I've made it two months + of hell. TWO MONTHS! Gotta admit, I'm pretty proud. It has been one of the hardest, most bizarre, and unpredictable things I've ever been through. Ups and downs and ups and downs. Waking up to a new face every day (one equally as gross in a different way). Not knowing if simply laying down will trigger ooze or itching. Will my face crust to my pillow? Opening my eyes and feeling my face hot, swollen, and irritated.
The last few days, by far, were the HARDEST. The most excruciating. The most upsetting. I can't imagine it being worse (well, I can! My mom not being here to help me would have been worse and I will get into my mom's visit in another post).. From the most painful day so far to the sleepless and uncomfortable nights, to the oozing, to my 10 month old teething with a stomach bug and earache it was horrible. And, yet, I've said this before. "How can it get worse!?"
The strange thing about TSW is that it is NOT your typical trajectory for healing. You don't get horrible and then slowly heal. It's a roller coaster of physical and emotional ups and downs and steps froward and steps back, with the steps back being MUCH quicker and more intense than those cherished crawls forward. It's like a blow to feel that blood starting to get a little heavier...the skin getting a little hotter...and itchier...and thicker... and here comes a flare. A totally depressing blow to the psyche.
So, let's get into it.
Day 60 THE WORST!!! ROCK BOTTOM:
Oh, day 60. It started in the middle of the night. I couldn't sleep and the itch came on. This was an intense itch on my face that NEEDED to be addressed. I laid in bed WILLING myself not to scratch. Praying to take it away! Praying to just GO TO SLEEP! But I couldn't. It won. Off to the bathroom. I laid a thick t-shirt over my face and scratched the t-shirt to try to quench the unnerving and overwhelming URGE to scratch. I didn't rub the shirt because I didn't want to break the skin and I only applied as much pressure as it took to quell and not do any real damage. I lightly scratched and my eyes rolled back into my head. Like I'd waited years to finally do it. I'm assuming my leg was thumping, as well, but I was so consumed I can't be sure. I scratched my chin...my cheeks, my eyes...my forehead. Not only was it the itch, but I wanted to FEEL I spend all my days touching what feels like a mask. For several weeks my face felt like sandpaper to touch, but lately it's felt like a textured, semi-gloss painted wall. Somewhat smooth, but bumpy and certainly not my skin. The actually sensation I feel on my face is dulled. I CRAVED to feel sensation that I controlled that wasn't burning, prickling, stabbing... Uh, I digress.
When I finished scratching and felt like I could go on with life without being consumed by this itch, I peeled the shirt off..slowly... Like, literally PEELED the shirt off and looked down to see most of my skin still on the shirt. Patches of skin that were on my face were now on my shirt. Trust me, I did NOT go to town on itching! The amount of pressure I applied in NO way warranted my skin coming off... it was just ready. What was left were open wounds on my face that throbbed and ached and burned and stung. I hung my head over the bathroom sink as my face pulsated. After a few seconds of agony, I realized I was so consumed by the throb and nauseating pain that I was drooling. My hands shook. I moaned. It SUCKED. The physical pain alone would have been enough to make me feel desperate, but looking up to see the wreckage was devastating. Oh, I was sad. Now what? I have no skin!? Will it get infected!? NOW WHAT!?!? What do I do with this mess????
I assessed the damage and took shameful photos. (I've noticed in most of my photos I'm biting my lip in pain.) I didn't want infection, so I used a washcloth wet with distilled water and colloidal silver and laid it on the open skin. BURN BURN BURN STING STING. By this time, my hands were violently shaking. I'm pretty sure I was in a bit of shock. My heart was shaking my chest. I regained some composure and hobbled to the bedroom trying not to wake up Chad (It was 4 am at this point.) I quietly sat in front of the fan on my side of the bed and cried without noise as the aching amplified by the wind. After about 20 minutes, the pain had dulled and the ooze had dried. I no longer had open weeping skin. I stayed the rest of the night in the recliner with a fan blowing straight on my face so I could sleep sitting up. Laying horizontally added blood pressure to my face and the throbbing intensified. I barely slept.
The next morning's sleep deprivation hangover added insult to injury. If my mom hadn't been there to nurse my body and soul, I'm not sure what I would've done. I most certainly couldn't take care of my girls. She sat on my bed and knitted in the dark room because I didn't want light. Some people may say that light was what I needed, but the light on my wrecked outsides cast a spotlight on the sad and painful insides. The light was the only power I had left. If they cant see it, I don't have to feel it. The inspections, the comments, the gasps, the frowns... they're expected, but emotionally heavy on a day like that. I called Chad and bawled. Indecipherable bawling and apologizing for bothering him at work and for being this train wreck of a wife. Day 60 won.
Strangely, the healing picked up after day 60 and those open wounds seemed to heal up quickly. By day 63 I was feeling completely different.
