Thursday, August 20, 2015

Buck Up Buttercup

I think I am turning that corner finally. It’s nice to be a little part of the daylight experience again. Those weeks I was bedridden, my husband was my lifeline to rest of the world. I started wondering if there were still other humans out there. Did a zombie apocalypse happen? Did the machines finally become sentient and take over? I wouldn’t know. I was in bed listening to Enya, focusing all my energy on breathing and surviving.

It’s been a slow climb back. Deconditioning is the enemy with POTS but MG is often the buzzkill for exercise for me. My limbs have minimal movement right now because of the weakness/paralysis, but I am working hard to convince my body it wants to move again. I've been trying to get back to walking and my stationary bike. Slow and steady. I'm moving at a turtle's pace while the rest of the world rushes around me at a hare's pace. Slow and steady.

Willing my legs to move so I can walk with my trekking poles

The last few weeks were some of the worst in some time, but I’m trying to remain undaunted and keep moving forward. The thing with bad patches is they start to feel like they will never end, like sinking into quicksand and every time you move or make effort to climb out you just sink further and further. That's a lesson I hope to learn finally: sometimes you have to just let your body sink and then eventually, with patience and diligence, you make the slow climb out. I'm almost there.

This week has been a significant improvement. I’m taking joy in little things and accomplishments:

One of my friends had a yard sale and gave away many of her vintage clothes. I love all things vintage, and I woke the morning of the yard sale knowing there was no way I could leave my bed/couch still and venture out. The thought of all those clothes sitting there made me so sad. But one of my besties, Carrie Anne, my thrifting soulmate and sister in brokenness, gathered up what she thought I might like and brought them over. My world was complete.

A pile of free vintage clothes. Who could ask for anything better?

Something really really great happened. One of my goals has been to get some of my writing in online publications. I sent out an adapted version of one of my blog posts about learning to live honestly and authentically with illness to a few places. I wrote this post about a year ago when I had to stop working and I had realized I had been living a lie for years and the gig was up. The Mighty picked it up and posted it a few days ago. You can see it here. I'm hoping to start sending more work out there. I recommend all the articles at The Mighty. They post stories from the ill, the disabled, and their allies. It's a great platform for voices that are so often invisible. 

After this article was posted and I started sharing it in some of the groups I'm in on Facebook, I had an unbelievable response and a few people started contacting me. I’ve met some new, fantastic people in the last few days because of this article.

This is my favorite unintended consequence of “coming out” with my illnesses and starting this blog: meeting kindred spirits and so many inspiring people. I had no idea that would happen. I’ve made quite a few friends along the way, those who are “kind of broken” and those who aren’t. That has been an incredible gift. 


I hadn’t left the house for two weeks, perhaps the longest of any rough patch I’ve ever had, but husband took me to the used bookstore around the corner today and I wheeled around a bit. I got a new book to feed my nerd interests. He bought a book about engraving. It was nice to see other humans and to see that the zombie apocalypse had, in fact, not happened yet.

85% of the things I own are books and vinyl records. What's one more?

So there are fewer weeds right now. It’s hard to remember during a really rough patch that things do eventually turn around. It feels like it will never end. But it usually does.

Buck up buttercup. Everything will be ok. 


  1. So proud of you and so happy to hear of your continued progress. xo

    1. Thank you so much April! You always lift my spirits :)

  2. Dear Stefanie,
    I just found your blog through your post at The Mighty about authenticity. I can relate so well and immediately shared it with friends. My dx is Mixed Connective Tissue Disease but in the early days, MG was one of the possible diagnoses drs were testing me for because some of my symptoms are very similar. Do you mind if I link to your blog from mine: ? Your article explains it so well.

    Thank you for sharing your personal experiences so publicly - it certainly helps to know that one is not alone. I hope the energy you spent trying to maintain your working world can now be spent on healing and that you come out of this rough patch very soon.

    I found that once I could admit to myself and the wider world what was going on with my health, life immediately got easier from an emotional point of view - a burden of stress was instantly lifted and I could concentrate on improving my quality of life which is my wish for you too. All the best.

    1. Hi Jodie! Thanks for stopping by. Feel free to link and share as much as you like. I've never heard of Mixed Connective Tissue Disease so I will be reading about it. I completely agree that once I was honest with everyone around me my quality of life improved. It's exhausting to live a lie. I wish I had figured that out earlier but life is definitely better since. Thanks for your lovely comments :)

  3. Thanks.
    Your words are a tonic.
    X x

  4. Hi Stephani,

    I also found your blog through you article on the Mighty. It was very poignant to me as I am trying to go into teaching while affected by mild-moderate POTS and Sjogren's. I am trying to be more honest with myself and others about what I can and can't do. I appreciate your honesty and outlook, and wish you all the best in your current slow climb back to new normal.

    1. Thank you Nicole! I wish you all the best as well. Good luck with your professional goals :)


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