New site, new me

It’s been a while. My life has changed so fundamentally that I haven’t known where to start, or how to even begin to convey the shift without losing everyone immediately. 

(Before we go any further: no, I didn’t find Jesus. Even worse.)

The background

Almost a year and a half ago, I was finally diagnosed with a skin condition on the autoimmune spectrum. It’s called lichen sclerosus, but I don’t recommend you look it up. The cliffs notes version is that it causes the skin on and around your lady parts to turn white, thin, and itch incessantly. Because the skin is so thin, scratching the itch (or doing anything that irritates the skin, such as, say, having a bowel motion, or sex) splits the skin and causes bleeding, fissures, and lots and lots of pain. Oh, and more itching. Endless, relentless, mind-bending itching.

Getting the diagnosis had been a journey of almost a year of daily misery – but my relief was short-lived. I was given a tube of steroid cream to help with the itching and told there was nothing else anyone could do. I was likely to have this forever, and it would never get better. Sucks to be you, my doctor said kindly, and shovelled me out the door.

Around the same time, I was told that my thyroid was “normal”, even though I was positive I hadn’t been ovulating since getting pregnant with Luca, my periods barely lasted two days, I was so exhausted that I could barely climb the stairs, my toes frequently got so cold they went numb inside my shoes, my brain felt like it was stuffed with cotton wool and I couldn’t even remember what it felt like to feel excited or engaged by anything. 

The only upside was that I didn’t really mind that it was too painful to have sex, because my sex drive had completely vanished, and taken my imagination with it. I’d not only stopped writing fiction, I couldn’t even be bothered to read it – my brain couldn’t see the point of wasting time on anything that wasn’t real.

My lower back also hurt so badly that lying flat on the floor felt like I was lying on bars of hot metal, and then my knees started to hurt too – until every time I bent over sharp pains shot through my joints.

I’ve suffered from IBS since puberty, but my digestive problems were also getting worse and worse. I was constantly bloated and constipated. I had hay fever all the damn time, although it was hard to tell because I also always had a cold. I got every illness the kids brought home from daycare, and stayed sick long after everyone else was better. 

Just to round things out, I’d developed an allergy to my cat, and then I started having an allergic reaction to alcohol too (wine, you guys. My beloved wine!). Cutting onions made my eyes feel like they were exploding, and I’d randomly get hives for no reason. My nails, which had always been really strong, started to peel and split. My hair didn’t fall out, but it changed texture, managing to be both brittle and fluffy at the same time.

In short, I felt like I was falling apart. After Luca was born, I’d always thought we’d have a third baby, but I couldn’t see how it would be physically possible. I was genuinely convinced that if I did, my body would never recover. I felt like everything I wanted and cared about had melted away, until all I had left was my kids, Diogo, and dragging myself with gritted teeth through the bare minimum every day.

The road back

After the diagnosis, I couldn’t accept that that was just it. Take the steroids to dull the itching, and otherwise just live with being perpetually exhausted and stupid and in constant pain – it’s normal! You’re fine!

I wasn’t fine. I couldn’t be fine. This could not be it. It wasn’t that I wouldn’t accept it – I actually felt like I couldn’t. If this was the rest of my life, I felt like I wasn’t even sure it was worth living. I’m not saying I was hiding in my room sharpening the razor blades, but I decided I had to try and do something about my health myself. 

As a start, I cut dairy out of my diet again (I’d nixed it to good digestive result before getting pregnant with Nico, but during said pregnancy I’d gone balls-to-the-wall on ice cream and remained there ever since). I figured that anything that helped my IBS was bound to help the tearing and bleeding – even if it was just by making my bowel motions more regular.

So I ate a tonne of fibre. I went back on probiotics. I started lifting weights with a personal trainer twice a week and working even harder on our diets at home. At this point though, I thought our diets were already pretty good. I love to cook, and in trying (and totally, utterly failing) to lose the baby weight after Luca was born, I’d got pretty militant about what we were all eating. I made sourdough, home-cooked the vast majority of our meals, and got organic veggies delivered.

Cutting out dairy, it turned out, did help. It helped a lot. The itching subsided enough to stop me feeling like I was going to go insane. I mostly stopped bleeding when I pooped, and the agonising pain that had wracked me after a bowel motion went away. It still hurt, but nothing like it had. (There was a period where I’d had to lie down for half an hour or so after every BM, clutching the sides of the bed and heavy breathing through the pain.)

