trips to the cardiologist, a heart ultrasound and a couple of ECGs, I was given the all-clear. My heart was fine, and it felt like the biggest relief in the world. Not knowing what was wrong with me, the cardiologist suggested sending me to an endocrinologist, who I met just a few days later.
When I walked into the endocrinologist’s office, it was truly the first time somebody listened to what was going on. We spent the best part of 45 minutes talking about me: how I felt, how I slept, how I breathed, panic attacks, the sweats, my emotions, my job – we literally discussed everything. At the end of the meeting she basically gave me two outcomes: I was either going through the menopause at 26 or I had a very rare disease.
Now at that time, I have to be honest I just heard menopause and I was shaken. Shook to the core with the feeling that I was about to get married (to a man I adore) and that I was never going to be able to bear his child and many signs pointed to that outcome. We took a lot of bloods and also two 24-hour urine collections, which she indicated would tell us what was going on.
The real diagnosis
We returned to the endocrinologist a couple of weeks later and I had braced myself for a line something like: “we didn’t find anything going on, it’s time to come off your contraception and figure out the situation”. Except that wasn’t the case at all: my urine tests had showed unusual levels of adrenaline in my system, in fact my adrenaline levels were nine times the normal level. Meaning that my body was working in flight or fight mode, constantly. At this point was the first time I’d heard of pheochromocytoma - a rare tumour of adrenal gland tissue which secretes stress hormones and results in your hormones being completely out of whack. The endocrinologist explained that the next step was to confirm this diagnosis with an MRI scan, but that she was fairly sure that this was the outcome we had ahead of us.
This is when the long process heated up a little bit, instead of waiting weeks between scans and appointments, we were just waiting days. So, after an urgent MRI and follow up appointment, we had confirmed that actually we wasn’t actually dealing with pheochromocytoma, but a paraganglioma tumour – an even rarer neuroendocrine neoplasm which can occur anywhere between your eyes and your thighs. It’s a very scary condition that actually rarely gets found in living people, due to the fact that the side effects of paraganglioma are very similar to lots of other diseases or issues (like the ones I was feeling). The biggest issue you face is the stress on the heart and body, every time the tumour decides to secrete hormones, your heart and blood pressure respond. Meaning you’re at risk of a heart attack and your body just giving up.
Stepping back and waiting surgery
It is for this reason that I was told to stop everything and to remove myself from any situation that would cause unnecessary stress on the mind and body. The goal is to avoid situations where by body would release adrenaline and make me feel even worse. I had to step back from work, pass on a lot of wedding planning and my blog had to be put on the back burner – all to ensure that I was in the best health I could be in, away from anything that could make me poorly.
The only real cure for paraganglioma is to remove them from your body, which is why I’m currently awaiting surgery. Normally, these operations are deemed to be medical emergencies and the aim is to get the tumours removed from your body ASAP. The problem was at this point that I was six weeks away from walking down the aisle and if I had had the surgery at that point, I wouldn’t have recovered from the operation and the wedding would be cancelled. Although I was comfortable with cancelling our dream honeymoon, none of us thought that cancelling the wedding was a good idea. At this time, I was put on medication to keep me physically safe from my heart doing anything silly, and I just had to muddle through life and get to the wedding.
My paraganglioma is an aortocaval tumour, which happens to be in a nice, complicated place (because nothing is ever simple)! It sits behind my kidneys at the height of my pancreas, set on my left renal (otherwise known as kidney) vein and the plane of dissection (otherwise known as the main vein that runs vertically down the body). This means that my five-hour surgery is pretty intense and not without risks, which is something I try not to think about.
So why am I telling you all this?
Well it’s for a few reasons actually. The main one is that I want my story to be out there on the internet, as they are few and far between. When I was first diagnosed in August, I searched and I searched, yet I found very little to read, only a couple of YouTube videos that scared the life out of me.
Secondly, writing is always something that calms me down and this is the first time I’ve told this story from the start until now (we are far from finished) completely uninterrupted and it feels SO GOOD! I’m keeping it together on the surface, but if I’m honest I’m really scared about this next surgery step and I’m of some of the outcomes. And my lord, it feels good just to let us some of these thoughts out of my head.
So what next? To be honest I really don’t know! I have a pretty intense operation ahead of myself this year, which will wipe me out well until 2019 and to be honest, the whole thing is messing with my head. I plan to write whenever I have something to say, but I’m unsure that much will be making its way to the Internet over the coming weeks.
I hope you understand the cutback in content on this little space, but know that my obsession with makeup continues and I have a lot to catch you up with when the time is right!
