Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.
MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.
From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.
My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.
While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.
I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?
People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.
The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.
Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.
I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.
I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.
My youngest son gets really emotional when he’s tired. He’s seven. They reduced recess and lunch time and do more learning in a day than when I was a kid.
As adults they tell us to get up and move for at least 10 minutes each hour and yet our kids are expected to sit a pay attention for long stretches without complaint.
By the end of the day he’s tired, hungry and doesn’t want to do anything but chill. My husband and I just had a conversation about him being little and not meaning all the mean things he says and screams when he’s tired. Is that fair though?
Yesterday he told me to never speak to him ever again, my whole life. Obviously dramatic and I knew he was tired but then other words come flying out of his mouth after he apologized which were less dramatic and more mean. As a mother isn’t it my job to teach him what is and is not ok to say, even in anger or when tired?
Allowing words like “I wish you weren’t my mom” or “you probably wish I wasn’t born” just gives way to believing it’s ok to say hurtful words to people. I’m not raising boys who become men who throw words out in frustration or anger they can’t take back once they’re out there.
Am I wrong in this thinking? Should I be allowing more space for this type of communication or should I continue to remind them that words can hurt, even if you apologize later?
As I prepare my next post, which will cover Complex PTSD, I read about therapeutic Yoga.
At first glance I was expecting just yoga, so I assumed ok that’s great, everyone should stretch, blah blah blah.
Therapeutic Yoga however is about mindfulness and not focused on poses or rather, the strictness that is “the proper pose”. Intrigued, I read more.
Using this form of yoga can help with all kinds of PTSD and mindfulness in general. Not focusing on form, it helps those who tend to be more critical of themselves, and with no mirrors it sets the environment to be gentle and nonjudgemental.
There is research on how this form of yoga, in addition to working with a therapist can greatly benefit those who suffer from PTSD.
While there are places you can find to do therapeutic Yoga, I’m personally considering doing this as part of my daily routine. As a female who grew up in a time of Barbies, super thin models and Baywatch I have often struggled with self-esteem and loving my body for what it can do, only seeing where it fails.
What do you do for mindfulness? Is there something you love and helps you? I’d love to hear it!