My TSW journey - it's a difficult one

So here I am. At month 18 and flaring all over the place. The question if this is still TSW goes through my mind every day. It is very hard, I sleep like 4 hours a night. Most of the time after two hours of sleep the scratching begins and it takes hours. Hours of itch and pain! After that I can FINALLY sleep. I want to stay in bed a day and night, but I try to stay out of the bed from 12:00 pm till 0:00 am. If I stay longer in bed, I sleep until 18:00 pm and I feel like a total zombie. Waking up is horrible. My skin feels very wet and painful. I want to stay in bed!! But I know that it is not good to sat in bed for more than 12 hours. I hate the way the skin gets hot the moment you are going to sleep! My sleeping scedule: - 00:00 am - going to bed - 00:30 am - sleep for one or two hours - 02:30 am - waking up with itch, it is itch time! - 09:30 am - after itch, pain and scratching I can finally sleep - 12:00 pm - waking up MISERABLE Then I try to keep my eyes open for the next 12 hour

And yes, it became worse! I was going from going outside to complete housebound again! Also I could not sleep anymore. I really thought that it would NEVER come back! I mean, it all went so well and better and now I am housebound again. I tried a long time to keep going out, to wake up in the morning, but I just couldn't anymore. I was super tired, stressed, anxious, I totally panicked. I cried a lot, the pain and itch were terrible again!

I stopped the UVB light therapy, but it was already too late. My face flared up terribly! I was in shock! How can this be: I am 16 months in! When is it going to stop?! I felt super ill, tired and allergic to everything! And the worse part: I started to ooze again! NOOOO! I forgot how pain your skin can be! So the suffering started again! It built up very quickly, from a little rash to one big flare! And ofcourse my wrinkles, they came back!

And then I made a mistake. I went to my dermatologist and asked for UVB light therapy. I wasn't patient anymore and wanted that it would go quicker. So I started light therapy at the hospital, 3 times a week. I just wanted to give it another try, because I did it too in 2008 and went well (but i still used steriods back then). So I flared more the first 2 weeks, but after that it went really well. Until that one day that was too much for my body I guess. In 2 minutes you get all the sun you need for one day. I think that my body and immune system could not handle it anymore. It was too much for my body. I was getting colds and getting more ill and tired again. I was almost at the end of the therapy and wanted to finish it. But is was just too much!

And all the sudden it went a bit better. Being awake all day was still difficult, but I could sometimes go out for a cup of tea or something else. I was actually really feeling better, yeah! I got strange spots on my legs, but they weren't that painful. Hands and fingers are still a problem and ofcourse my face is red and these wrinkles under my eyes still made me look ill or allergic. I hated it! And magical: my scalp was healing more and more! But later that month, my wrinkles were less too! How happy, going outside without sunglasses!

O yeah, did I already told you about the itch on my scalp? Wow, it was terrible in december as well! I slept A LOT in december. Sometimes I was still in bed at 17:00 pm. Not normal? Yeah I know, but I was so tired! I had a little surgery that made me miserable. I still hope they didn't use steriods in the local anaesthesia (they used Xylocaïne)!! But I didn't know they sometimes use steriods in anaesthesia. I read later that I have should ask about it, but I didn't. I was too scared to ask after a couple of weeks. So I searched the internet about it and I don't think they did use steriods in the injection. So I slept a lot, and was able to celebrate Christmas, wasn't feeling good, but was able to be with my family. My scalp was painful and very itchy and flaky.  

Although my scalp was healing and no oozing, I hated the itch and flares on my head! Flakes everywhere!! I hated it so much! I changed shampoos, didn't wash it at all, I tried everything. But every day the terrible itch, it kept me awake. If I scratched my head was bleeding after the scratching. My face flared red every day. It wasn't my worse time, but it was definitely very itchy and painful. I slept a bit better again, was awake at night, but after scratching I could sleep. Wake up in the morning was very difficult and stayed in bed till 12:00 pm. I know, it is bad, but if you are feeling so bad you just want to stay in bed. And still: the wrinkles under my eyes :(

This month I got a little break. I was feeling a bit better and could go out of the house sometimes. I even went to a concert, which was amazing. I didn't feel well, but was happy that I was able to go. My face was still red and painful. Sleeping went a bit better too. This month I didn't make a lot of pictures, so I think my skin was okay at that point. The wrinkles under my eyes were still there ofcourse... I weared sunglasses all over 2016 I guess!!

I knew I had to be ready for a new full body flare like I had in february. And what kind of a flare... It was horrible. I was very stressed as well, because I booked a vacation and didn't want to cancel it. I thought the sun would be good for my skin. But no, it was a horrible vacation for my skin. I wanted to be in bed a lot, very tired, a lot of pain and itch. Even my neck had this wound again. It was very hard to deal with. The smell of my scalp was terrible. This whole month was terrible! After my vacation I slept for 3 weeks! This is what came from my scalp every day!

August was a very rough month. My scalp started to flare and I really had a very bad oozing on my scalp. My whole pillow was wet as I woke up in the morning. Now my scalp flared, my face, my arms, hands, knees and became more worse at the end of August. I was totally suffering again! Still had the energy to go out and do something, but I felt that I could be housebound again soon!