Monday, 18 May 2015

Day 168 off Topical Steroids

Well this condition really is a very 'day-to-day' thing.

Barely a few days after my last post and I started getting worse again.

The nature of this condition is that one gets worse (a 'flare'), then a bit better (a 'break'), then worse again, and so on until one finally doesn't experience withdrawal symptoms anymore (however long that takes, for many people it takes years).

Because I have had very strong symptoms constantly since I started my withdrawal, it is hard to tell if you are in a break, that is, until you start getting worse again, and then you know you are going through a 'flare'.

I have been in a flare pretty much since my last post where my condition has been noticibly worse. I've been enduring pretty much every classic symptom: itchiness has been ramped up a few levels, scratching causes skin to form oozing wounds so I'm covered in sores, sleep disruption (though nothing as bad as the early months where I could not sleep at all), my face has gotten much more red and oozy (so devastating especially as I was so excited to see it improving just a few weeks ago) and just generally experiencing a lot of pain and misery.

Still stuck in the bath everyday.

Still need ice packs in my face pretty much all day everyday.

Currently in my sixth month of my withdrawal (bloody hell that went fast), hoping the day comes around soon where I can start to do things outside of the house again!

Thursday, 14 May 2015

Day 148 off Topical Steroids

Hello everybody!

Wow! A whole month since my last post and I finally feel like I've been making some progress.

After MONTHS of the skin on my face getting worse and worse with no relief, in the last month it has started feeling a lot better! 


Obviously it's still nowhere near back to normal but I'm feeling a lot better which is what's important and being able to see actual progress is unreal!

The rest of my body is doing ... Ok. Still rough, itchy and red but I'm generally in a lot less pain and I haven't had any oozing sores for while now that I am thinking about it. My upper body is definitely worse than my lower body. My chest/boobs are still inflamed and oozing but they are also slooooooooooowly getting a little better.

The thing that excites me the most is being able to sleep!!!!!!! 

In the last month my sleep has normalised so much and I'm sleeping better than I have for as long as I can remember. No doubt this is helping with the healing process and obviously I'm a lot less grumpy due to sleep deprivation which no doubt makes my boyfriend happy.

This process is hard and one of the things I hate the most as someone who has always been very independent is the feeling of being completely useless. A month ago a typical day for me involved not sleeping for more than an hour at a time, face and chest oozing all night, jumping in a bath the second I woke up and having to stay there all day (up to 8 hours) just to cope with the huge amounts of pain and oozing skin, getting out to have dinner with everyone, and going to bed as soon as possible so I could have the fan on my face. Also for the past five months I have required an ice pack on my face pretty much all day long to ease the burn and discomfort.

 I had a very special day this week. I ran my own bath and made my own breakfast, I only needed to stay in for two hours. I then got out and made my own lunch and did a load of laundry (and put it out) and vacuumed and made my bed. I felt confident enough to answer the door for the postie (who brought me my new ugg boots). I made dinner for everyone and cleaned up (something I have not been able to do since living with my boyfriend's family). I also only needed an ice pack on my face for a few hours which was awesome. I also may have played something like six hours of Skyrim that day (a brief three-week long obsession until I accidentally deleted my game yesterday. Totally devastated but I am a strong woman and I will endure).

I did all the things!

A month ago even doing one of these things would have been an impossible task.

So to sum up, skin still struggling, but I am making progress and starting to feel more like myself. I am actually smiling and laughing a lot more which is something I haven't really felt like doing for a long time.

Hopefully things keep getting better from here :)