10.02.18 – 10.05.18
Overall the first 2 months were the most difficult. I felt more sleep deprived from spending the night trying to get some comfort from the symptoms I was experiencing. If I scratched, my skin would open up so easily and it was uncomfortable and sore at times. Showers stung and moisturizing stung! I was mentally and physically drained. The mental battle was more evident to me when I had to leave the house. I always do my eyebrows before leaving my home and there were times I couldn’t do them because the skin was too thick and scaley or it woud be open and3 weeping. It bruised my confidence or maybe I should say ego, or pride? Or all 3. Anyway, month 3 was more bearable for me. I still experienced most of the symptoms I have noted below but it doesn’t compare to the start of my journey. I know and feel my skin is stronger because it isn’t easily damaged from scratching and even though it has been difficult I can say my skin is slowly healing!
You can check out my progress and a more detailed description of my symptoms below.
(Just a heads up! I’ve put together a slide including pictures that may be too graphic for some individuals. So, proceed with caution I guess?)
At the start my skin shed alot! The dead skin was big enough that every so often I’d wake up during my sleep, just to dust of the bed! So sweeping the floors everyday was and still is a must. *During the 3rd month the amount and size of skin shed has reduced more than half.
In bed my body felt overheated. The heat in my neck and face were most prominent in the first month and a half. Soon after the heat in my arms became more of a problem. *The hot feeling did reduce in intensity and duration during month 3. I rarely used a cold cloth and the heat didn’t affect my sleep like it used to at the start.
Plain and simple, when I had an urge to itch I just had to go for it. Though there were times when I had to force myself to stop scratching and tearing my skin apart.
My body produces a smelly odur. Month one was the smelliest! I have a daughter who started primary school this year and a few weeks back she told me I smell like a rock. haha! To me, the odur smells like metal but metal smells better! *In month 3 the stench wasn’t always noticable. It comes and goes and the strength of the odur did vary.
some hair loss, skin looks wrinkled, some weeping skin, areas of thickened skin, open/exposed skin from scratching, extremely dry skin, darker pigmentation after damaged skin heals, fatigue/tiredness (mostly at the beginning and whenever i am sleeped deprived), and some sweating.
What helped me
keeping my nails short, wet/cold cloth for overheated skin, dry brushing, moogoo eczema and psoriasis cream, support (from my partner), and finally watching and reading others experiences and especially the success stories via youtube/blogs!
(*some improvements I experienced)