Life can be painfully hard. I’ve written before about my struggles with mental illness and ADHD, losing people I love, bullying, sickness, alopecia and autoimmune disorder, obesity and my physical health. I’ve even at times mentioned these concurrently, each overlapping and coinciding with one (or several) others. At my lowest point I was chin-deep in undiagnosed Generalised Anxiety Disorder and Depression, I was morbidly obese and unhealthy, my hair was falling out and I was being bullied at work. But that isn’t what I want to talk about today. I think we can all agree that at some point in their lives everyone will hit rock bottom.
What I want to talk about is how happy I am.
I don’t often go out of my way to discuss how wonderful my life is these days, not least because it’s so easy to get caught up in the stresses of day-to-day living. I also don’t want to brag. Every day people go through struggles I can’t comprehend; talking about how fortunate I am for the things I have seems tacky somehow.
But here’s the real deal: I’m happy. I love my life. It is full of wonderful people and amazing experience. Yes, sometimes stuff sucks. Sometimes stuff is hard. Sometimes I cry. But I am happy. Those two things are not mutually exclusive.
The point I am trying to make is that dejection, loneliness, misery, heartache… These things aren’t permanent. They’re transient. They come and go like waves on the ocean and, like my life now, can co-exist with happiness, prosperity, pride and success. I still have alopecia and ADHD. I still have Generalised Anxiety Disorder. I. Still. Get. Sad. But there is light and hope and this is what I allow to define me.
If you feel like you are in the dark, that there is nowhere to turn, that things will never improve then please speak to someone. A doctor, a friend, a family member, a compassionate stranger on the internet, Lifeline. Please ask for help. Asking for help is so hard it seems impossible but I promise you it is easier than carrying on alone. And it’s worth it. Always.
If you know someone who needs help please send this on. Ask them if they’re okay. Talk to them about Lifeline or seeking help. Listen to them. The suicide statistics in New Zealand are horrifying, especially among young people. If this post, or someone who reads this post, can help even one person then I have achieved everything I could hope for.
It will get better. It won’t always be this way. Kia kaha.
Recently, I have had the misfortune of being unwell. Very unwell. Not in a chronic or life-threatning sense, thankfully, but still unwell enough for me to have spent the last three weeks in a constant state of pain, discomfort and fatigue. I have a kidney stone. Like I said, not life threatening. With a bit of luck the whole experience will be finished in a fortnight. But, for now, I am ill.
A kidney stone is not a visible illness. There are no physical symptoms that demarcate me. I don’t need aids to walk or see, bandages or plasters; I’m not covered in spots or bruises; I don’t have IV lines attached to me for fluids or medicine. I look healthy. But I am not. I am weak. I am tired. I am sore. I am uncomfortable. All states which are, in themselves, exhausting.
The week I was released from hospital I came home to a house devoid of food. I needed to do the groceries. It took three days of rest for me to build up the energy to take on the task. An $80 shop, missing half the things I needed, took me an hour and a half. I had to lean on the trolley for support. I had to take constant breaks. I had to walk around the supermarket intoning constantly under my breath, reminding myself how strong I was and how capable I was of finishing the task. I felt like I needed to walk around in public with a sign that announced to people I was sick. I hugged the sides of aisles and footpaths and stopped regularly to check I wasn’t walking into other people’s paths. I shuffled. I changed directions frequently. I was a constant irritation to the people around me and I knew it. But I was doing the best I could. I spent the evening in bed recovering.
I returned to work a week after leaving hospital – a whole week ahead of when my doctors had planned. I was tired of being stuck at home, tired of feeling useless and ineffective, tired of feeling I had to justify my “laziness” to people. I returned on shortened hours at my GP’s orders: If I was stubborn enough to force myself back I was damned well going to make sure I didn’t overdo it.
At work I felt, and still feel, I had to constantly act my illness. I was brought up in a household where sickness didn’t stop you doing daily necessities. I was raised to just get on and do. I go to work, I smile, I laugh, I engage, I work my butt off. I leave at 3 and go home, barely able to walk back from the bus to my house. I don’t sit at my desk and whinge about how unwell I am, tell everyone about all my tests, moan about my pain and discomfort. I share but I don’t indulge. I don’t wallow. And I worry that they think I’m pretending. That I’m milking it. That I don’t really want to be there and I’m using my recent hospitalisation as an ongoing excuse. I worry that if I don’t fake it my colleagues and managers will think I am faking it.
I make plans for my weekend and I cancel half of them last minute. I feel like the biggest pain. I have always disliked people who can’t stick to their commitments. Been infuriated by them, even. I am now one of them. I never know from one hour to the next how I am going to feel. I woke up for work one day so exhausted and sore and uncomfortable that I called in sick. I took my meds and went back to sleep, only to wake up two hours later and text my boss to tell him I would be in by lunch. This is the nature of my illness. I have no control over my body and no way to predict how I will feel. Making plans with me is now an exercise in patience and understanding. I hate myself for it.
People ask me how I am and I wonder if I should tell them the truth. Do they want the truth? I suspect they want to hear how much better I am feeling since they last spoke to me. But it doesn’t work like that. I improved markedly for two weeks on end. And then my stone moved and I took a step backwards. Healing from a kidney stone while it is still inside you isn’t a liner progression; I can’t guarantee that tomorrow in a week’s time I will be healthier than I am today. It depends on too many factors. It depends on too many intangibles. It doesn’t work the way everyone would like it to. Do you explain this to people or do you just say “I’m okay” or “I’m getting there” and hope they’re not really paying attention?
