Let me start by saying this post is not meant to incite any kind of pity party. But despite the happy face I usually wear and the various ways in which I push myself, I have lived with chronic illness most of my life. Growing up I suffered from the daily symptoms of undiagnosed Celiac disease: severe stomach cramps, widespread skin rashes, and chronic joint pain until I was 15-years-old. I had my hacks for getting through it without garnering unwanted attention or worrying anyone — I would retreat to my bedroom “for a nap” at the first sign of a stomach cramp so I could suffer in silence for an hour. I would wear long sleeves in warmer months to keep my friends from seeing the havoc my skin problems were causing on my arms. Thankfully, after going gluten-free, I had a few years that were easier. And then I developed a slew of other crippling symptoms.
By the time I was diagnosed with lupus in my mid-twenties, I had perfected many tactics of hiding what I was going through. That usually meant leaving get-togethers early, canceling plans, and so on. It also meant tons of guilt and feeling like I couldn’t always be relied upon, even though I wanted to be. But as a working adult, a wife, and now a mother, I’ve had to learn to give myself some grace, while still being accountable for those who need me. Every experience is unique, and each day as a person with a chronic illness brings something different — here’s what it’s like for me.
Like with many other challenges in life, lupus brings with it good days and bad. There are mornings when I’ve slept enough at night, have been working out regularly, and for whatever other reasons, I just feel “normal.” I wake up and get out of bed, brush my teeth, tend to my daughter, and remind my husband to take his briefcase to work. I sit down at the computer, I work. I pick out an outfit, put it on, and take a long walk with the baby. Pushing the stroller feels natural and easy. Sometimes I even call a friend to join us. On days like these I often have the energy to put together dinner, clean up the kitchen counter. I move the laundry along, and work on a DIY project. I give my daughter a bath and rock her back and forth until she’s sleeping; often, I’m up for an hour or more to watch some TV with my husband. Life feels good and easy.
But then there are the other days. There are mornings when I wake up and instantly, I know. My breathing is tight. My back and bones feel like they belong to a woman much older than I am. Every joint hurts. I glance down at my feet and find them so swollen I haven’t a prayer of getting into any of my shoes. These are the mornings that set off the days when I know I’ll have to push through. It’s hard. It’s isolating. It can be embarrassing, even, at times.
As a mum I want to do everything for my child. I want her to feel pure lightness of being in my presence and never be scared. She’s too young now to know that Mummy...s in pain, but one day she’ll figure it out and I dread that day. On bad days, I have to lean on my husband (and sometimes my friends) a little more than I’d like to. I have to hand the baby off to him after the morning feeding and crawl back between the covers for an hour to let my body rest a little more, recharge just enough to make it through the day.
I keep a brave face for my girl, but it’s hard. There are moments when I need to tuck away and cry. This is when it’s good to have a reliable friend to swing by — but sometimes it means just holding it in until my hubby is home and I can create the 10 minutes of space I need. On bad days, there is no pushing of strollers. Sure, we play. I am fully capable of taking care of my child. But the energy (and the pain) associated with assembling that thing, lifting it up over the threshold to the outside, is scary. The thought of making it a mile away and feeling too weak or in too much pain to walk back is scary. The reality of being scared to take my 8-month-old on a walk is probably the scariest part of all.
I have found my grownup hacks to get through it. Fashion is important to me, but I keep backup plans in my handbag, car, or nappy bag — flats a full size up from the usual, gloves (even in summer) to warm up my hands if they stiffen, and so on. I’m also clear with the people closest to me. I’ve spoken it through with my husband. He knows about it all — the migraines, the joint pain, the crippling stomach aches. I do everything I possibly can on my own, on the good days. I fetch my own water, change every nappy, fluff pillows, and put towels away on the highest shelf. So on the bad days, when I have to ask my husband to pass me something that sits just feet away, he knows why, and he just does it.
I carve out the time that I need to do the things I have to do. In other words, I’ve had to learn to take care of myself. Each month I enrol in four workout classes per week; my particular illness is helped by activity. On days when I am not feeling my best, I still try to go, and I stay in the back row, not pushing myself as far as I would like to. I get my exercise even if it means letting other things go, because it’s the priority. As mums, we want to put everyone else first, all the time. Having a chronic illness has taught me that one way I can put them first is to make sure I’m okay, too. The whole concept of affixing one’s own oxygen mask before assisting someone else comes to mind here.
I sleep. We keep our daughter in her room at night and have from the very beginning. This was a parenting choice and one we’re glad we made. But now that I look back on her first several months of life, I realise that if we hadn’t done it, I would be a lot sicker. On the few occasions when we’ve had to co-sleep due to travel, illness, etc., I haven’t gotten more than 20-minute blocks here and there. Each time, I’ve awoken feeling like I’m dying. Immeasurably weak, incredibly sad, and incapable of doing more than fulfill my daughter’s basic needs. Thankfully, we’ve been with family on those occasions. I’ve had to pass her off so she could play and enjoy her days while I rested.
Being a mum with a chronic illness means sometimes I have to miss out on things. There have been parties, meals, and celebrations that I couldn’t make. There have been plans I’ve had to cancel, and times I’ve had to skip things to squeeze in some rest. But now that I have my daughter, living with lupus is better and easier, even as it’s harder. I have someone to do it all for. Before I had a child, it was easy to get depressed on the days when my brain felt like shattered glass and my legs didn’t work right. It was isolating and depressing being 24-years-old and having to explain away a sick day that my boss didn’t think I was entitled to. Now there is a beautiful, spirited, young lady who looks up to me. She needs her mama to be strong.
When my little girl is older and has questions, I’ll answer them. When she gets mad at me because there will be days I can’t physically do the things she wants me to, I’ll keep explaining. And praying she understands. But no matter what, every morning, even on the bad ones, there is a little extra push to hack my way through it. I’m the center of a family now, and even when I can’t shine, the ones in my orbit need me — and they let me know how much they appreciate me, despite it all.