At this point in time, I don’t see much progress. I’m at a slight stand still. It’s tiring, but I just have to keep going. Topical Steroid Withdrawal gives you no rest. She is a relentless bi-atch.
And, I ask anyone reading this (who isn’t going through TSW), to take charge of your health. Don’t waste it. Don’t take it for granted.
I used to be able to get out of bed and be ready to leave within 15 minutes. Now, it takes me 1.5 hours to look half decent.
My Morning Schedule
1. Spend 5 mins in bed scratching. 2. Get up and walk to the bathroom 3. Spend 15 mins assessing myself and getting excess dead skin off 4. Shake out the rugs in the bathroom and sweep up all my skin. 5. Start the bath, pour my usual stuff in it, get some water, and set up my computer on the toilet to watch as I soak. 6. Take an hour long bath (where I get to sit in all of my dead skin). 6. Get out, and spend about 15 mins putting on about 3 layers of moisture (which doesn’t last long). ** Add 10 mins if I need to baggage myself ** 7. Go into my bedroom and pick out a lounge outfit. 8. Grab my vacuum and hoover the bed due to my lovely dead skin everywhere. 9. Go back into my bathroom, grab my cleaning supplies, and clean out all the wet, dead skin that was accumulated in the tub. 10. YEA! Finally get to start my day.
Sometimes I even take 2 baths a day. So double the cleaning.
So, again, I say DO NOT TAKE YOUR HEALTH FOR GRANTED. Live your life to the fullest. I have gained almost 15 lbs now from being inactive and I absolutely hate it. I feel gross, more so than before. Be active people. I can’t wait to get back into the gym, into dancing, and into flying.
Here is my progress.
That is how wide my mouth allows me to open.
That is blood from behind my knees. I hadn’t realized it was literally dripping off of me.
Lots of lovely dead skin (and this was only a few days worth I believe)
The craziness continues. On July 25th, it will mark 6 months of this. Half of a year. I still continue to be resilient, taking on whatever comes. It’s not easy. Everyday is a struggle just to get out of bed. But, there is no alternative to beating this. Because of that, I try and keep a positive attitude. Do I have my bad days where all I want to do is curl up in a ball and cry? Of course. I’m human. But I dust myself off (literally) and continue marching on. And I COULD NOT do this without my husband. He has been my shoulder. Even when he is away, he comforts me. And through this miserable phase of my life from this condition, I still feel like the luckiest girl in the world. I have the best husband, a loving family, and a great supportive team of friends. Thank you so much to everyone who has been so loving and caring.
To anyone suffering from this: You can get past this. You will get better. You will have your life back. Fight for it. xx
Love, B. R. Wren