I'm a part of a lovely, sometimes terrifying and supportive group called Just a Mommy with MS. Although, most of us have never met in real life, we support each other better than some of our closest friends. We understand the embarrassment, constant stress and guilt as a mom with multiple sclerosis.
I was shocked when I opened up to the group about my difficulty wearing sandals as my feet turn freezing and very uncomfortable in air conditioned rooms. To my surprise many moms quickly responded that they too can't wear sandals or store socks everywhere just in case they run into a frigid spot.
Next, I asked the ladies what other weird symptoms happen that those without MS have no idea about. Their feedback was overwhelming, and although I cannot relate to everyone, it has been an eye opening and learning experience of how this disease makes our lives that much harder. The conversation that it started was beyond anything I could imagine.
Tamanika Age 32, Mother of two boys. "I sleep on ice packs to keep my core cool or I do bio freeze"
Christine Age 32, Mother of 4 1/2 year old Chelsea. "Dropping everything you hold in your hand due to neuropathy. (Including shattering iPhone 2x in one month!)"
Michelle Age 36, Mother of an 11 year old. "If I am talking please let me finish my thought, because if I get interrupted it gets lost in the clouds and it will never come down."
Vanessa Age 39, Mother of two. "The feelings of guilt for just sitting all day and not getting anything done around the house. Sometimes the pain is just too much."
Lisa Age 30, Mother of four. "I NEVER, EVER allow my purse to be carried on my wrist, on the shoulder only. Otherwise pins and needles shoot up my arm."
Sarah Age 39, Mother of five boys. "I have no way of predicting if I will be able to go out or do something from one day to the next sometimes one hour to the next."
Barbara Age 39 (but feels like 69!), Mother to a 17 year old. "Always looking for the nearest bathroom."
Tanya Age 37, Mother to one daughter. "Sensory over load... It happens at times and we might not be able to take all the light and noise around. There are times where the TV, my toddler making noise, someone talking to me plus others is just too much. I have the shades drawn a lot and not because I don't want to see the neighbors."
Lisa, Age 51, Mother to five kids and grandmother to seven. "My eyes twitching at just the wrong time. Can be pretty embarrassing."
Jori, Age 47. Mother of five. "I've lost friends and family, because they don't get it, or they think we are being dramatic, or faking."
Thank you to all the above ladies for sharing their struggles. I had the opportunity to chat with many of them and I noticed a common theme, MS sucks but it is our children that keep us going every single day.
Do you have MS? Do you have random symptoms that happen to you? Please share with us below. Bringing awareness to this invisible disease is important; we need to speak up.
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- Check out my 2014 photo project How Quickly They Change.