Living with TSW – A Day in the Life of My Skin

This is an overall day in the life of my skin over the past 2 months, since I’m close to the 2 month mark of Topical Steroid Withdrawal.

Early Morning:
I used to love early morning – morning was my favorite time of day.  I still LIKE morning, but now it’s tarnished by the apprehension of what’s going to greet me in the mirror.  My alarm goes off and I gingerly run my fingers over my face and neck and around my eyes, tactilely assessing how bad the day’s flakes, dryness, and puffiness are going to be.  Wishing I could just stay in bed for days on end until my skin looks better, I drag myself out of bed and over to the mirror.  If I have puffy eyes, it is going to be in the morning, and if I have to put ice on them, my mood immediately dips a notch.  The left side of my face has always been more problematic than the right, and my left eye will get way more puffy or dry and make me look like a half-elephant.  I guess I should be glad that at least the other eye usually behaves, but the idea of looking asymmetrical, especially since I feel like everyone I talk to looks me in the eye and notices, really makes me self-conscious.  I can tell that I’m healing though, because in Month 1 of withdrawal I was waking up with puffy eyes every day, and now I don’t have to put ice on them in the morning.  My face is usually, actually not too red in the morning, but this is when it is super dry since I’ve rolled around restlessly during the night and probably rubbed off all my Vaseline I put on.

Later in the Morning:
I’m off to work after having carefully applied moisturizer and concealer and choosing an outfit that either hides my extremely red neck, or carefully applying concealer to that too.  I’m sure it would be a little better to just let the skin be free and not covered by makeup, but I’ve patch tested my concealer and it doesn’t provoke any reaction.  Also, if I don’t use any, I itch just the same, so I’ve come to the conclusion that for now, I use it in order to get by, although now I have to use it over almost my entire face.  There was a day early on before withdrawal when I was flaring where I barely used any concealer and all the people’s stares hurt my feelings.  So no more – I do what I have to do to feel human.  Now that I’m in month 2, my neck is red almost all the way around, the border stops where my neck ends and my back starts – where a t-shirt collar would start – my upper back has never had any eczema and has been a completely clear portion of my body (one of the few) throughout TSW – probably because I never applied steroids there.  Also, now my neck is so completely dry and flaky that any concealer looks really bad and emphasizes the dryness.  I either wear a high neck shirt or a scarf to work every single day.  I’ve developed a new appreciation for accessorizing with scarves – I have quite a wardrobe of them now.  They’re the only outfit accessories I can have since I had to stop wearing all jewelry – necklaces rub on my raw neck, bracelets draw attention to my rashy hands and wrists, my ears ooze and flake so earrings are out, and well, I don’t wear my wedding rings anymore since the divorce is underway.  I also have to choose shirts with extra-long sleeves since my hands are really bad.  However, this is a pretty good time of day – my second favorite time besides bathtime/bedtime.  I like being in the car driving to work, and I like arriving for the day and feeling productive, getting ready to get things done.  Because my skin has just been moisturized, it usually doesn’t itch and I’m able to put it out of my mind for the time being.

I head to the bathroom to wash my hands before I eat lunch.  I am carrying my own bar of soap from home (Dove sensitive) because my skin can’t tolerate the soap in our work’s bathrooms.  My hands are ripped up enough already, they don’t need any more irritants!  In the privacy of the bathroom stall, I pull out a tiny mirror that I always carry in my pocket, checking my face and seeing how it’s holding up.  If my face starts looking bad, I have a little emergency stash of moisturizer, concealer, and tweezers back at my desk.  I almost never pull it out, because I don’t like to obsess about my face at work.  I’ve gotten used to it and so I leave it alone.

We probably have some kind of work meeting, and I start getting more uncomfortable and dry.  I covertly try to itch places where no one will see.  I constantly tug my shirt sleeves down over my wrists so that no one will see my hands.  It’s not that I care if people SEE them, as I no longer have much shame about looking bad, but I don’t want people asking stupid questions about my skin.  This is when boredom and annoyance hit, where I start to get fed up with sitting at my desk and want to go home for the day.  This is also the time when I begin to get a little bit itchy… or, well, a LOT itchy.  I escape to a restroom stall again and give my legs and thighs a good hard scratch.  Often I scratch until my skin gets raw and oozy.  I can’t control it a lot of the time.  This is also the time when, if my eyes are going to start bothering me, now is the time that they really start to annoy me.  The skin around my eyes has been dry and tight ever since I started TSW and on occasions before that, and it starts to get very uncomfortable as the day wears on.  It doesn’t help that my work involves staring at a computer screen all day either, since my eyes always feel better on the weekends.

Late Afternoon:
Oh thank goodness, work is over.  Even though I want to pick at my face and itch it, I can resist the temptation for now because it doesn’t truly itch, and I don’t want to get all flaky when I have things to do yet.  However, I can’t wait to get home as the first thing I’m going to do is rip off all my clothes and scratch everywhere.  It’s bad, but it feels so good to itch!  I worry that even when I am done with TSW, that I won’t be able to stop itching as it will be such an ingrained habit.

