Guest Post: What lupus taught me about burnout, friends and myself

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I’m Kirstie, I’m 44 years old, I have been a wife for 17 years and I am a mother of two boys, aged 14 and 10. I’m pretty run of the mill. Average… you might say. I have a day job, I dress conservatively and I live in a modest home.

If you walked into a party and I was there, I’d be the one you don’t even notice. And I probably would have already left before you took a sip of your first drink. Once upon a time parties were my jam. Now I leave as soon as I politely can.

My background is varied, the consistent thread is my passion for efficiency and organisation. In 2009 I founded a coaching business helping women to put their life and business on autopilot through highly effective systems. In the beginning, it did really well.  I had sell-out workshops, speaking gigs, group coaching programs and one-to-one clients. I absolutely loved witnessing my client’s successes! But, as life does, it threw me an unexpected curve ball in 2011…

At the time I was living a pretty hedonistic lifestyle. I wanted to be able to be, do and have it all. I had unrealistic expectations on how successful my business should be. I thought if I could just keep pushing myself…get up earlier, work longer hours, work weekends, I could maintain the great momentum I initially experienced.

Truth be told being diagnosed with a chronic autoimmune such as Lupus should have been one of the darkest moments of my life. But instead I found immense relief. 

My lifestyle – which my Mum referred to as “burning the candle at both ends” – came to a head when I woke up one morning in 2011 to find I couldn’t move.

It took two hours to get myself dressed and walk from the bedroom to the living room. It must have been a Saturday morning because my parents arrived at 10am for their weekly catch up. Initially, I dismissed how I was feeling as severe fatigue or exhaustion. I’d had a similar, less serious version of this morning on and off the past couple of months (read, years).

Everyone feels this way once in a while, I’d reasoned with myself. After all, I’d been working really hard on my fledgling life coaching business. I had two small children and the usual minutiae of running a household. I did my usual attempt to brush it off and proceeded to make the coffees and teas.

Finishing up the hot drinks, I brought them over to join my husband and parents. But as the conversation went on around me, I felt my brain function gradually deteriorate until I could barely follow the conversation, let alone converse. 

As I was sitting there quietly amongst my family, I tried lifting my arm, only to discover it could merely lift two or three inches. This was nothing like I had experienced before. This was not fatigue or exhaustion. I knew I had to say something, and quickly, before I lost the ability to speak while my body continued to shut down.

It took a lot of effort to communicate to my husband that something was awry. “What’s wrong?” he asked, looking at me completely puzzled. It was all I could do to mumble, “I dunno. But something is very wrong.”

My husband and parents decided I needed to go to the Urgent Doctors. I recall it took my husband and Dad’s help to get me to the car. At this point I was equal parts concerned and just trying to stay “with it”.

Amongst the bigger, more worrying symptoms my body was displaying, I was also experiencing  less concerning oddities. Like the sudden swelling of my finger joints. Boy, I was pleased to have had the foresight to take my wedding rings off! The skin on my legs was incredibly itchy, yet when I raised the leg of my track pants, there was nothing. My skin looked like its usual pale colour. It was that tickling feeling you get when an insect is lightly crawling on you, only it felt like it was multiple insects and they were just under the surface of my skin. 

I have a vague recollection of lying on a bed at the Urgent Doctors, with my knees up and them being a point of discussion. I think they were sore or achy. I don’t remember anything else of the consultation other than they took bloods and urine.  I had follow up appointments with my GP and an appointment with a rheumatologist.

In August 2011 I was diagnosed with Systemic Lupus Erythematosus (SLE)

I’d never heard of Lupus before. It sounded serious the way the specialist was talking. So,I become a researcher. I want to know everything there is to know about the cause, symptoms or problems and possible solutions. And this was no exception.

The doctor put me on multiple medications, including hydroxychloroquine (the anti-malaria drug Trump recklessly recommended for COVID-19). I also took Prednisone, a steroid, which blew my face up so much my skin was tight across my cheeks and I looked as though I lost my eyes.Lupus is an inflammatory, autoimmune disease where the immune system attacks its own tissue.

The brain, heart, lungs, central nervous system and kidneys are all affected. Symptoms can include fatigue and body weakness (which explains what I experienced that Saturday morning).

Mouth and nose ulcers, red and sore dry eyes, brain fog, memory loss, aches and pains are all part of the ride too. I am incredibly sun-sensitive and the sun can trigger flares. Equally, cold and damp environments set off another autoimmune in me, RA (rheumatoid arthritis). Bonus: if a person has one autoimmune, it is likely they will have another.

I learned everything I could about Lupus and overhauled my diet so I could get back to my usual self. My “usual self” was probably about a year prior to diagnosis.

Hindsight has provided me with clarity…I hadn’t been well for a long time and, like so many of us, batted away the symptoms. Heart palpitations? One too many coffees. Memory loss? Too many balls in the air, one was bound to get dropped. Red and sore dry eyes? I haven’t taken enough breaks from the laptop today. Aches and pains? Ugh, I’ve been sitting all day. I really must take up Yoga or something.

