Day 56

1 Month and 28 days in!

It’s Autumn here in Melbourne but I think I am feeling the chill a lot more! I’m constantly shivering. Methinks this is something to do with the oozing. Or the sweating. These days have been a blur of crazy symptoms. And laundry. Never done so much laundry in my life. I also started getting really swollen lips, it looked like I had sausages for lips!

My daily routine is pretty slow paced. Night time is the worse. I’ll be in bed and will spend roughly 3 or 4 hours trying to get comfortable enough to sleep. Most nights I sleep at an elevated angle. Lying horizontally makes my neck ooze and sting so badly. I will get a nap in around 5am for an hour then lie there for a bit trying very very hard to not scratch. Then around 6am ish I will nap for another 3 or 4 hours. The bit I hate the most is peeling myself out of bed. I feel so gross! For some reason I always think of Hansel and Gretel. When Hansel leaves the trail of breadcrumbs behind him in the story. If it were me, no problem. Just follow the trail of skin flakes. I’ll never get lost again!

I usually jump into the shower and the first minute is painful. The burn eventually subsides and I can just enjoy whatever comfort I can get. Sometimes I’ll be so sleep deprived I’ll lean my head against the shower wall and doze off. Then I have to cheer myself on to get out. I’ve been doing MW for a fair while now so it’s not so bad letting myself air dry. I know I will be super dry and tight but at least I know what to expect. I’ve had long hair my whole life but recently I cut my hair short to deal with TSW. Sigh. I can’t wait until I can grow it back!

The rest of my day is spent hobbling around the house, eating and doing laundry and other chores as best as I can. I shuffle around the house with my arms crossed because my joint are too sore to be stretched out. I’m very lucky because my family are quite supportive so I don’t have to much to stress about. Just recently I have even been letting some close friends come around to visit. Previously I didn’t want to see anyone! But they bullied me into seeing them haha. My bf has also been very very supportive. Even changing my bedsheets for me and buying me my favourite treats. I know it can’t be easy for him to see me suffer and I know some days I’m an absolute mess to deal with. I consider myself a very lucky girl! I’m trying to stay as positive as possible and not fall into depression. So I remind myself how lucky I am as much as possible. I think it’s important for anyone going through TSW to have support. Doing it alone is too cruel!

Ok onto progress pictures!

My arms at the moment are the easiest to deal with. I have started to keep my elbow at  90° at all times so the joint is healing nicely. 

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My legs and belly are in the middle of a flare. They just bleed and weep through clothes.

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My whole belly is covered at this point. I think my back is relatively ok. Also wearing a bra sucks. It sucks a lot.

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And lastly my face!! I think the worst out of my whole body is my neck. I find it so hard to just let it heal. And it just stings so much! Ahh!! I’m looking forward to that part healing the most!

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oh and just for reference… one day’s worth of shedding… just from my arms!!!

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How is my body even doing this!?! It creeps me out!!

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22 Comments

  1. Insomnia is the WORST! I honestly could’ve written this. It’s 1:45 and I’m awake… A fan blowing on my constantly keeps the ooze dry… But my head on the pillow makes it sweat and ooze… maddening.

  2. Hi there. Man, looking at your pictures is like looking at myself. Mine is about the same dryness: powdered grey skin everywhere. I totally understand the insomnia.. I’m lucky to get an hour or two sleep before work, then crash as soon as I get home at 5pm. It’s exhausting. Hope you find some relief soon 🙂

      • I’m about to start a course of Diprasone for a week: my skin is a mess. I’ll probably take some pics tonight before I start the treatment: you’re very brave for posting the pics on here. I’m not looking forward to the cling-wrap/sorbellene routine, or chugging extra litres of water every day, but its so much nicer than sticking to your clothes and feeling ashamed when people notice the legions. Still can’t sleep but that’s noting new haha. Nice to meet you 🙂

      • Ok I didn’t know you were still using topical steroids. From what I can remember Diprosone is a class 1 potent steroid so please please be aware that what you are putting on your skin could make it worse. That’s why there are so many blogs out there that document their steroid induced eczema like mine! I am never going back onto those creams/ointment/pills again! I’m happy to chat to you more if you want so just drop me a line whenever!! 🙂

      • well, its bad now and I have to get it improved before I go back to work. I go on it maybe 3/4 times a year when it flares up like this. I don’t know how else to improve it? Thanks for being so friendly btw! I’m fairly new to WordPress so I dunno whats going on lol

      • Interesting links, thank you for sharing them.
        My own symptoms are really dry skin/shedding (yuk) and legions from scratching. More excoriated legions on my wrists and feet, behind the knees and around my lower back and waist. I normally control it with Advantan which is way less potent and can be used on your face but when it flares up like this diprasone can clear it in a week. Are you withdrawing from moisturisers as well?

      • Yea in the last 2 years I’ve been on a few rounds of Prednisone which clears up everything in a week too but everytime I stopped it was back to the bad eczema. So I don’t think I’ll be doing that again! Yes I stopped using moisturisers about 2 weeks into my steroid withdrawal. I found it was hard initially but worked better for me long term. I was oozing so much the moisturiser never let my skin dry!

      • Ugh I’ll never go on Prednisone again. It bounces back worse than before. The main thing for me is sleep/diet. I know if I dont get enough sleep my skin starts getting worse and then I get depressed and start comfort eating lol. You cant win! I’ve never had the oozing thank god. Just ultra dry, itchy skin, then sores from scratching. I really feel for you , bud.

      • I had the oozing when I was a kid, but these days its just ultra dried our and tight. I literally couldnt work without moisturiser some days. Ive tried them all! I’m on a journey of self-improvement at the moment like you, and I’m trying out things like focused breathing exercising and yoga, multi-vitamins and supplements… there has to be other ways to manage this skin than steroids and tablets and creams I agree. I like reading your blog btw 🙂

  3. I’m going through it! There are a couple of babies going through it (Eczema & Allergies – Go Natural Health Champions Support Group-read a couple of posts of Melbournian mummies asking for places to buy things)

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