vestibulodynia

I haven't journaled, haven't been making art, it's been -34F wind chill days of blizzards, the apartment we moved into had bedbugs and we've been fighting them since before Halloween. I legally lost my ability to drive myself and my 3 kids places with the idiopathic cns hypersomnia and epilepsy diagnoses. This time of year is tricky bc of my miscarriage at Christmas a few years ago. Our two bedroom, 850sq ft. apartment feels claustrophobic and the holidays were sandwiched between two of my kid's birthdays. With out of pocket meds, my expenses are bigger than child support. I can't work right now and spend my days in PT and to attend specialists. Basically, I feel like even with progress, I'm barely keeping it together. And then on December 16th, I caught COVID for the 4th time and I still have it. I am so tired and discouraged and I feel stuck. Yesterday, I finally had enough energy to try to draw. My hands haven't been working right in months, after the last round of seizures, so it made me feel pleased to see this little bit of peace on paper. #EhlersDanlosSyndrome #InterstitialCystitis #Fibromyalgia #ComplexPosttraumaticStressDisorder #majordepressive #Vestibulodynia #idiopahiccnshypersomnia #Epilepsy #DishydroticEczema #Miscarriage #COVID19

I've been very slowly finding tiny sparks of joy. I've been sick for a week with not strep, not COVID, crud. I'm so ready to go back to my new normal health without flu, state of existence. The weather has been just gorgeous with the crispness of autumn in the air!

Two weekends ago I went for a brief walk with my cane in the woods I love. Last weekend I did it again but with my snowshoe poles, with a light pack. I needed to see that I could still, even a little bit. I did, and wow it was tough. I needed to stop every five minutes and no where to sit. It was beautiful though. Today I went for a walk on a trail through prairie restoration. During the week I've been walking a little, sometimes with my rollator, sometimes on a treadmill.

I've found that the time in nature brings me back to my center. That's when I feel a tiny flicker of life again. It is those moments of peacefulness that help me when I'm overwhelmed by my responsibilities, or my health. I remember and still recognize the woman I was, in the woman I am now.

I'm learning to love me again. I love that I am still adventurous at heart, and that I never give up, and that I can make beautiful things. I love that I am loyal to my family and love animals. I have a sense of humor and I'm a huge nerd! I love that I can find a way to be content and make moments enjoyable without much to work with.

I also realize now that I may not be anyone's forever person. My OCPD, my depression, cPTSD, my many health issues especially vestibulodynia would probably baffle a matchmaking algorithm, or in my case small town Mid- America. Also, while there are many fish in the sea, my ponds pretty small, like a puddle. Haha!

Knowing myself better now, I know I'm not cut out for the life I have been conditioned to pursue. It's ok though. I'm learning to accept this. This last heartbreak has been good for me to see how much of myself I gave up and how much I did to be acceptable. What I am not willing to do now.

I sometimes have a good cry and then continue excavating myself out of the rubble to build something new. Coming home revived after an afternoon of fresh air is good medicine. I highly recommend.🌻

This is a blank page. Do you see how it sparkles? This is a reflection off of my new steering wheel cover. It looks like the galaxy to me and I think it is so sparkly and beautiful. It brings me a feeling of wonder I haven't often felt. I see it better in the dark.

Part of me is angry, sad, and confused by life's twists and turns and the other side of me sees miracles, answered prayers, and moments of beauty. These stages of profound grief fill my pages with tears and screams because I can't show that side of me to anyone.

There is an expectation of needing to carry on with some dignity while the wild animal of passion and shame and desire for a different life lie below the surface of a complimentary smile.

Agency. I am so tired of people trying to help me by convincing me that if I just THINK I am better I will be better. Wouldnt that be the first thing I tried? Denial really didn't do much but to prolong my distress. It is hard enough to accept my circumstances without having to defend myself and convince well meaning people who are uncomfortable around a disabled person and need to fill the silence.

I don't need to hear that if I just try the Win Hoff method or go natural or do yoga or just relax in or take more vitamins everything will magically POOF me into a healthy and wealthy existence.

What would really help is for someone to be chill with it. THAT would help me relax. Accept WITH me what IS without trying to fix me. Just sit and be still and notice the beauty of little things.

Things I never before thought I would celebrate include: Doing a load of laundry, showering, getting dressed even if it doesn't happen until noon, going on a walk with my rollator, completing a grocery run, taking care of my pets, watering my plants, cooking a meal, and being a present parent for my children. I am thankful I can do some of these things some of the days. At first when I was told everything is a victory I was inwardly a bit skeptical (me comparing my present self to my ambitious past self). But last night I took a shower and I felt genuinely proud of myself.