Post #2 of 2 ~ This photo collage is shots of #meafterME . These are very difficult for me to share, but if people who are home & bed-bound with severe illness are missing from societies view, how will Awareness of Myalgic Encephalomyelitis spread & if I do not help show the face of ME, how will the cruelty of this illness ever be understood. Now I spend everyday lying flat or slightly propped up. On good days I’m able to spend 1/3 of the day on the couch in the living room around family & @baileybun_bun . On worse days I spend the full 24 hours in my dark, quiet bedroom alone. I still smile but smiling as big as I did before takes a lot of energy, energy I do not have.
Photos: (Left to right, then clockwise around)
1. Ice pack on forehead to cool my face, this happens daily, more so in the evenings. As I’ve overdone my face grows increasingly hot in a mask-like rash & redness, burning on my face. It feels like a sunburn & also worsens with photophobia, with artificial light as well as sunlight.
2. After a month of being unable to bathe/shower (only able to freshen up with baby wipes) I finally pushed myself to shower & this was afterword.
3. A typical photo of me asleep on the couch, holding Bun-Bun, wearing my sunglasses & earplugs.
4. I was trying out #snow filters & didn’t realize how poorly I was doing until I saw this photo, exhaustion in my eyes, unable to properly hold my head up.
5. A photo of particularly severe mask-like redness that burned on my face.
6. This was a couple of days after Photo #2, still terribly suffering payback for the shower.
7. A typical sunny day for me, in sunglasses & earplugs to be able to be in the living room. With all curtains closed our living room is still light drenched. One of the reasons we bought our home. Little did we know, I’d be unable to tolerate it shortly after moving in.
8. A photo I sent Gabe one day, again not realizing how poorly I was doing until Gabe saw the photo & replied worried. (See prior post 1 of 2 for #mebeforeME )