( Martin of @paused_me (Instagram tag) asked for photos of those suffering from ME for a video he is creating for his foundation. I don’t know all of Martin’s story; I know from our friendship and following him on Instagram he is a lawyer, a talented musician, he has a gorgeous kind girlfriend supporting him every step of the way ( a beautiful partnership), he was mild/moderate until he pushed himself ( as any young 20 something would do ) partying hard-living loud on a vacation with his friends drinking, laughing, smoking pot, jumping from cliffs into crystal clear Mediterranean water. Never could he imagine that trip would be the defining moment. How could he...I know he’s tried HELP apheresis having access living in Germany. I know he is tube-fed. I know he is tenacious, wicked smart, and relentless for a cure. So when he asks - I answer. This is what I shared with him and said if used or not the process was cathartic. Thank you for coming along.) The text below is taken from my Instagram Post in response.
|Always by my side. Bed selfie.
My sweet girl Sophie
Miss her every single day
@paused_me Does so much advocacy from the confines of his bed. He asked for people with ME ( pwME) to share some photos of themselves how this disease impacts them. Perhaps being of a different generation I said I don’t have a lot - I won’t let anyone take my picture at my worst. But when I look thru my camera roll on this phone which is from 2014 I can see how many are taken from bed.
|Dark thick blood; sometime maybe 2018
Given long covid is looking at micro-clotting may give some answers
why this treatment has always been effective for me
|Home IV Saline biggest blessing and boost
Incredibly difficult veins that look good and deceive
Grateful for my friend who would do them for me
But what I notice most is the missing. The endless photos I’ve saved from things I haven’t been at; the fact that my nieces and nephew only know this one version of me. I need to think long and hard how it can be still a vital one. Today is hard. Yesterday I made it with my mom to two stores close to home when she was trying to pack for FL and realized she had nothing for hot and humid weather to walk thru Disney Land. It is the first normal mother/daughter shopping we have done in I have no idea years and years. It was important to me because after all her caregiving I wanted her to feel comfortable and nice for my parents vacation with my sisters family.
|Cornucopia for our Forgotten Plague Premiere
Never did I think I would have gotten worse
|Post UV Blood Treatment
Often worse before better - Healing Crisis
Weak - Tired - Grateful
My body is wrecked today but not beyond repair. Tonight Christine arrives from AZ leaving her family for 10 days to help me. Those who know me I’ve never been a Disney or theme park traveler; but I would have gone and popped in lol at the spa ! Another missing. Another my parents stressed that all goes okay. Another in your face reminder I can not care for myself.
|10 Days post the sore throat and "flu" that changed everything
|Today watching the world go by