What It's Like to Live With an Undiagnosed Chronic Illness as a Full-Time Mom
My “alarm clock” goes off sometime between 5:45 and 6:15 a.m. It’s either the sound of a rambunctious 5-year-old pretending to be Tarzan or the cries of a 22-month-old waiting to be picked up from his crib.
It may sound like a typical morning for any mother as she pulls the covers off and begins another day. But for me, it’s another day of survival — a moment of picking my head up once again and praying I will have enough strength to make it through another day.
As I take a deep breath and place my wobbly legs over the side of my bed, I remind myself to look for the beautiful moments in the coming day; the moments that remind me of the happiness and blessings I have in my life.
It’s been 11 years since I was diagnosed with Hashimoto’s disease. It has also been 11 years since I was struck with a debilitating muscle condition that waxes and wanes but affects my strength every single day.
Some weeks are better than others. Some months I feel “decent.” These are the times I can shop for groceries with minimal issues and take my children to their activities with few cancellations.
But during other periods, I’m in survival mode. I rely on family members and a part-time nanny to help me through my days. The single flight of stairs in my home becomes a barrier to my being. My independence has been broken down and shred to pieces. I’m a burden to my loved ones and a hindrance to my children. At least, that’s how I feel at times.
I’ve had quite an extensive workup with world-renowned doctors and medical facilities. I’m in the midst of more testing to look for rare mitochondrial diseases, along with other unusual causes of weakness.
My once outgoing personality has been silenced as I turn down yet another invitation because I am too weak to chase my toddler around an open gym. Then the guilt sets in; the guilt that my children aren’t being as enriched as much as other children as a result of my limitations.
I speak little of my struggles to others for fear of sounding implausible. Family members listen to the fear in my voice, but even they can’t hear about it too often as they feel helpless and distraught. It becomes isolating and lonely living through this nightmare alone. I can describe in detail my heavy limbs and agonizing pain, but not one person will ever fully understand what it’s like to live life in my body.
There are times I am down as I think of what life would have been like had this nightmare never began. I try to snap myself out of these thoughts quickly and focus on the good. I daydream of better days to come. Days with a diagnosis and possibly a treatment.
I continue on day after day for my little boys who deserve a happy and carefree childhood. It may not be the life I envisioned, but it’s what I was given, and I’m going to make the most of what I have in the moment.
Although this has been a long, rough road, I’ve learned to never take a beautiful moment for granted again.
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