I walk on water

It’s taken me sometime to gain the strength to write about what I am about to address. It’s very personal, it’s very difficult and I would be an absolute fool to not admit that it has stifled me in every aspect of my career. But, as lonely as I have felt in my situation, I know I am not; and I only hope that there is some catharsis amongst all of this and that this allows me to accept what has gone on and be able to remove the nonsensical pressure I feel from myself, my loved ones and those who follow me.

I realise I never truly addressed the main reason I took a rather long walk in the woods. Aside from it being the most incredibly testing thing I have ever done, I look back at my time on the PCT and laugh to myself thinking how I completed such an unimaginable thing. Yet, I never questioned that I wouldn’t complete it. For 5 months, it was amazing to not think about what I am about to divulge. It was a distraction and something that could put my situation into perspective. However, since leaving the PCT, I have gained so much perspective in other areas of my life, yet this one thing is a true battle that a 2600mile walk didn’t fix. And I’d be stupid to have thought it would completely fix it.

Two years ago, I noticed certain things going on with my body that are quite common and unaddressed. I noticed my nails breaking, skin breakouts, hair falling out, hair growing in odd places, skin rashes, rapid weight gain and then the ultimate, complete loss of my monthly period. Let me clarify; my entire womanhood adult life, I have been a 28 days-on-the-dot gal. Predictable in all ways. I knew when it was coming on. My vocal cords would swell and I’d feel a little mentally and physically heavier a couple of days before and then, BAM. I would be on my cycle. March of 2016 saw the absolute disappearance of it. No explanation. No contraceptive pill. No flu. No sickness. Nothing. Gone.

I immediately did my research, as one does, looking up where in God’s name it may have wandered off to. Research suggested I waited 3 months, and if it hadn’t returned, visit my Doctor. It was overwhelming the amount of females in the world experiencing fertility issues, but the problem I found was it was all surrounded by women trying to fall pregnant. It was all about fertility drugs and ovulation tests. I wasn’t in this ball game. I was a female, performing a lead role in Singin’ In The Rain who just wanted my period back. A lot of the problems result in women who are underweight and lose their period. The advice from so many doctors was to gain weight in order to get it back. I was already going in the opposite direction. I gained and lost my period?! Go figure. Along with a disappearing period, my symptoms were worsening. Everyone was well aware of how much food intake I was able to have many years ago. I could eat whatever I wanted, whenever I wanted and would not feel any affect on my body. And yes, I was stick thin. But for all to know, my body operated fantastically well. I was always well, happy, vibrant, regular, active and felt alive. When these changes started happening, I suddenly felt sluggish, moody, depressed, upset, heavy and incredibly lost.

No one knew this was happening at the theatre. The cast were unaware and I put on my usual brave Gretel face. In order to keep my body from storing every piece of lettuce I put in my mouth, I was going to the gym before rehearsals, then dancing all day at rehearsals, running the show all day, 6 days a week, then even exercising again on the Sunday. No difference. I just felt even more tired and lethargic. Putting in so much effort and seeing no difference in the mirror. At the start of the Melbourne season at Her Majesty’s Theatre, so many of my industry colleagues came to see the show and reiterated at stage door “How much healthier I looked now” and how “better I looked”. That I was an improvement of my old self. This killed my soul. Every time someone said it. It wasn’t because I was feeling “bigger” than I was, it was because my insides were completely unhealthy. I wasn’t functioning as a normal healthy adult woman. I would go home and sit on the floor of my shower and cry. My oestrogen and testosterone were all over the place and I knew it. So, after 3 months, I went to my doctor.

My doctor ran a series of tests, including blood tests and internal scans. Nothing came back in the results. Blood results were clear. Oestrogen was low, but that was to be expected not producing a period. I got a copy of the documents and kept them for reference. And of course, when nothing shows up on results, what do we claim: It’s stress related. Everything is stress related. I accepted it and practised not worrying about it. My period will come back. My body will stop swelling. I won’t have to keep eating minimal food to keep this at bay. It will all sort itself out when I just stop thinking about it. So I stopped worrying. Just be.

Another 3 months go by, still no period, more hair falling out, growing, body overheating and more weight gain. I felt terrible at this time, heading into the Sydney season. I had alternating Don Lockwood’s and I needed to be lifted SEVERAL times in the show. I felt so heavy. It was difficult for me to kick and move my legs. I was trying so hard to keep this all at bay, and working out prior to every show, because eating superbly healthy and performing the show 8 times a week was making no difference. My body was in storage mode; I could compare it to feeling a bit like post-Christmas holidays, without the smorgasbord of exceptional food. Only when everyone goes back to work and starts working it off, they get results. I was in a Robert Frost poem and my body was choosing the road less taken!

