23/10/2025
June 21st: On this sweltering summer solstice evening I managed to do a mini facial and lip exfoliation with colloidal silver and aloe vera.🍃
I felt radiant and beautiful, and more myself for a as long as it lasted.
After tackling the task of doing my full body and bed the day before, and being awake since 2 am, I'm surprised I managed this... Thank you universe for this brief moment of joy after such a long time of not catching a break in symptoms - at all - to practice self-care.
It's the little things.✨🌞🌻🌛
I have not managed to feel or look so put together since. My hair is back to being a birds nest on my head because I can’t tolerate having it brushed or I have purposely put all my energy into keeping my body clean.
Having a full on bedbath is a 3hr marathon. I need to prepare for it at least 5 days in advance (often much longer when symptoms interfere). Before changing the sheets I use Safflower oil - my only source of Essential Fatty Acids - to gradually exfoliate the skin off each body part. My arm one day, my chest and neck the next etc... It is not a pleasant experience when you are sensitive to touch, have chronic pain, limited energy and can’t easily wash off the gunky mess it creates without running water connected to a drain… but it’s the only way I can get the job done and keep skin infections away. It’s one less thing to do on the main event day, whenever it arrives. This consists of having my toenails clipped, more skin removed from feet, then washing, drying & moisturising my entire body. If that wasn’t enough, I often have to deal with my stoma and do a bag change in between, before we’ve even managed to put on any clothes or sheets. After at least an hour massaging out and cleaning up bile I’m well and truly spent. I rarely get to do my teeth and hair the same day or this would add another 1hr45+ and forcing myself to do so would make me even more unwell, especially in the following days when the delayed symptom exasperation hits me 24-48 hours later. Having my room cleaned is another ordeal. This is why I don’t get to see my friends, rarely see my family or have to neglect my hygiene to be able to do things I want to do.
