Thursday, August 9, 2012

91 Days: Itching + No Sleep

I would really like to STOP ITCHING for one whole day. That would be AMAZING. I am up, once again, in the middle of the night because I woke up scratching and itching ALL OVER, writhing around trying to do a full body scratch on my full body itch. I have to get up and get ready to go to work in a few short hours and I just cannot get any sleep. I am sure I have claw marks all over me, and just my luck, it's picture day tomorrow. Fantastic. Don't even ask me why it's picture day, it's so stupid but they think ugly red face clawmarked me is going to smile pretty for the camera. YEAH RIGHT.

I wish I could take a few months off my job until this is OVER. It's not fair, I just want a normal life and normal skin and mostly I WANT TO STOP ITCHING. It's just SKIN. It should NOT take this long. And I've barely made a dent in how long it will probably take. I feel like it's impossible to describe how impossibly terribly itchy this is because it sounds so petty. "Itchy" sounds like the most petty symptom ever, completely eye-rolling, like it's not like I have a colostomy bag or I'm missing an arm or something. But it's like a parade of fire ants crawling over every inch of my body all the time, no matter where I am, all the time and it's terrible and it itches and so I scratch it and then it burns or bleeds and then it itches all over again and I can never get it to stop or even just simmer down.

And I'm so ugly. Again another petty symptom, but you walk around town looking like this and see if you're rolling your eyes.

I seriously do not know how I have a boyfriend right now or why my friends still talk to me. All I want to do is curl up in a tub of oatmeal and fall asleep for the next month. I'm so tired. Every day I wake up and I just want to go back to bed. And when I'm at work, I just want to take a nap. And when I get home, I want to sleep forever but I can't even do that because who can sleep when you're this ITCHY?

This is the stupidest syndrome ever because there's no real timeline. Sometime, many many many many months from now, you'll look better. And many years from that, you'll be better. And okay, it still might show up sometime for no reason even many years from now but hey! It could be worse. You could be a hemophiliac, so look on the bright side, yeah?

And every time I type the word ITCHY, I'm reminded about how stupid and petty this symptom looks. I wish the word itchy didn't seem so slight because ITCHY just doesn't seem like anything unless you're going through this and then it's everything all the time and it's horrible but I feel stupid saying anything about how terrible it is because..."So what, it's just a little itch." But it's not, it's so much and so much worse than that, and there's no way to convey that unless you have this.

I know I am just blowing everything out of proportion and looks don't matter and this too shall pass and blahblahblah but it is awfully freaking hard to see how this is EVER going to pass when I am STUCK in the same spot dayafterdayafterday. ITCHY. RED. HURTING. Zero improvements.

Every day I want to slather stupid toxic topical steroids over every inch of my body and give up. I don't care if it won't work forever and right now I do not care that it's poison. I just want to slather it on and let it sink in. I am so tired of fighting this. I am tired of not sleeping because of the itch, I am tired of the pain, I am tired of being ugly, I am tired and I am thisclose to giving up. Why am I losing months of my life to my stupid skin? How is this fair?

Tonight I am just terribly exhausted.


  1. Hey Brista - I don't normally post on these blogs, but I just wanted you to know that I REALLY appreciate you maintaining a public diary about this, because people like you who share your experiences with TSW really help people like me who are going through the same hell. I am nearly through month #6, and I can assure you that it has f*cking sucked just as much for me, and it still does. I haven't even had the luxury that others have, with "cool" days, as I have had basically one flare that has gotten progressively worse since day one of withdrawal and probably peaked about a month ago. Now I am just maintaining at this peak and feeling like crap, but slowly I think I am starting to see tiny little bits of progress. Anyway, I just wanted to encourage you to hang in there and keep sharing. You WILL get better! I wanted you to know that more people than you think are reading your journal and are able to better cope with this hell because of your efforts. I also wanted you to know that none of your symptoms are trivial at all. It is a special kind of hell that only those of us who are experiencing can really fully appreciate. Don't give up, and you will be so much better for it on the other side. On a side note, I have found meditation to help me block the itchiness/burning.

    Chang from California

  2. Hi Brista,

    I too would like to commend you for your contribution to this process. I came across your blog and my heart sank as I read your words...I have felt all the same things as you. All of them. I think anyone who has been through this can understand the trauma and the struggle of it all. You are not blowing it out of proportion. I was in the middle of writing my thesis when I decided to try withdrawal and I can tell you the day I wrote to my supervisor to try to explain that I was sick...yeah, saying that I had "itchy skin" doesn't carry the same weight as other disease, so I understand the tendency to think you are over-reacting. But you are not.

    Unlike the others, I am not a withdrawal success story. I caved. I only lasted 3 weeks, so the fact that you are at 3 months is already an incredible feat. Although my eczema prior to quitting was bad, those three weeks of withdrawal were HELL and have taken me 3 months to heal. My complication was that I ended up with a pretty widespread sub-cutaneous skin infection. The day I went to the doc for help my legs were so swollen I couldn't get my jeans on.

    Anyway, I am not writing to you to encourage you to go either way, just to say that I understand. I was lucky to find a dermatologist who really focuses on barrier repair, and to my shock he didn't treat me with anything other than 1% hydrocortisone. I had extreme doubts that someone like me who had been using betamethazone all over like a moisturizer prior to withdrawal (eczema was so widespread) could possibly find any relief with hydrocortisone. Well, turns out he compounded it with urea and glycerine in a plain base....and here I am, practically better. It was gradual, and yes it involved steroids, but I chose the weaning route. And I am much more comfortable with a hydrocortisone than a betamethazone. I really had to work hard mentally on the scratching, but gradually it subsided. Not completely, but now I am at the point where the only time I might scratch is at night. I am watching my scars heal (my legs looked like I had been attacked by giant mosquitoes and then scratched them over and over...).

    So my point is that there are people out there who can help, you just have to find them. Not all derms are created equal. Plus you are right--it you are not in a position where you can quit your job and take time off, it makes it very difficult to go through the process. I am amazed at your progress already, you have incredible strength.

    The other thing I am reading a lot about is the skin barrier issue, and that most severe eczema sufferers have deficiencies in surface skin proteins (genetic mutation). This makes it difficult to retain moisture as well as increasing the access of allergens and bacteria. This is what leads to the itch. I am sure you know all of this, but I really think this is where I went so wrong. Over the summer I had neglected my skin a bit. Too much sun and salt water and not enough moisturizing. The eczema got momentum and away I went. Within 2 months my moderate eczema was full body, severe, and not responding to betamethazone. Which lead to the withdrawal attempt...and then abandonment.

    I wish you all the best in your journey, and thank you again for sharing.


  3. I really appreciate your comments, Trish and Chang. I know it will all eventually pass (and two days later, I felt MUCH better than when I posted this entry) but it's so long and the journey kind of sucks.