How Chronic Illness Has Shaped My Motherhood
by Elishia Dall on Dec 05, 2023
At 23 years old I finally received a diagnosis. It had taken years to get to this point and we had all but given up hope. I’ve found doctors are only comfortable diagnosing what they understand and unfortunately my condition isn’t well understood. In fact, I feel like its one of those conditions that the scientific community has tried to ignore because it doesn’t fit neatly into a box and there is no cure. I’d been struggling with extreme periods of fatigue, brain fog, pain, and a whole bunch of other things since I was 16 all of which couldn’t be explained. It wasn’t until I went to my dentist with a persistent sore jaw and an inability to open my jaw normally, that I was sent to Victoria’s leading specialist to get it confirmed. Yep, my dentist was the one who figured it out.
I have Fibromyalgia a condition believed to be in the central nervous system, processing pain and other stimuli differently. There is no confirmed cause of Fibromyalgia, there is no one fit cure and there is no one set of complete consistent symptoms. The one thing people with Fibromyalgia share is persistent periods of pain, hypersensitivity, and extreme periods of fatigue that no amount of sleep can resolve. Doctors all have very different views of Fibro and you’d be surprised (or not) but I’ve had a few tell me it’s “all in my head”. Some have been hyper fixated on mediation as the cure, other’s therapy, and some pain killers. None of which appeal to my Fibro, I’ve tried it all and nothing prescribed has helped.
I don’t know what it’s like for other with a chronic illness or disease, but it was a bittersweet moment when I was diagnosed. On one hand having a name to what was going on was a relief but on the other it solidified an end to the dream and picture I had of my life. That sounds dramatic, but what I mean is that I now was coming to terms with the fact that everything I ever did in my life was going to also include the symptoms of Fibromyalgia. I will never know what it’s like to go through an entire day not in pain or discomfort, I will never know what it’s like to not have to plan my activities around my fatigue levels, I will never be able to be a big ball of energy for days in a row or feel refreshed from a good night’s sleep. But I have always been determined to not let it stop me.
I found implementing a consistent routine for everything I do has been incredibly helpful and I eventually got to a place where I was thriving against my Fibro. I would go to bed early, only do one big activity a day, set out weekly plants, put in place agreements at work, be realistic with expectations on my body and have a full rest day at least once a week. Control, it’s been a big part of what has helped me manage day to day.
Then I got pregnant and after the excitement, I wondered if I was going to be a good mum with a chronic illness ruling my life. Pregnancy is a wonderful thing; your body releases all kinds of hormones, and one is a relaxing hormone which funnily enough is great at relieving the symptoms of fibromyalgia. During pregnancy I felt the best I ever have, and I had energy to burn, I walked everyday three times a day and at 36 weeks I even built an outdoor table and chairs from scratch (I’ve never used power tools in my life). the entire time in the back of my mind I knew that this feeling of normality (despite my pregnancy symptoms) would end.
Three months after my beautiful daughter was born, I began to feel my Fibro creep back in. Starting with the pain and fatigue. You’d think after three months of sleep deprivation fatigue wouldn’t be something I noticed. But Fibro fatigue is different, its not just your normal exhaustion or being tired where you can sit down or nap and feel refreshed. It feels like it’s a part of your entire body, everything feels heavy, and your brain feels worn out. It’s hard to think and the best way I can describe it is as if someone has come along and suddenly drawn out every bit of energy you had in every cell. You try to sit down or nap, but somehow it only makes you feel worse and your then stripped of every bit of motivation you had to do anything. My Fibro was back.
Only this time everything was different. I now had a little girl to look after 24/7, my entire routine, schedule and life was dedicated to her needs. I can’t juggle and I’m pretty sure if I did it would be an accurate representation of how I was trying to juggle my daughters needs and my managing my fibro. Burnt out, touched out, fatigued and in pain the days were long and gruelling.
Your probably thinking, your daughter is only 9 months old how can it be that hard. Well, I happened to have the most active little girl in the world. By 6 months she was fully crawling and right now she is getting ready to walk. She loves to play, dance, and get into EVERYTHING. She is sensory seeking, incredibly curious and just a big call of energy. I love her to pieces, but boy does she keep me moving
There are days I feel like I’m letting her down because I can’t be the same mum I was yesterday. One day I may have all the energy to give her and the next I just don’t have the same energy to sing, dance and play. Some days I don’t want her touching me because I’m uncomfortable in pain, I’m overwhelmed because my nervous system is over worked from interpreting stimuli, I’m so exhausted I just want to veg out on the couch, and I can’t talk because my brain won’t form the words. It doesn’t feel fair.
A lot of the time I have found myself putting my daughters needs before my own, which sounds reasonable. However, I quickly learnt this is unrealistic. My daughters greatest need is me and if I’m completely focused on her, eventually I’m going to drop all the balls because I’ll be too worn out to catch them. I have stopped juggling, in fact I but all the balls down and began to order them on the ground in a sequence based on how they interact with each other. Because as my daughter’s mother, how I show up every day impacts how she is cared for. By putting in place self-care, periods of rest and realistic expectations for our day based on what we both can manage she gets the best of me. We have a consistent morning routine of vegging out in bed for 30 minutes (she has a little dance party on the bed and wrestles with the dog whilst I try boot my brain into gear), then breakfast, get ready, chores and finally some dance party nursery rhymes before her first nap. I plan out our days a week ahead, only doing one big activity a day and planning at home actives we can do together. We love messy sensory play!
Most importantly, I make time for the things that recharge me. Like my weekly self-care days, now broken down into smaller daily rituals and have naps every second day. I ensure I have time in my week for gardening, walking, and reading on my own. I’ve voiced my feelings to my partner and support network, utilising them to help carry the load. I try to eat healthy, take vitamins and when I am feeling burnt out, I acknowledge it rather then try to push it aside, taking things slower. Some days this means the laundry piles up, I have no idea what’s for dinner or maybe the only thing we’ve done all day is play in the playroom, but my daughter goes to bed fed, happy and loved.
Being a mum and managing my chronic illness has been the biggest challenge I’ve ever faced and I’m still learning. Again, I’ve had to let go of the idea I had of myself as a mother, but I think every mother has an image of how she will parent that isn’t exactly how she unfolds into motherhood. But that is totally fine, inflexible expectations set unrealistic goals for us as parents and when we cant meet them we feel like failure’s. That’s not how we should show up for our kids, we need to prioritise our basic self-care in order to give out kids the best version of ourselves. We wont always get that right every day, but trying is better then not trying at all.