A Day in the Life of Ehlers Danlos: A Chronic Illness Blog
My day began by taking my ADD meds, this is an important part of the story. I have learned I must be very careful with these. Not in being afraid of side effect which lets be honest if you are a spoonie most of our meds side effect is death, insanity, or dismemberment. OK made up the last one but would it really surprise you? No I must be careful because I need to choose what I focus on with care. These meds aren’t kidding and I am a bit pit bully by nature.
What amazing thing did I choose to spend my well earned focus on? Solving for world peace? Working on the Beto for 2020 campaign (did you really think politics would be left out? Really?) Training my lap wolf into a perfect service dog? Nope. Not a one. I didn’t even work on my novel or character sheets. I spent 3 hours weighing the best social marketing scheduler. (It’s Buffer by the way).
I managed to do physical therapy. Hook myself to HWave for 4 hours (read review here). Go for a super short walk (thanks POTS why yes 60-134 BPM is completely normal for a sleep deprived sloth level race for less than a block. Helped the stay at home school sprite on hours worth of homework, not only am I not smarter than a fifth grader we can now safely say sixth grade is out as well. I have been going a bit feral so Kyros was kind enough to stop over to gauges my social skills since I have only been out of my bed 4 days in the last two weeks and that REALLY bites.
Mostly because I had a good day. You know the ones. That weird feeling of wellbeing. A bit of strength in the bones an odd amputation of pain. That small voice in the back of your head that wonders just how sick you really are. I even started daydreaming about travel without wheelchair. Maybe just maybe I could finish the Muldowney Method and go back to working 2 days a month, Gasp!
That was my morning. Then my wonderful amazing husband came home for part 2. We had a state of the union for our marriage the other day, we do this about once every few months. I told him that I felt like the family thinks I go into stasis when they are not needing me and I need some real time to be able to deep dive into daydreaming and writing. Wonderful man made sure I got it and took over the rest of homework duty and dinner tonight.
I had the BEST time. I went down the YouTube rabbit hole. I watched Oliver Sacks talk about the nature of hallucinations and what happens when our optic nerves get bored and throw a fit. A TED talk from Anil Seth about consciousness my favorite line? We predict ourselves into being. BELIEVE that will be in a chapter of Lady Constantine’s School For Maudlin and Mischievous Young Ladies. I am also a bit of a magic geek and one of my favorite is James Randi who has made it a life’s mission to debunk mediums and faith healers. He gave a talk about one of the faith healers he had dealt with but it was the story of a man who worked for the faith healer that got me. I really think he is going to find his way into the book as a gardener. I just love the character arc of a kid who did the tent miracle shows and is looking for redemption.
Husband remembered I had asked for some more together time that was real so we curled up and I read him a chapter of Jeanette Winterson’s book Christmas Days. Have to love a Christmas story that includes a roast turkey that could be brought back by a skilled vet.Now it is officially tomorrow and I am playing the medication game. Do I take more. How much more? I am not cool enough to die from an overdose. If I take the level I need will it interfere with what I took before. If I mess it up how long will I have to hear my mother say I told you so?