As most people were aware, I vocal rested every Monday if I had no publicity. This particular Monday, I was at my folk’s house visiting. It was always a sense of release being at their house during this time. I felt safe and not-judged. My parents knew everything that was happening but were being so incredible kind by not prying too much about it all. They respected the boundaries and tried to allow me to forget about it – hoping the period would return. Something happened this particular Monday. I was sitting at the table on vocal rest. Mum was used to it. She had an appointment that morning and arrived home around midday. I was sitting at the table just being my quiet self, and she did the thing that mother’s do when they just know. She said “Are you okay?” and I nodded my head, not giving anything away. She continued “Did something bad happen to you?” There… Did I really look that broken?? I just started to cry. I broke my silence and wept the words “I just don’t feel like me”. I reiterated “Something’s wrong”.

Bless her soul, my mum had been doing mountains of research on what could be going wrong and found a specialist women’s clinic. We booked an appointment ASAP and went there together. Mum, Dad and I. I am very grateful to this doctor, as she was extremely understanding of my situation and my job title. She understood how frustrated I was and wanted to get to the bottom of it. She put me on a hormonal medication, progesterone and diet to lose a few of the kilos I had gained over the course of the last few months. She sent me for many more tests, thyroid scans, heart scans, a complete hormone check and more. Again, NOTHING. The diet and hormonal medication she put me on did allow me to drop the kilograms, but it was not long term.  She placed me on it with hopes that the hormonal meds may kick the period back in and get my system working again. It was a short term fix to the aesthetics, but not to the machinery inside. I was grateful she tried. The advice again, try not to stress about it.

I went on to the next Brisbane and Adelaide season’s still with a dysfunctioning body.

I tried to keep myself as active as possible, eating well, cycling, walking, but it was certainly hard not to ‘stress’ over it when I thought about it 24/7. It was turning into an obsession. Googling “How to get your period back”, “I gained weight and lost my period”, “what remedies are there to bring my period back”? Trust me, I tried them all. Vitex, progesterone cream, women’s supplements.

Perth closing night was when things flagged that this was more than just a missing period issue. I went out for drinks and tapas style food after closing show. Everyone knows I’m not a drinker. I would have a glass of wine a couple of times a year. It’s not a regular occurrence for me. I chose not to whilst performing, due to swelling the vocal cords and not allowing myself to be on my A game. Plus, could you imagine if I was drinking through all this??? Woah, the depression would’ve been through the roof! I bought a new outfit for closing, a little black shorts and top ensemble. I bought it a couple of days earlier and sent a picture to mum who approved of my outfit choice and I thought I looked pretty awesome. It was a typical Gretel high waisted shorts, little bit of abs showing look.I went out for a few hours and got home at early hours in the morning. Closing night is always my ‘last man standing’ night. I looked in the mirror. My body was completely swollen. My stomach was busting out of my shorts and my face was retentive. And no, I wasn’t hallucinating, drunk or on any drugs. It had been hours of sober conversation at a fellow cast members apartment.

I was flying out the next night. I arrived home to Sydney to see the family. I later found out that my parents were shocked at how I looked. From the photo a couple of days earlier, I was completely swollen, to the point where they thought I had had an allergic reaction to something. Oddly, I didn’t realise they had noticed this at the time, but I had noticed it myself, as right when I was texting my brother saying how I still had health issues and didn’t feel like ‘me’, mum sent through a text saying I should go for a check up. I was feeling it.

So another doctor. No results. Nothing that was brought to anyone’s attention.

I moved up to Central Queensland the following week to begin private coaching and teaching. Within the space of 12-16 weeks here, I had gained almost 15 kgs. SOMETHING WAS REALLY WRONG!!! I was working out 6 days a week, at least, teaching on my feet for 4-5 hours each day, and STILL, no change in my symptoms. Skin was getting worse. Hair was brittle. The hair on my arms was darkening by the day. There was still a funky rash happening. I knew I was really unwell and I had to find out what was going on so this time, after speaking to a friend of mine who was diagnosed with endometriosis, she referred me to a fertility specialist in Brisbane. I flew down to grab the first available appointment I could, and the best thing about this doctor was that the test were all done in the clinic. I went in for my appointment and explained all of the symptoms and of course, as most doctors would say “yes, but you look completely healthy”. This was time to bring out the hard core “Previously on The Life of Gretel” pictures. “Oh!” he said. Now, it was a serious matter. I wasn’t just making stuff up.

I went into the examination room for the all favourite internal ovarian probe (which is absolutely NOTHING and I don’t know why people go on about it. Mind you, by this time I had already had a couple, so I suppose this was getting old now).

And there it was… “yep, you have cystic ovaries”.

WHAT?

He pressed the probe against my right ovary and showed me on the screen. ‘You see all of those black spots. They are cysts.” He pressed across to the left to reveal even more.

We went back out to the office and started to discuss what this meant. Stein-Leventhal Syndrome or Polycystic Ovarian Disease. Also know as, PCOS (Polycystic Ovarian Syndrome). It was a lot. He explained that the definition of my disease comes down to a ‘tick a box’ style diagnosis.