I’m a natural skeptic, but since removing dairy had been so helpful, I decided to go to a naturopath to see if there was any further advice she could give me. I had one appointment, where she said I needed to cut out dairy, gluten, meat, and all grains for three weeks and replace half my meals with smoothies made from a protein powder she managed to sell me for a truly ridiculous sum. She tried very hard not to call it a cleanse. I left with a pile of very expensive supplements and no idea why I was meant to take any of them, or how they were meant to help. 

Now, at this point, you need to know that my four-year-old takes after me. Every second word out of his mouth is “why?”. He needs to understand why he’s being asked to do something before he’s willing to do it. His sense of fairness and justice is very, very tied up in not only understanding how things work but why they work that way. At our first parent-teacher meeting, his preschool teacher told us that he’s a perfect student as long as A) he’s told why something is happening, and B) that reason feels both logical and just to him.

I can relate, kid. I call it my “problem with authority”, but it’s frequently more a problem with stupidity. I can’t abide doing things that don’t seem to have a purpose, or where the purpose doesn’t make sense. “Just because” has never cut it for me, even if I sometimes wish it would cut it with my toddler.

So a few days later, I asked the naturopath to call me. I really needed to understand why she was recommending what she was recommending. She couldn’t explain it to me – in fact, she barely even tried – so I didn’t do the cleanse.

There goes that idea, I thought. But later, I was telling my cousin about it and she said, “oh my god, you need to meet Shelley.”

Shelley was something called a “functional nutritionist”. She’d helped my cousin, who has celiac disease, get healthy when she got pregnant with her first child. In fact, she’d got her so healthy that it had caused her ongoing issues – her son had been born so plump and hale that when he later dropped into being the skinny string bean he was genetically destined to be, her Plunket lady became convinced he was malnourished and kept making her take him to the hospital for monitoring.

I left my first appointment with Shelley thinking maybe I was in love. Not only could she explain all the whys to me, but she was convinced that we could not only stop but reverse the lichen. She also wasn’t interested in only solving that problem, or even solving the hormonal problem I thought was underlying it – she wanted to go all the way back to my digestive issues and solve those too.

As she explained it, the lichen was caused by inflammation. My body was attacking its own tissues in a way it wasn’t meant to. But, unlike the other medical professionals I’d seen, she wanted to understand why the inflammation was happening. Your body doesn’t just start misfiring in a vacuum. Something has happened inside you to cause a malfunction, and that malfunction has built up over time. Your cells haven’t repaired themselves properly. And eventually, that malfunction manifests itself somewhere – on your skin, as a tumour, as fatigue or brain fog or depression, or numerous other symptoms.

She traced a path backwards for me. The lichen was the most visible end point of a chain that began with my digestive system. Light after light switched on. I couldn’t believe that there was this incredibly obvious solution just sitting here, and that no one was talking about it. Look after your body, and it will do what it’s meant to. We weren’t subduing my symptoms or changing anything in my body – we were just supporting it to find its own way back to health. 

And, to my wonder and surprise, it did.

The new normal

The size of the change that’s been wrought in me staggers me daily. But I don’t know how to talk about it, because it seems both so flimsy and obvious (eat vegetables!), and considering the way we think about medical issues in this modern world, so incredibly unlikely (eat vegetables!). We helped my digestive system work better, took out foods it turned out I was intolerant to, added a few supplements to support things that hadn’t been functioning well… and it changed my life.

My lichen sclerosus is not only symptom-free (except for one day a month around my period, and if I accidentally eat gluten, dairy, oats or corn), but I’m having regular, totally PMS-free periods every 28 days for the first time in my life. I’m not allergic to wine, or my cat, or the pollen outside. I hadn’t even realised I’d always had an issue with post-nasal drip until it stopped.

For the first time since I turned 12, I’m free of IBS. I have a bowel movement every morning after I wake up, and it’s never painful or crampy or surprising. I don’t get constipated or suffer from regular diarrhea. I’m not so bloated I could be 8 months pregnant after every second meal.

I sleep well and wake up feeling good. For the first time I can ever remember, I have actual, real live energy. I’m excited to do things, and my brain feels like it’s firing on every cylinder. I’m not depressed or fatigued or foggy. I’m not living with a constant hum of vague anxiety in the back of my head.

My nails are strong. My skin is clear. When everyone else gets sick, I often don’t – or at least I get less sick, and I get better faster.

