When I met my person at 22, fell in love and got married at 23, kids were obviously the logical next step. I was pregnant just five months after getting married. We were thrilled to welcome our first son nine months later. My pregnancy was healthy, however, my delivery was medically complicated and traumatic (both physically and emotionally). To this day I think that might have been the catalyst for everything that came next.
I have always struggled with joint pain, low energy, and mental illness. After my first baby my physical health began to cause me more noticeable problems. I began having flares an unknown condition. This included debilitating joint and muscle pain, fatigue, fevers, headaches, and more. They were only occurring every couple of months, so no one really took them all that seriously, and I continued living normally.
Two years later we decided to have a second baby, and by 27 I was the mama of two little boys. After my second delivery, this time a c-section, my physical health plummeted. My flares became more frequent, and more intense. I saw a multitude of healthcare practitioners which included various specialists and they ran more tests than I can recount. Finally, I was diagnosed with fibromyalgia.
As a young married couple, and now a stay at home mama with two kids, this news was pretty disconcerting. But to be honest, I wasn’t really surprised. My Mum had received the same diagnosis about two decades prior, and professionals often link genetics to fibro. We figured we would take it day by day, and live life the best we could when I felt well, which was still most of the time.
Shortly after my diagnosis, I joined a few online groups. I wanted to find others and connect with that understood what I was going through. That’s when I started doubting the accuracy of my diagnosis. My ever-evolving symptoms didn’t quite fit. The way that I felt in-between flares didn’t seem to be right for fibromyalgia either. Listening to all these people’s stories I continually thought, that doesn’t sound like me at all.
I ended up moving to a new town and finding a new family doctor. They are the absolute best medical practitioner I’ve ever encountered (and I’ve seen dozens). After I had my third baby I got worse – again. I saw more specialists. They ran what felt like a bajillion more tests. And after heaps of personal research, and advocating for myself, we figured out that I don’t in fact have fibromyalgia. Shocker.
My diagnosis has been changed to chronic fatigue syndrome and POTS. This is accompanied by some arthritic joints. As well as my various ever-present mental health concerns. So now here I am, 33 years old. I am a stay at home mama of three little boys. I am about to be a full- blown homeschooling mama of three little boys due to Covid, and my health is worse than ever. So what does that actually look like?
In the new year I started having flares more than once a week. This was certainly a decline from the “every couple of months” I started at in 2011. More than the “once a month” I progressed to
in 2014, and even the “1-2 per month” I was pretty steady at from 2017 on. I am still working with my healthcare team, waiting for more specialist appointments (which could take forever with the Covid backlog). I am trying new medications, and doing my best to get through each day.
My children know that their Mum is sick. Spanning almost-three to newly-nine years old, my boys see me in bed a lot. One of my boys, the little Hufflepuff of the bunch, is constantly asking me how I’m feeling. He continually tells me he hopes I feel better. Me too buddy, me too. The older two understand pretty well what’s going on. I have a condition that makes me tired all the time, and makes me hurt a lot, and that sometimes I have to stay in bed. My youngest doesn’t understand yet. He’s always asking me to play. Telling him I am too tired or don’t feel well is heartbreaking. I have to cancel plans at the last minute. We spend much more time at home than other families. That’s tough too, but by far the hardest part is the guilt I have for how much I put on everyone else’s shoulders.
My kids do way more chores than peers their age, though I don’t think that’s a negative thing, at all. They will grow up to be competent, independent humans which is exactly my goal as a mother. That “mom guilt” certainly still exists for it though. My husband, my person, is the one who suffers most of all. We approach our lives with a 100-100 attitude. Meaning the relationship, the parenting, the housework, none of it is 50-50. We are both tasked with giving 100% to these areas. Except, he more often than not has to pick up my slack, so for him it’s more like 125-75, and on flare days it’s more like 190-10.
This certainly was not the life we planned for, or dreamed of, but it’s the life we have. That’s why my goal is to take care of myself as well as I can. I try to enjoy my good days to the fullest and show our boys that we have to do the best we can with what we have. Life isn’t sunshine and rainbows, and it’s not about being lucky or unlucky either. It’s about being grateful for the good things, and working through the bad. We are creating a memorable life. We use whatever time we have and whatever capabilities we have.
Chronic illness and being disabled has taken a lot from me. It took my career aspirations and many of my hobbies. It took my energy to do many of the things I’d like to do as a young woman. It took play dates and family trips, and many of the things I’d like to do as a young mother, but it has also given me so much.
Chronic illness and being disabled has shown me so much. Unconditional love truly is “for better or worse, in sickness or in health”. It has proven that children are resilient. It has given mine lessons that will help them be more compassionate adults. It has given me new hobbies, like creating Mamahood Unbalanced, the blog I share with my best friend. It has given me opportunities to create guest posts, like this one for Melissa. It has helped me make connections. I found these with beautiful, incredible people in multiple disability-related communities. And by the time you’re reading this, it will have brought my new teammate, a service dog prospect named Fern, home to me.
Chronic illness and being disabled has completely changed the trajectory of my life. It’s changed my husband’s life, and our children’s lives, but I refuse to let it be a perpetual dark cloud over our family. Some days it’s harder to see the rainbow through the rain, but I know it’s always there.