"PCOS is diagnosed especially by amenorrhea (absent menstruation), hirsutism (abnormal hair growth), obesity, infertility, and ovarian enlargement and is usually initiated by an elevated level of luteinizing hormone, androgen, or estrogen which results in an abnormal cycle of gonadotropin release by the pituitary gland — called also polycystic ovary disease, polycystic ovary syndrome, polycystic ovary disease or Stein-Leventhal syndrome"

All of my symptoms ticked EVERY box and the scan was the final diagnosis proof. I had a diagnosis! I FINALLY HAD A DIAGNOSIS. Only I felt strange, because I knew after all of my research, there’s no cure from PCOS.

Doctor’s don’t know what to do. They have no medication. It’s all trial and error. No one knows why or how. And of course, the first solution is: The Contraceptive Pill.

Well that was a mistake. In the space of a week, I gained another 3 kgs, just going on the pill. My skin broke out even more, and my body went into full water retention mode and I was an irrational human! I was a hot mess. Getting up everyday was a struggle. I couldn’t stand the look of myself in the mirror, because all I could see was NOT ME. I couldn’t see ME. I lost me. I didn’t feel like me. I didn’t look like me. I wasn’t me.

When at the Brisbane clinic, the doctor put me through a series of tests to determine my egg count, if there were any eggs left. This was a rock bottom moment for me. Here I was, looking the way I did, feeling the way I did, not functioning the way I should and now being tested to see if I will ever have the option to ever have children. The results were to take a few weeks, so I sat on that information for a while. It’s not a nice feeling. Not for any woman. My future of a husband, children and a healthy life was all seeming like a mega fail of a plan.

On top of my mega low-point, the Specialist I was seeing suggested seeing an Adrenal specialist to determine if I had Cushing’s Disease. What? This disease is associated with the Adrenals. Generally speaking, a tumor on one of the glands, that can be removed with surgery. PCOS can be a symptom of someone who suffers from Cushing’s. The hardest thing is the diagnosis for Cushing’s is difficult. It’s a long and intense amount of blood work and urinalysis.

So, off to Sydney I trot. The Adrenal specialist was incredibly thorough and willing to help me on all levels. She too, was just as confused as all doctors, but definitely trying her hardest to assist me in something that was tearing my life apart. It was 2 weeks straight of test after test. I had a total of 10 blood tests in the space of 4 days. But no - nothing Cushing’s related. The final diagnosis was a rampant case of severe PCOS. Rampant- Great !!  My blood sugars were tested and it turns out my most severe symptom lies in my Insulin Resistance – a very common symptom of PCOS sufferers. When normal healthy bodies process sugar, mine stores it and stores it. It’s in a constant state of storage. It’s a pre-diabetic condition that comes with the great PCOS. Just another thing to add to why my body is doing what it did. I was placed on Diabetic medication since July 2017 and still remain on it.

As horrible as this sounds, in hindsight, there was a little part of me that was wishing for the diagnosis of Cushing’s because at least there was a known cure. With PCOS, there is nothing that is officially the ‘treatment’ to seek. Some say through diet, some say through exercise, some say high fat, low fat, vegan, carnivorous, vegetarian, detoxes, supplements, protein shakes, intermittent fasting, eating every 2-3 hours and MORE! It’s outrageous. NO ONE HAS AN ANSWER!!

Thus, this paved the path toward the PCT. My time to just forget about it. It worked, to an extent, but damn, it was hard to hike 50 kms a day on no sugar, diabetic medication and watching my fat intake. But the reality of life is, I don’t walk 50kms a day. Once that was over, it was over, of course  the body started to be naughty again.

So here I sit, finally telling my tale. Since officially moving overseas in December, strangely enough I have seen a few recent changes. Out of the blue, I’ve had 4 consecutive periods in a row, I’m still on my diabetic medication, but my body is still gaining weight; however, I feel like I am now just having to accept what this condition is. I have been in denial of it and ashamed of every bit of me, and it’s holding me back in every sense. That’s not helpful, and it certainly isn’t helpful to others who are experiencing the same disorder. Some days are better than others. Some days I want to dance in the sunshine, other days I want to hide away in my bedroom until tomorrow. It’s difficult to go to the gym and see women who started at your body dimensions, seeing results, and your stuck on a cog wheel with no effect. It’s unfortunately a long term problem, with no one solution. The solution is living with it and not hating yourself about it. I’m still Gretel. I’m still me underneath this skin. I’m still a good person with great intentions in the world. Unfortunately, as little of a slice of me that the PCOS is, it feels like it makes up 90% of me but I have to remind myself, it doesn’t. I have such high expectations of myself and feel them from others too.

Now, the only way I can, I’m embracing it and allowing myself to live as me. I know that women with PCOS just want to hide and feel alone in their health decline. No one can relate unless they actually suffer from it or have seen how it hurts to not be able to control a monster of a syndrome. I'd be lying if I didn't admit that everyday is a challenge! It takes away everything you feel is YOU. I will conquer it eventually. Just like the PCT. It’s just a lot longer than 2600miles.

- G xox