What am I taking to effect this massive, life-affecting change? I still take a couple of NAC every day, but other than that: nothing. I avoid dairy, gluten, oats and corn. I’m careful about vegetable oils and sugar. I go for a walk every day and try to meditate at least a few times a week. I go to bed early. That’s really about it. My entire life changed, and all I had to do was give up KFC. I don’t know how to explain it to people without sounding ridiculous.

I tell friends about this and they say “but what do you eat?” and “I couldn’t do it – it doesn’t sound worth giving up bread/pastry/cheese/pizza”.

All I can say is this:

I eat better than I ever have – and I love to eat. It was hard to get used to, it took a long time to fully adjust, and I went through all five stages of grief for every food I realised was causing my symptoms to flare up, but now, I don’t miss it. Genuinely. Would I like a piece of hot, crusty sourdough with butter? Yes. But instead I have some variation on eggs and bacon and mushrooms and avocado and kale for breakfast every morning, and I feel amazing after it. I eat soups and salads and stews and curries and tacos – I just make them myself, without gluten or dairy.

It helps that eating even a tiny crumb of butter makes me itch until I bleed and then feel exhausted and depressed for a week, but feeling strong and healthy and filled with energy is more than worth giving up the 10 minutes of bliss while the KFC was in my mouth (right before the stomach ache kicked in).

I think an awful lot of us have forgotten (or never known) what it feels like to actually be healthy. We’ve normalised things that just aren’t normal – bloating, headaches, constipation, feeling tired all the time, period pain, sore backs and knees, zits, skin issues and rashes, anxiety… 

We understand on a basic level that food, stress, sleep and exercise matter for our health, but we don’t understand how much, or how far our “normal” lives have strayed from what our bodies actually need.

I understood that my body needed vitamins and minerals, but I had no idea what those vitamins and minerals actually did, or how many I was getting in my diet. It turns out that if you eat a “standard” diet, it’s pretty much impossible for your body to get all the things it needs to keep your cells healthy. The breakdown will be slow and gradual, but over time you will start to break down. Those less lucky (like me) will break down faster and develop chronic or autoimmune diseases that will significantly affect their quality of life.

In our polarised world, there seem to be only two possible camps now – either you believe in science, and therefore surgery and pharmaceutical drugs are the only “real” ways to treat disease, and anything else is just the placebo effect or hippie nonsense; or you’re a full-on anti-vaxxer sharing conspiracy theories on facebook. 

But there’s a middle path. Science is amazing and we’ve learned things that have saved countless lives, but we’ve learned mostly how to treat the symptoms of disease. If I get hit by a bus or have a heart attack, I’m going to be deeply grateful for medical science. But medical science doesn’t have all the answers yet, and the focus on diagnosing and treating diseases lets a lot of us down, a lot of the time. 

I have a friend who went to her doctor with a rash covering her entire body, periods so heavy she could barely leave the house, constant exhaustion, constipation and depression – and because her blood tests were all “within range” she was told there was nothing wrong with her.

Another friend went to the same naturopath I mentioned above, did the “cleanse” and her heavy periods resolved. But she didn’t learn anything or come away with any permanent changes to her lifestyle – she finished her four weeks and went straight back to her old life. I saw her six months or so later and asked if she was still feeling better. She cheerfully told me all her issues had come back, so her doctor was booking her in for a hysterectomy. 

They were removing an organ from her body rather than figure out what was causing the problem – and I felt like I was the only person in the room who thought this was insane! Especially because, since removing her uterus won’t solve whatever imbalance is happening, she’s likely to find herself a year down the track with new symptoms elsewhere in her body. 

Your organs don’t operate in a vacuum. Everything is connected to everything else. 

And everything starts with what you’re putting in – your body literally makes itself out of what you put into it. It takes the fats and amino acids and vitamins and minerals from your food and creates literally everything that makes you you. And if it’s not getting enough, or it can’t absorb what it’s getting, or it’s under too much stress (from illness or inflammation or actual stress), it will start prioritising what it keeps running and what it lets start to fail. It’s that simple and that complicated.

How am I so sure? Because I got so into this stuff after seeing the change in my own life and health that I’m now part way through a diploma in nutritional therapy. This is a real thing, and there’s a whole world out there of doctors and medical professionals practising what’s called “functional medicine”. This is the future, and it is the goods.

So this is me, reintroducing myself to you – and outing myself as a freshly-minted health nut. 

Told you it was bad.

By Katie Freire

Writer of things. Annoyer of cats. Mother of very small dragons.

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