My skin has gotten several times worse. It was already bad to begin with, but now it's just downright debilitating. Oozing, raw, red, flaky skin all over my face, neck and ears. Traveling all the way down my body but in lesser severity. I can't sleep, even when I take hydroxyzine (Atarax). I'm up all night. I can manage bouts of "sleep" throughout the day after 12pm. However, they're extremely disrupted due to my discomfort, pain, and itch. I can barely move my neck, and when I attempt to I feel like my skin is going to crack and tear apart. I know this is all part of the process and I've gone through this all before several times in my life. I'm ready for it to be over, but I know I still have a long ways to go. Twenty years of slathering and ingesting these foul chemicals onto my body has led to this. Now it's time for my body to repair itself and run its course. No matter how painful and distressing, I just have to keep myself positive and remember this WILL end. As unbelievable as it may seem sometimes. It's just so scary having NO IDEA whatsoever when.
I'm obsessed with finding out when... When will it calm down? When will the flare end? When will I see drastic improvements again? When will my body be done with prolonged, life-pausing flares? Most importantly, when will my skin finally be healed?
There's no way of knowing. But I still find myself reading countless blogs, ITSAN posts, etc. Trying to see if I can figure it out, even slightly, from others experiences. Trying to find out if there seems to be a way to shorten the process. These attempts are futile at best, but I can't help myself. There's a part of me that won't give in to the thought that I have absolutely no control over this. I just have to accept it and face the music though. I'm getting tired of obsessing over it, but at the same time it's so hard not think about your skin when every waking moment your reminded by every uncomfortable movement, every itch, every glance in the mirror.
This morning I got out of my bed around 9 AM to take a shower. I don't take baths because they're simply too much of a hassle for me to make. I got in and it stung for a few seconds, but nothing too bad. Overall taking a shower feels pretty good. You know, as good as one can feel when their skin resembles that of a burn victim. It's AFTER the shower when all the disaster usually takes place. Today wasn't an exception.
I get out, pat dry until I'm left with slightly damp skin, and slather on my CeraVe cream. I try to do this as fast as possible because I HATE touching my skin when it's like this. Then I blow dry my hair because I know I'm going to crawl back in bed and anything damp touching my neck is an absolute no, no. It takes me at least 15 minutes to dry my hair cause it's long and thick (another hassle of its own, especially during TSW). Then as I'm ready to get into my bed, it starts. I itch. Starts out almost calm. Almost like I'm in this strange trance. Then it escalades... until BAM, I have no self-control whatsoever. Clawing at my skin like a mad woman with my nearly non-existant nails. I scratched until I couldn't scratch anymore. I hate it. My poor face. My poor, fragile neck. Torn to shreds of their former self. Now I was left with the horrible feeling of ooze on freshly raw skin. I had to jump back in the shower again. This time I put the tap on as hot as I can make it. So terrible. I just had to calm the monster living inside my skin. Taking over me. Afterwards, I climbed out of the shower for the second time, slathered on the lotion for the second time, blow dried my hair for the second time, I finally settled in my bed, exhausted. It was now 11 AM. Two hours later. My skin was still on fire, still itchy. The beast knows no end. I think I finally fell asleep a little before 1 PM. Only for a short while, of course. It's absolute torture, this thing. I don't know how people manage to work and live somewhat productive lives during flares. Kudos to them. I simply don't have that strength within me. Not anymore at least.
To make matters worse, everything above happened after taking 40mg of hydroxyzine after my first shower. My script is for up to 4 pills (10mg ea.), up to 4 times a day. I don't take it 4 times a day though. I actually rarely take them because I am weary of all Rx drugs now. Lately though, the lack of sleep and sanity-wrecking itch have left me no choice. I wonder how large of a dose I can take at once since 40mg obviously doesn't seem to do the trick for me. Perhaps 50 or 60mg? I just need some damn uninterrupted sleep before I completely lose my mind. If it hasn't happened already... ~womp womp~
I feel your pain! I too do not know how people work during this. I took the first 3-4 months off - I am almost done with month 5. I went back to work 4 weeks ago but only 1 day a week and that is torture for me! I barely get through my shift and suffer for a few days because of it. But with loss of income, my husband had to work OT - sometimes working 60-70 hours per week. So going back 1 day helps and sometimes it helps me to focus on something besides my skin. I too obsess about my skin - but I have been in a constant flare from the beginning - my skin knows no relief. Hang in there! The tunnel ends eventually - it just sucks that we don't know when! You will have beautiful healthy skin someday soon! :)
ReplyDeleteHi Chantal,
ReplyDeleteWow, you have a gift for summing up the grief of TSW extremely well!
While I was reading I felt like these were my own words...
Your experience sounds like most days for me.
One does feel driven to the brink of insanity sometimes, like there is a monster that has taken on the form of your skin..
Also, I do the crazy trying-to-calculate WHEN your next break will come and WHEN you will be healed thing all the time!
I browse through countless blogs each day like a mad-woman, comparing experiences, my eyes glued to the computer while I scratch wildly - It's quite humorous when I think about it to be honest.
I truthfully don't know how I go to work, even though it's only two days a week.
I don't have eczema on my face, so that helps. But I'm in constant pain through the work day, always running to the bathroom to itch my legs and arms and sometimes let out a good cry.
Motivating myself to get in the car and drive to work has to be the hardest, most of the time I'm overcome with a sense of depression as I'm driving there.
These days I just really can't socialize like I used to, it's become a JOB for me, which is so sad.
I'm trying not to dread the start of school and look at it with excitement, but it's pretty hard right now.
I start my freshman year of college late August and I can picture myself now, walking between classes, sweating, itching, burning and having hundreds of kids around me.
I've had anxiety most of my life, I always have to fight the feeling that people are looking at me, laughing and judging me. Eczema only multiplies those feelings as my whole body is covered up in 90 degree weather and most kids around me are in tank tops and shorts.
My coworkers are always saying "Aren't you excited!? You're going to meet so many new friends!" And I want to say "No...I don't want any friends right now" but, I smile and nod regardless.
I'm really praying and hoping your skin gives you a break soon, but just imagine me doing the same when you're running to the shower and scratching at your skin and feel better knowing you're not alone and we share the suffering in common.
Much love and prayers!
Our healing is on the way.
Rachel