Day 63:
CELEBRATIONS:
Day 60 THE WORST!!! ROCK BOTTOM:
Oh, day 60. It started in the middle of the night. I couldn't sleep and the itch came on. This was an intense itch on my face that NEEDED to be addressed. I laid in bed WILLING myself not to scratch. Praying to take it away! Praying to just GO TO SLEEP! But I couldn't. It won. Off to the bathroom. I laid a thick t-shirt over my face and scratched the t-shirt to try to quench the unnerving and overwhelming URGE to scratch. I didn't rub the shirt because I didn't want to break the skin and I only applied as much pressure as it took to quell and not do any real damage. I lightly scratched and my eyes rolled back into my head. Like I'd waited years to finally do it. I'm assuming my leg was thumping, as well, but I was so consumed I can't be sure. I scratched my chin...my cheeks, my eyes...my forehead. Not only was it the itch, but I wanted to FEEL I spend all my days touching what feels like a mask. For several weeks my face felt like sandpaper to touch, but lately it's felt like a textured, semi-gloss painted wall. Somewhat smooth, but bumpy and certainly not my skin. The actually sensation I feel on my face is dulled. I CRAVED to feel sensation that I controlled that wasn't burning, prickling, stabbing... Uh, I digress.
When I finished scratching and felt like I could go on with life without being consumed by this itch, I peeled the shirt off..slowly... Like, literally PEELED the shirt off and looked down to see most of my skin still on the shirt. Patches of skin that were on my face were now on my shirt. Trust me, I did NOT go to town on itching! The amount of pressure I applied in NO way warranted my skin coming off... it was just ready. What was left were open wounds on my face that throbbed and ached and burned and stung. I hung my head over the bathroom sink as my face pulsated. After a few seconds of agony, I realized I was so consumed by the throb and nauseating pain that I was drooling. My hands shook. I moaned. It SUCKED. The physical pain alone would have been enough to make me feel desperate, but looking up to see the wreckage was devastating. Oh, I was sad. Now what? I have no skin!? Will it get infected!? NOW WHAT!?!? What do I do with this mess????
I assessed the damage and took shameful photos. (I've noticed in most of my photos I'm biting my lip in pain.) I didn't want infection, so I used a washcloth wet with distilled water and colloidal silver and laid it on the open skin. BURN BURN BURN STING STING. By this time, my hands were violently shaking. I'm pretty sure I was in a bit of shock. My heart was shaking my chest. I regained some composure and hobbled to the bedroom trying not to wake up Chad (It was 4 am at this point.) I quietly sat in front of the fan on my side of the bed and cried without noise as the aching amplified by the wind. After about 20 minutes, the pain had dulled and the ooze had dried. I no longer had open weeping skin. I stayed the rest of the night in the recliner with a fan blowing straight on my face so I could sleep sitting up. Laying horizontally added blood pressure to my face and the throbbing intensified. I barely slept.
The next morning's sleep deprivation hangover added insult to injury. If my mom hadn't been there to nurse my body and soul, I'm not sure what I would've done. I most certainly couldn't take care of my girls. She sat on my bed and knitted in the dark room because I didn't want light. Some people may say that light was what I needed, but the light on my wrecked outsides cast a spotlight on the sad and painful insides. The light was the only power I had left. If they cant see it, I don't have to feel it. The inspections, the comments, the gasps, the frowns... they're expected, but emotionally heavy on a day like that. I called Chad and bawled. Indecipherable bawling and apologizing for bothering him at work and for being this train wreck of a wife. Day 60 won.
Strangely, the healing picked up after day 60 and those open wounds seemed to heal up quickly. By day 63 I was feeling completely different.
Day 63:
CELEBRATIONS:
- My mom... I called her a few weeks ago having what I thought was one of the hardest days I'd have and she got a ticket and came out. The timing couldn't have been more perfect because this last week has been impossibly trying and painful. BOTH of my kids were sick and my littlest has a stomach bug and wants to be held constantly. I couldn't have done it. (Will blog her later)
- It's not day 60.
IMPROVEMENTS:
- Ooze ... As of right now, the ooze has calmed down a LOT. The last several days, however, were horrible with the ooze... Just horrible.
STRUGGLES:
- Zingers ... Yesterday I started getting these nerve ending spasms in my skin. It feels like someone pinching you really hard, really quickly.
- Sleep: come on... I just want sleep.
THINGS I'M MISSING:
- Outdoors
- routine
- normal sleep hours.
Hang in there Jen. It's still early days. My thoughts are with you on this tough road. X
ReplyDeleteThanks, girl!
DeleteOh Jen! I'm so sorry! That's really rough.
ReplyDeleteI'm so happy your mom was there to help you and that she's so understanding.
Smart thinking with the fan.
As for the the Zingers, if it starts to get too intense try either an ice pack or heating pad.
(I know it seems silly to put a heating pad on your hot skin, but if cold doesn't help hot may.)
Start to pay attention to the time of these extreme flare ups. I always had an itch attack around the same time every night. I called it the Itching Hour, even though it lasted longer then an hour. If this starts happening more often try looking into antihistamines to help knock you out. I find being in that "medicated deep sleep" I don't do as much damage to my skin.
Sending You Happy Healing Thoughts
CatRStephens
It's always when I lay down and start to sweat. Not every night, but if it happens, that's when. The benadryl was giving me headaches, so I'm laying off for a bit. Yeah, it SUUUCKS.
DeleteOh man I so feel your pain. I got the itchies just looking at your pics. I think you have just a little whiles longer of this hell and then you'll move on to a lesser hell. I know it feels like forever but you will get there!!
ReplyDeleteI'm thinking so, too.... I HOPE!
Delete