All of these are daily realities for far too many people. Good, caring people. People I wish I could help. But I can’t. They live with chronic pain and chronic illness every day. And every day they deal with the same problems I am going through. Problems intrinsically tied to their diseases and yet in no way symptomatic of them.
Health privilege is a real thing and one you only realise you had once it’s gone. I have lived with autoimmune disease my whole life but never realised how healthy and lucky I was until I became properly ill. Friends have explained to me the constant social effects of their illness. People have blogged about it and created energy-allocation theories to explain the day-to-day impacts. But I couldn’t understand until I had lived it.
I look at the world through different eyes now. I don’t assume that distracted and meandering person in the fruit and vege shop is away with the fairies. Maybe they have a kidney stone too. Maybe they have fibromylagia or ankylosing spondilitis. Maybe they have lupus. Or cancer. Maybe their dog just died. Maybe their child has chronic illness. There are too many reasons they may be behaving the way they are and mine is not to judge them or be frustrated by them. Mine is to be understanding and empathetic, the way I hope others are when they encounter me.
All too often we rush through our daily lives without stopping to think about the stories and journeys of those around us. Perhaps if we did, even just once a day, the world would be a warmer and more compassionate place.
It’s been 5 weeks today since I had surgery and I thought it might be time for an update. I have been exhausted of late (more on that later) which is why it has taken me so long to get around to this. Apologies.
The psychology is the first thing you notice changing. There are some serious uphill battles regarding the drastic changes to your body and your relationship with food. I had whole periods where I sat on the floor crying for lack of any other coping mechanism. I have always eaten to soothe my emotions – without this fallback I had nothing and it left me feeling exposed and vulnerable. Once that passed my confidence started returning. I feel like a super human these days. I walk tall with my head held high and my eyes forward, daring the world to stop me.
The physical changes are less overwhelming but probably far more noticeable to the outside world. On Sunday morning my total weight loss had reached 16.5 kilograms. 10 of that has been lost in the 5 week since surgery. I’ve dropped two dress sizes and two bra band sizes. I’ve essentially replaced half my wardrobe. I can tie my shoes again without causing myself breathing problems. I can fold myself on to furniture – something I haven’t been able to do in years. And I can walk again. Most weekends I average one, if not two, hour-plus walks. I feel healthy in a way I haven’t in almost a decade.
The surgery isn’t without its complications, though, and things haven’t always been rosy. I developed cellulitis in my hand the week after surgery and ended up being admitted to hospital to have a large abscess in my wrist drained. I’ve developed anaemia and crash most evenings when I come home from work. I throw up more than I would care to as I continue to struggle with how much and what I can eat.
But I don’t care.
I feel healthier and happier than I can remember being since I was a teenager. I want to get up. I want to go out. I want to be seen. I want to live my life and enjoy it. And that is worth every price I have paid.
The first thing I think it’s important to note is that I didn’t die. The second is that the surgeon said there were no complications and everything was fine. I also have some nice plasters on my tummy (4 or 5 of them) to show where the laproscopic instruments went in.
My predominant feeling right now is nausea. It’s a side effect of the anaesthetic and the surgery itself it is unsurprising it’s hit me the way it has. Beyond that I am merely uncomfortable and tired. My hand-eye coordination isn’t amazing either so please excuse any typos you find in this, however horrible they may be.
My plan for the day is to sleep and walk and breathe. Walking and breathing are particularly important as they help my lungs to expand after the partially collapsed during surgery (which I am told is quite normal).
The nurses here are all incredibly kind, tolerating my contrary behaviour without so much as a sigh. One even visited me every couple of hours in the night to take my lure out so I could have a shower. Showers always help me feel healthy and human.
My biggest challenge going forward will be work out just how much food/liquid fits in my now tiny tummy. A glass of water is definitely too much right now. But the only way is up (not a pun!).
I know this post may be a little controversial but it’s something I’ve been thinking about for a while. I know so many people who are happy and healthy in their own skin, no matter their size or circumstances. I love those people. I applaud those people. I am not one of those people. I believe everyone has the right to do or be what they choose. And I choose not to be fat and unhealthy anymore. I choose to improve my circumstances.
I care about my weight.
I care that I can’t tie my own shoes.
I care that I can’t sit down comfortably when I’m wearing pants.
I care that my bottom no longer fits properly in most café or public transport chairs.
I care about my self-esteem.
I care that people don’t pay attention to me.
I care that I live in a society where any of this even matters.
I care about the glazed look some people get in their eyes when they talk to me.
I care that I don’t get catcalled.
I care that I care about being catcalled.
I care that my opinion of myself has sunk so low.
I care that all of this makes me feel I am not worthy of even the lowest form or male-female attention.
I care that I can’t walk up stairs.
I care that I can’t walk along the beach.
I care that I have to make excuses when people invite me to “active” events.
I care that the thought of having to keep up with someone while walking up hill terrifies me.
I care about my body.
I care about my health.
I care about my self-image.
I care that I let myself become so unfit and unhealthy.
I care about my future.
I care that heart disease runs in my family.
I care that I feel like I may spend my life alone.
I care that I may one day be too unwell to run around with my own children.