Around 7 or 8 pm, I have a “skin curfew”.  Every single day around this time, without fail, my skin begins to itch in waves that do not stop and are not satiated until finally I have scratched until I am flaking and oozing a bit.  I am told this is normal for TSW and has to do with a drop in cortisol levels. This is the “please God make it stop” type of itching that I cannot distract myself from, no matter what I try.  There is no self-control or willpower on earth that could keep someone from this – I’ve tried!  Because I’ve been covertly itching the rest of me throughout the day, this “itch attack” mainly involves my face and neck.  I can somewhat divert this itch attack if I get in the bathtub and go through my routine early in the night.  Otherwise it’s a lost cause.  Very thankfully, I’ve noticed in the past few weeks that this “itch attack” has been minimized or even sometimes can be avoided.  For example I’m posting this at night around 9:30 and I managed to not go crazy clawing at my face and neck, I just itched a little bit along my jawline and then I was able to cut myself off and stop.  I consider that progress!

Time for my routine of bathing, exfoliating, moisturizing, etc.  My face and neck are dry and flaky from having gone through the entire day.  I’ve hit upon the system of rubbing olive oil on and then using very finely ground oatmeal mixed with olive oil and water to make a paste on my face and gently rub away the dry skin.  Then I rub at the skin very gently with my fingertips and more little rolls of skin come off.  I go through my other rituals of washing and moisturizing, etc. and then give myself a last look in the mirror.  Although my skin is extremely red and patchy, it at least looks clean and smooth – right before I smother it in oil and Vaseline and get all greasy.  I love nighttime because I finally get to be in bed.  I’ve been looking forward to this all day, from the time I got up.  Bed is my “safe place”, my haven, my warm cocoon.  Here I can sit alone and not have to think about my skin.  Even though TSW has messed with my sleep patterns, leaving me with many nights of lying awake until early hours, here no one is looking at me or judging me, and I’m alone in glorious privacy to finally nod off, putting another day behind me, another day closer to healing.

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12 thoughts on “Living with TSW – A Day in the Life of My Skin

  1. Amanda says:

    Ugh this sounds so hard. Thanks for sharing what your day is like, though. Eczema really can be all consuming.

    • Thanks for sympathizing! It seems ridiculous that tending to my skin or thinking about it or itching it has encompassed SO much of my time. I imagine all the other productive things I could be accomplishing, LOL, but I’ll get to do those after i am healed!

  2. Oh, man….. I feel for you girl. This is a great post! I love seeing “A day in the life of” type stuff. Really gives people a good idea of everything people with these issues have to go through

  3. Thank you for sharing your day in the life story. It’s a relief to know that what you’re going through isn’t unique. I totally get what you mean about it being super difficult in resisting the itch. Even if I resist for a couple hours, it just won’t bugger off! It’s totally normal. Have you thought about doing something like knitting to keep your hands busy?

    • Knitting is not a bad idea! I don’t know how to knit but I’d definitely be up for learning how. Right now I distract myself with typing, like making these blog posts – I usually write them at night in bed when I really want to be scratching and it helps a bit to keep my hands busy!

  4. […] you refer back to my March post, “Living with TSW – A Day in the Life Of My Skin”, that pretty much encompassed what my life was like for months at a time.. TOTALLY. OBSESSED. WITH. […]

  5. Bee says:

    Hi there,

    I am experiencing tsw as well now first bad flareup. But my skin is either very red or raw or flaky or all. How did you manage to put moisturizer or concealer?
    I am trying moisturizer withdrawal as well.
    I have some calmer parts-just red occasional itchy, those I put moisturizer. Yours were like this right?

    • Hi Bee,

      My skin was also very red and flaky. I tried to very gently exfoliate at night with finely ground oatmeal and olive oil which helped. I didn’t try moisturizer withdrawal because it was just too uncomfortable. I found that using some kind of moisturizer made a decent base to put on concealer, otherwise it would look way too dry and flaky during the day. Yes, my skin was about like yours. Hope your healing is coming along well!

  6. Crystalina says:

    Hi. I’m sitting here at work, with swollen puffy eyes at mid day. I haven’t counted the months, but I’ve been going thru TSW since the month and year that you wrote this post. (Mar. 20, 2013) I put puffy eyes and tsw into the search engine and your blog post came up. I’m going to share it with some people close to me because everything you wrote is everything that I go through and feel when my skin is flaring… now. Thank you for putting it into words…..I look forward to looking through more of your blog to see how you’re doing these days.

    God Bless.
    ItchySkinWarrior in Atlanta

    • Hi Crystalina, thank you for visiting. Best vibes to you as a fellow itchy skin sufferer! I am so sorry to hear that you’ve been enduring TSW for so long. I hope you’ve gotten to have at least a few smooth points of relief (which will then get closer and closer together until one day your skin is back to normal). I haven’t made any posts in a REALLY LONG TIME because once my last post hit, my skin was pretty much near-normal and I was out enjoying life not even thinking about TSW. 2013 seems so long ago compared to now, but when I look back at pictures and posts, that suffering is vivid and real. But I am very blessed to have gone through it and come out the other side and be able to use the stories in this blog to help and encourage others. It means a lot to hear that my posts helped to empathize with what you are going through. Keep me posted on how you are doing, God bless to you as well!

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