(A guest post by Vintage Courage)
INSIDE: Being ill with the flu when you’re a mum is one thing. But parenting when you have a chronic illness? That’s something else. How do you manage? Here, Holly from Vintage Courage shares her story of when mum is sick.
When us mums are ill it’s pretty hard to take a sick day. We can’t just phone our boss and tell them we’re not coming into work. Especially when our boss is only 3ft tall and entirely dependent upon us. We muddle through, doing the best we can, hoping that whatever bug it is we’re fighting, we recover from it fast.
But what if mum is sick with something other than a cough or cold? What if we have a chronic illness? What if our health issues are so debilitating that they take over our lives and make being a mum an impossible task…then what? In this week’s post, Holly Herbig from Vintage Courage is sharing her story of what it’s like to be sick when you’re a mum and the lessons she’s learned since her recovery.
Holly’s story is truly incredible and her strength and courage simply amaze me. I’d be lying if I said this post didn’t bring a tear or two to my eye and I warn you that it might make you cry too. Thank you so much Holly, for choosing to share your story with us.
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When mum is sick – Holly’s story…
“Some of our patients, only some Mrs Thompson, go on to adulthood. Some even have a child. But nothing is guaranteed.”
I don’t remember seeing the doctors face as he said these words. I don’t remember understanding what he meant or feeling the impact of their weight. Nor do I remember the room or the day or the time. But I do remember my mother’s face.
I remember the look of mute terror that froze her features and turned her skin white. My stoic, unshakeable, career nurse of a mother, was afraid. It was only in that moment that I knew I was in trouble.
At the age of 13, I went from healthy to dying in a matter of weeks. I recall very little of it, except that I had a pervasive sense of tiredness and I could never get warm. School was a blur of nausea, exhaustion and bone-aching chills. There was never enough sleep. My eyes turned yellow, my skin sagged. And food suddenly seemed unnecessary.
Within a year I had been diagnosed with a rare, and often fatal illness. I didn’t know it at the time, but the battle of my life was ahead of me. An 18-year journey through mountains that no one else could walk with me, with blind corners, unexpected dangers and a path shrouded by an unrelenting dark covering. If I had been aware of the fight, I would likely have not fought it. But adolescence is rebellious and arrogant by nature, and I had it on my side. The immature beauty of young age and a righteous attitude that refused to allow my fun to be taken away by a disease became my unexpected saving grace.
Would I have survived without that? I don’t think so.
Auto-immune hepatitis. A complex name for a complex disease. In my head, the name itself sounds cruel. Those three words conjure up so much pain and deep sorrow. But they are just words. Medical, specific and meaningless until applied to a person.
In its simplest explanation, auto-immune hepatitis is a severe illness in the ever-growing group of ‘immune conditions‘ The immune system begins to not recognise certain cells as its own, seeing them instead as an invading enemy. It goes into overdrive, attacking these cells to destroy the potential threat. It is exactly what you want your body to do when you have the flu. But it’s not what you want it to do when there is no actual virus to be attacked.
Pick an organ and imagine it being strategically attacked by your immune system. It is unstoppable, it recognises no limits. Diabetes (pancreas), Chrohn’s (bowel), heart disease (heart), Renal disease (kidneys)….. Mine? My liver. An organ you can’t live without.
My treatment? Chemotherapy…
The only treatment is not curative. It is a last-ditch effort at shutting down your body before it destroys itself. A combination of chemotherapy and steroids is used to throw a thick blanket over the immune system, blinding it from action. The steroids then synthetically prop up your body so you can carry on through life. This is no temporary treatment to destroy a tumour or malfunction. It is long-term, lasting decades. You must keep moving through life with this new regime of chemical cocktail in your system.
In stark contrast to the foreign words of my diagnosis title, the word ‘chemotherapy‘ is so commonplace these days that others have formed a bizarre sense of understanding with it. As though ‘chemo’ were a daily chore we must all undertake. A few needles here or there, vomit a little, lose your hair and hey presto, chemo works! We have forgotten that chemotherapy is a toxic chemical, a thick and deadly blanket to wipe out your body’s cells. It is a game of survival that no one would take willingly. And many do not survive it. Its side effects impact a person well beyond the initial months of sickness. Often, your body is permanently changed.
My teens were characterised by a strange mix of disease, chemo side effects, steroid side effects, surgeries, procedures, hospital stays and constant medical prodding. My arms have been pricked with needles more than 3,000 times since it began. At several points along the way, the veins in my arms simply collapsed, leaving a trail of bluish-purple bruising down my forearms.