The symptoms were easily dismissed not just from current life pressures but also because our family had an incredibly difficult two years…in 24 months we encountered death, serious illness, recession, starting a business, moving house 4 times, pregnancy and hospitalisation, traumatic birth experience and subsequent PTSD and chronically unwell children. 

I pushed myself so hard to maintain the momentum my business had gained whilst pregnant. The weeks were a blur of housework and laundry. Feeding my newborn  along with giving him all his meds to stop his reflux . Kindy drop-offs and pick-ups … All night sessions with ear infection pain. Playcentre meetups in an attempt to connect with local Mums and make some new friends. All while keeping up with the needs of my clients.

I tried so hard to continue with the business but after I wrapped up (what turned out to be) my last round of coaching clients, I put everything on hold. Stress really is the ultimate energy and well-being killer. I believe stress is what triggered my autoimmune to come to the forefront.

I suffered the very burnout I was teaching small business owners how to avoid. I had destroyed my health in the quest for success and thus couldn’t maintain high performance.

 I felt like the world’s biggest fraud and failure. 

One evening, in between running the bath for my son and loading the dishwasher I confided how I was feeling to a good friend over the phone. I always looked up to her; she was one of those mum-friends that just seem to have it all together. 

She had her own business,  was a single mum and her kids were older so she was through the season of parenthood when you feel like your skin is turning inside out. My kids were being whiny and whingy. I was edgy and tense. A time of day when so much has to happen in a short space of time, at the exact time of day when everyone is tired and hungry. 

The house was chaotic and  through the clatter of a dropped Tonka truck on my hardwood floors, I heard my friend exclaim, “Just have a glass of wine!” which stopped me in my tracks. “Really?”  It was the middle of the week! And there the seed was planted. 

I had been given permission to drink no matter what day of the week it was. If it was witching hour, I was allowed to get through it with a glass of wine. How easy, cheap and convenient! Simply unscrew the cap and pour. So little effort to unwind and no costly babysitter required. Just a few sips in  and…aah, that’s sooooo much better.Bathing a one year old is much more bearable with a slight wine buzz. 

And that was the beginning of the end of my relationship with alcohol. One glass turned into two glasses, turned into a seven-days-a-week. One glass of wine provides more dopamine than chocolate, coffee and even sex. Is it any wonder it becomes the go-to coping mechanism for stressed out mums?

The longer you practice a habit and the longer it is in your life, the harder it is to recognise when it is no longer serving you and needs to be broken. 

During this season of my life, my husband and I were part of a social friend group where we would all take turns hosting Friday and/or Saturday night “BBQs or Potlucks” that were really just drinking sessions. On these nights I would most definitely consume more than one or two glasses of wine. It was more like one or two bottles, over a period of eight to ten hours.

Regardless of the justification I just made, I knew deep down I was drinking too much. I started to monitor and compare how much I was drinking, with how much others around me were drinking.  And when I discovered I was on par with them, it gave me reassurance that how much I was drinking was ‘normal’. But if you have surrounded yourself with people who drink too much, the bar for normal is skewed.

Despite the overhaul of my diet and prioritising sleep and drinking more water, I still wasn’t feeling as good as I knew I could. If I wasn’t eating packaged foods, why on earth was I frequently drinking poison? I knew it didn’t make sense.

I began to try and slow down my drinking. I was becoming anxious about nights out, given the unpredictability of my drinking habit. I tried to put “rules” in place like, “I will only drink Friday and Saturday nights”. Or, “I will only have one tonight”.

Sometimes I was really ‘good’ at sticking to my word and some nights, not at all. And after yet another binge session with friends, I decided to take 3 months off. It worked really well. Except for the fact my friend group blatantly encouraged me to drink when I had made it clear I was trying to take it easy.

When I explained what I was trying to do one of them said “I can’t support you with that”. Another said, “tell her she isn’t welcome in this house”. I was called boring and anti-social.If I was having “just one”, they did things behind my back like topping up my wine glass when I wasn’t looking. 

And yet when someone is trying to quit smoking, we don’t light a cigarette and taunt them with it. We don’t send them photos of us smoking, with a caption, “does this make you want one?” like one friend did with a photo of her and a glass of wine.

We are supportive and encouraging. I couldn’t understand it and my anxiety skyrocketed. And slowly but surely the invites began to dry up. I felt rejected, hurt and insecure. At a time when I needed my friends the most, one by one, they turned their backs. These friends were just drinking buddies. 

After my three month sober stint, I drank on and off for a while and then had a second stint of eleven months, drinking again at Christmas. It was a total of six years since my Lupus diagnosis that I finally quit drinking for good in June 2017. I am medication free for Lupus and have been for over five years.

Lupus taught me to slow down and simplify. Feed my body, mind and soul with only good things that serve me. I think we are all appreciating the simple things in life right now.

I run a blog called The Minimalist Kiwi, created with the sole purpose of sharing what has worked for me when working full time and running a business, as well as looking after children, aging parents and households. If you wish to get in contact about tools and strategies to make your life more simple, I am happy to work with you. You can find me here on my Blog, Facebook, and Instagram.