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June 16, 2014

Topical Steroid Withdrawal | Second & Third Month Update

(image: Pinterest)

It is time for another update since I have recently started my fourth month of TSW. I actually forgot to write about my second month so in this post I will sum up what happened in my second and third month.

In the middle of the second month, the oozing on my face went down gradually and by the beginning of the third month,  it completely stopped - finally! Such an amazing relief! It has been dry and cracked for a few weeks and a few stubborn areas such as between my eyes and around my mouth (where I used topical steroids heavily) were still oozing if I happened to scratch them, but otherwise, my face was good. I still did not want to go out until the end of the third month since I still did not really look like me but I will have taken this anytime over a raw oozy face!

The rest of my body seems to not have changed much throughout the second and the middle of the third month - mostly dry and not so itchy, but it will sometimes bleed when scratched. Not to mention those dead skin flakes all over the house, which are especially annoying in the bed since they scratch and makes my skin itch, so I have to sweep and change my bed sheets often. I also experienced a bit of feet swelling for about a week, but that was not a major problem since it was not painful - mostly itchy.

Something weird happened though - in the first month, I was always, always cold, now matter how many layers of clothes I put on or how many blankets I slept with. I was dependant on my heating blanket. In the second and third months, it seemed my body could not regulated temperature - one minute I would be cold so I would grab a vest or soemthing, but then the following minutes I would be super hot and sweaty I had to remove the vest, but the I would be cold again - it went on and on! Same in bed - when climbing in bed, I would feel super cold so I would pull up all of my blankets up to my chin, but in the following minutes I would get hot! That was incredibly uncomfortable, so I tried sleeping with a fan, which seems to have solved the problem a bit.

My hands have been a mess though. When they were dry, they itched so to not scratch them, I rubbed them instead, but then they oozed, and the ooze dried to a disgusting hard and grey crust which required all of my willpower to not pick at it. It is preferred to let ooze dry and then let the scabs fall off by themselves since the ooze is high in protein and actually promotes skin healing, but at the same time, it is so uncomfortable, itchy and just plain disgusting.

I have been avoiding baths for a few weeks now - don't worry, I make sure to spot wash myself - since the last time I had one, my whole body got incredibly itchy when I got out. I literally could not stop scratching myself, so much that I made my arms ooze and bleed - that never happened before! - to give you an idea of how hard I scratched. I am scared that this will happen again so I am putting off baths until I will feel like I really need one - in the first month, I felt like I needed to bath every day and I was only comfortable while in a bath. I never really feel dirty since I make sure to spot wash, change clothes, change my bed sheets, etc., the only thing that is bothering me is that weird metallic smell that emanates from my body that everybody going through TSW seems to experience too. Not really sure what it is due to, some say it is the ooze.

I have been experiencing extreme fatigue since the beginning of the second month, and I have not been sleeping well. I would wake up every two hours and I would toss and turn for about an hour - or more! - before being able to fall asleep again. I was constantly tired but I did not fall asleep easily. My sleep schedule was completely out of whack - I could not fall asleep before around 4:00 or 5:00 am and I would not get up until 8:00 or 9:00 pm. Since my energy level was so low, even the smallest task seemed like an insurmontable mountain - just getting out of bed was exhausting! The only things that forced me out of bed were having to go to the bathroom and hunger. I had only one meal a day since I was always sleeping (or trying to), and I made sure I was having some proteins since they are crucial in the regeneration of body tissue - even if it was just toasts with peanut butter, since I had no energy to cook. One evening, my amazing mother surprised me with a vegan lentil shepherd's pie - yum! I am so thankful to have my mother to care for me.

Since I still could not go out and see friends or basically do anything that requires walking, most of my days were incredibly boring - when I finally dragged myself out of bed, I ate, drank plenty of water and tea, watched some TV shows on my laptop, and I very recently got really into Tumblr - please feel free to follow me and send me your link!

In the third month, my energy level got a bit better - I was able to function almost normally, although I would get tired easily - and my sleep schedule also improved - I could now go to sleep at around midnight and even though I still did not sleep well, I would wake up at around 10:00 am. I was so happy to be able to enjoy the sun - I thought I would be bedbound all summer! Limited sun exposure is recommended to help heal TSW skin, so I lounged outside carefully (I can't use sunscreen since my skin is too sensitive as of now), and... a miracle happened! All of the wounds on my arms and legs disappeared! In a matter of days, the skin on my body looked almost 100% normal again. In the third month (since I was too weak to see anyone in the second month), I had a few beloved friends come to see me and bring me food and watch movies with me, which I am ever so thankful for.

Let's hope it only gets better!

4 comments:

  1. Wow c'est fou comment ca affecte toute ta vie! Une chance que tu ne vas plus a lecole aussi, cest quand meme assez long! Bien contente que ca aille mieux pour toi :)

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  2. Oh wow, I had no idea you went through all this, sounds tough... Yes, let's hope things will keep on looking up from here!

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  3. Wow Gaby, I'm so glad it is working out for you. I read your posts on TSW and I'm amazed at how you really stuck it through even though this whole experience sounds really frustrating and slow. I hope you get better soon! xoxo

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  4. I'm sorry to hear it has been such hard work but glad to see things are getting better x

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