Fighting to stay alive…
My focus always remained on attending school. If I could keep attending, life was normal. And it was, where I could manage the pretence. For 6 hours I could smile, laugh and learn. But a pretence is such a thin veneer. In truth, I could not run or play. I could not go on adventures or experience new things. In my efforts to remain alive, I lived a half-existence. Unable to stand the pity or the looks of horror when the truth of my illness emerged, I skilfully hid it, retreating away when I could not keep up the show.
I honestly don’t know how I managed it. I cannot logically explain how I endured a fight that wipes out so many while being a high schooler. But I graduated in the top 2% of my school. I worked part-time and I went to uni. I ticked all the boxes.
Like I said, adolescence is rebellious and arrogant.
The secrets of an ill mama…
I was married at 22. Young? I guess so. I had carefully constructed my decision-making around a very unspoken, but constant sense of fear at the short time limit on my life. My life had an end date on it. My days were numbered. If I was in love, I wanted to be married. If I was married, I wanted to have children. And by 23, I was pregnant with our first child.
At first I approached my pregnancy with the same arrogance with which I had tackled my disease. I was in control. I would not be an auto-immune statistic, having only one child or spending my pregnancy chained to a hospital bed. I would be absolutely fine, like every other expectant mother. My doctors tried to warn me of the potential dangers, but I was resolute – willpower was all I needed to get me through.
I lost my first pregnancy at 11 weeks. To say it was a shock….. well, that’s a drastic understatement. I was shattered. Broken. Lost and inconsolable. It felt like the cruelest message the world was sending me. Your body will always be broken. I could keep myself alive, but not cured. I could create life, but not sustain it.
They told me it was simply statistics…
One in five women on chemo miscarry. My number was up. I could just try again. I should be grateful I could do it once. But the sense of failure was so all-encompassing. The miscarriage was a spark that lit up the path I had been walking on for nearly ten years. And it illuminated the difficult road ahead. I began to realise the truth of the life I was living, acknowledging that I would not be an energetic mother. I would not be glowing and fit, I would not have a career and children. My half-life would continue throughout pregnancy and into motherhood. But instead of crushing my hopes, this realisation gave me a sense of peace. I knew how to live through all of that, I knew what to do.
I was told I would be lucky to have one child. But that limitation seemed too tight a noose for my neck. A year later I successfully had my first healthy child. Then another. And another. And although complex, my pregnancies were successful. My children are all healthy. They are beautiful and happy and radiant, as we want all children to be.
I had thought that simply carrying the pregnancies would be the biggest challenge, but I soon realised the challenge of life as an ill mama was so incredibly, crushingly difficult. As a sick teenager, I had perfected the art of balancing my body on the teetering edge of destruction. I knew just how far to push it before it gave up. I knew what I could achieve. But having children? There is no “I” in being a mother. There is only “them”.
My battle for normality…
Like all mothers, my body was on the line for my kids. No sleep, breastfeeding, recovering from pregnancy, carrying, lifting, rocking, holding. And I wanted so desperately to maintain the secrecy of my disease, as I had done for a decade already. I did not want to be a pitied mother, or a revered one. Nor did I want to be anyone’s inspirational tale or the subject of fearful gossip. I wanted only to survive and appear normal. I so desperately wanted a ‘normal‘ life for my children, I did not want them to know the restrictions of illness.
Honestly, while my three kids were all very young, life was a blur of public happy appearances and behind the scenes pain. I needed to sleep several times a day, could barely make dinner each day and an outing to the park would wipe me out for nearly a week afterwards. While other mothers at playgroups complained of sleepless nights and sore nipples, I nodded along, silently knowing that these struggles were nothing but temporary pain. They would pass. My struggles would not.
I became so depressed by the drain of living in this imbalance of illness, children and putting on a good public show for friends. It was not a charade I could continue with.
During my final pregnancy, I pulled back from my life. The pretence was becoming harder and harder to manage. Things had to give. I gave myself space to not clean as often, decided that one outing a week with the kids was good enough. I put my eldest in preschool and spent the mornings resting. We took every effort we could to calm life down. I made bulk meals only twice a week, spent many days at home on the couch and gave up the pretending.
For all our efforts, at the birth of my third child, I did not recover well. I had a major haemorrhage and 2 toddlers at home. It seemed like the exhaustion was normal. After all, who wouldn’t be tired in this situation? Except it never lessened. When the other disease symptoms began to come back, my doctor took on the serious face all medical professionals do when faced with bad news. Skilled in its passivity, it gave me the message he did not want to say. I knew what he was thinking. My disease was back in action.
