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Hello TSW Survivors! (introduction)

Hi and welcome to my blog. This in an introduction post. I am 17,5 months into Topical Steriod Withdrawal (TSW). An illness/condition you get when you stop using steriods, like cremes or oral steriods (like prednison). I think it is time to make a blog about my journey so far and ofcourse update it further in the next months. What you need to know about me: - I am 30 years old and I am living in The Netherlands - I am 17,5 months into TSW - I have Lyme disease - English is not my native language, so mistakes will be there ;) - I did not use a lot of steriods, but tried a lot the last 9 years. So actually I used it 9 years. Not much or every day (or a longer period of time), because it never helped, so I got new ones everytime, but never used much of it. However, in 2015 I got an allergic reaction and decided to use prednison in combination with Dermovate (4) and Elidel. I used the creme every day for 4 months. That was one of the biggest mistakes of my life, because it made me ver
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Recente posts

Month 19 ~ July 2017

So... TSW Month 19!! It is still super difficult! My skin heals on some days but overall I dont feel good. Tired, still no sleep at nights, sleep during the morning and day (from 07:00 till 14:30 pm). I know it is bad to sleep during the day, but whatever I do, I just don't sleep at night!! I am still at home most of the time. I miss life, but I know I have to hold on and that it will be better. I think that my adrenals are tired, weak and I think that is the reason I dont feel well. I just dont know how to solve it! LDN I started LDN 6 weeks ago and I have to be honest. I have side effects from it. I got a terrible migraine, I have headaches, I dont sleep, I am tired and I even got some anxiety and panic attacks. For me it is difficult to "feel" if I have to take more or less. My dose is super low, started at 0,04 mg, and went up to 0,56 mg, but somehow it doesn't feel good. But I know I have to give this a chance. It can take 3 till 6 months or even longer, to se
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Month 18 ~ June 2017

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
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Month 17 ~ May 2017

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!
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Month 16 ~ April 2017

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!
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Month 14 & 15 ~ February & March 2017

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!
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Month 13 ~ January 2017

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!
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Month 12 ~ December 2016

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.  
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