Strangely, 2 years of testing showed nothing. Besides a few odd chemical levels in my blood, all was normal. Yet I was wasting away. My muscles were decreasing, my stomach was incapable of holding food, my body needed 18 hours sleep a day. I was a diseased time bomb.
Was it a new illness? Was it cancer caused by the chronic chemo? Or was it all in my head?
A light came at the end of the tunnel nearly 3 years since the walls had started closing in again. But it was not the light I had expected.
It was a cure.
We discovered my disease had switched off. Somewhere around the birth of my youngest, my disease had ‘burnt out‘, disappearing from my body. But my chemo remained. My constant illness companion. But chemo with no illness to fight is just poison. And I had been poisoning my body for 3 years, mimicking the original disease. After 18 years of treatment, I stopped chemo immediately.
I have never looked back.
For a while, life went into madness. I had freedom. I felt healthy and alive and I had a future. I had never had one of those! While my friends had spent their 20s deciding what to be when they grew up, I was suddenly doing it at 30 with three young children. It was overwhelming and thrilling. I was absolutely exhilarated with the idea of everything I could now achieve.
And I made some stupid decisions. ‘Busy‘ became my new motto. I got a third qualification (can’t say I needed that!) and returned to work. I worked 3 jobs, then bought a business. Working 80 hours a week, I still wanted to be the primary carer to my children. I cooked the dinners, cleaned the house, did the school run. I never slept.
Life fell apart. Quickly. Are you surprised? I wasn’t. I had sold my freedom for misguided adventure and I was furious with myself. My body was not coping. My mind was not coping. And my heart was definitely not coping. Like all crossroads moments, I had a choice in that season. Carry on with the busy, or give it up and enjoy my freedom for what it was, for what I had earned.
I chose to enjoy my freedom…
I sold the business. We cut most commitments out of our lives. We focused our time on being with our kids, just doing the daily joys we miss when we are too busy. Snuggling on the couch, baking cakes together, playing in the yard. These days, our weekends are spent at home playing with the kids or drinking coffee at the local cafe. We go for adventures into the forest to collect firewood or take day trips to the beach. We spend our time together. Screw the clean house. Screw the career. I didn’t fight to live for those things. I fought to live for a real existence. To be a mother to my children, a wife to my husband, a daughter to my parents.
I want the time and space to be the best friend I can be and a free heart to feel the simple wonder in the world around me. My disease forced me to live in tiredness under a dark cloud. As soon as I was free from it, I thought I needed to fill my life up with activity in order to give it purpose. But what I discovered was even less freedom. I felt less connected to my children. I felt less proud of myself and I felt as though my busyness was taking so much from my life that I was ultimately failing at everything.
If we clutter our lives up with busy schedules, we close our hearts off. We leave ourselves no space to live. If we fill our time with toxic goals and constant exhaustion, we break our bodies and our minds. And let me assure you, a broken body is not easy to repair.
One life, live it!
It is time to live in our own lives. To experience the joy of our children and our community. To go back to enjoying the simplicity of each day. We have enough to juggle just by being parents or employees or homeowners. That is enough ‘busy’. So, tighten the reins on your schedule. Let go of work a little. Cut a few activities from your week. You don’t need to do it all. In fact, you can’t do it all.
You just need to live. Life itself is the gift. Start loving it.
About the author…
Holly Herbig is a 30-something mother of 3 marvellous kidlets. She lives in Canberra, Australia, loves a great cup of coffee and rarely has normal coloured hair. She is the owner and writer of Vintage Courage, a blog about vintage fashion and empowering women to find their own confidence. As well as writing about fashion, she also covers vintage beauty, lifestyle and DIY, all with a light-hearted humour and can-do attitude.
That’s it for this post!
I’m SO honoured and thankful that Holly chose to share her story with A Simple and Contented Life. It’s encouraged me to be brave and share more about my own health struggles, my battle with breast cancer and how I managed as a mum during that time. It’s also inspired me to want to feature other mums who are juggling parenthood with a chronic illness…so keep an eye out for this in the coming months.
Did you like this post? Have you ever had to juggle an illness with parenthood? How did you cope? Let me know in the comments below! And if you have a When Mum is Sick story to share, I’d LOVE to feature you! Get in touch here.
Until next time…
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