Wednesday, 27 February 2013

Month One October 2012

Well it took a few days to stop the creams after what I was told. It frightened me but excited me all at once. I was basically a drug addict to the steroids and in such a routine of putting it on every day, what would tomorrow bring and how would I cope. The first day was easy, not a problem. I thought this was a piece of cake. Day two, I was getting red and a little nervous but it was bearable. Day three, ok I think Im going to die! I woke up to what I thought was someone else. My face was swollen, I was burning all over my body and hot & cold. My first instinct was to jump in the bath. Some relief. I was on my own at this stage, kids away which was good because I was starting to feel extremely ill. I didnt know exactly what I was in for but I thought well Im going to get well soon and again not knowing how long this would last. I think it was around day 5 I rang my mother in tears asking for help. When she arrive, she found me on the couch shaking, burning red, swollen and I smelt like a dump truck from the sweat pouring out of my body. She was horrified and we called the home visit doctor. She said I had a flare but never in my life have I had ezcema like this. I looked like Id been thrown into a fire and was burnt from head to toe, except for the palms of hands. The upside the pimple rash had completely disappeared but now I had a body suit of fluro red. This was the night I threw the towel in for another dose of Preds for 10 days but no creams.

During this 10 days I started to investigate a bit more and came across a website called . It gave me insight and I found hundreds of others going through the same ordeal. It frightened me even more to see the pictures and symptoms of others but what can I do but "suck it up!" I prepared myself and started again.

Holy crap! Do not do this if you have dependants, you will need a very strong network to get through because most of us are bed ridden for the first two months. I was lucky enough to have an amazing mother who stepped into my shoes and took over. Mum you are amazing! Also consult a doctor if you can find one and get on support groups they are worldly with information to help you through.

Its kind of a blur now, but mostly I remember being in the bath for hours to ease the pain and lying in bed. Eating habits were normal but the weight was flying out the window. Ok at this rate Im going to be Kate Moss before the end of the month I was thinking! My start weight was 69kg and Im 170 cm to give you an idea of proportions. Sleep? Well forget about it, there was hardly any. The sweating kept me up and the itch was insane. If I could of scratched my bones I would have, it was just crazy. I was careful not to use my nails on skin but nails on clothes to help not break the skin. In the end I chopped them off as close to the finger as I could. Then its like torture because there are no nails to ease the itch. Catch 22 yeap!

Overnight my skin became extremely dry, so by the morning I was like the Hunch Back of Notredame getting straight to a warm oil bath. Yes I was a sight! Extremely painful, everything was locked into place until the bath. Then loads of moisturising. Get that vacuum cleaner out too, the shedding skin will be everywhere and for me in a house of floorboards, well the kids thought it had been snowing...  So things you will have to endure are and you may not get everything I did, everyone is different.

* Body temp- I'd have freezing calves and feet, but crazy hot torso and freezing head. But non stop shivering all over..So heat pack on feet with bed socks and wrapped in a blanket while mum was sitting in summer clothes.
* Oozing Ears- Especially at night I could feel dripping coming out of my ears with a cracking sounds. YES foul!
* If I scratched I would oozzzzz a clear liquid. Not infection just wet.
* Flaking skin and loads of it, get the bucket out to prepare your self. I used the vacuum cleaner every morning to clean the bed out.
* Swelling everywhere. This made it difficult and painful to bend my knees and elbows. Neck was stiff and hands too. My ankles would blow up and would throb, especially at night.
* Weight loss..yippee for those who need to loose it and for those who dont make sure you eat properly and keep healthy. Keep an eye on your weight loss so you dont get to underweight.
* Itching and burning of the skin. You may look like a cherry tomato
* Shaking like Elvis. I couldnt work out if I was hot or cold at times.
* Lymph Nodes- Mine blew up to golf balls and were painful and throbbing. I have them everywhere.
* Hair Loss- girls prepare yourself, your hair may start to thin.
* Clothes- I couldnt tolerate anything but pure cotton on my skin and on really bad days I would walk around in nothing but cotton knickers.
* House bound- feeling ugly and smelly and not being able to wear normal clothes, I found comfort in every TV show I could get my hands on and movies. Facebook was a good outlet too!
*Overall Pain- The pain from the weird tingles and burn was in just terrible. Even to lie down was like having razor blades slicing my skin. Keep those pain killers handy people.
* Looking many years older than you are. The swelling causes huge winkles and creases in  your skin. This will apparently go down as the swelling goes and the itching stops.
*Blurry Vision- For me I got blurry vision. I think it was generally the swelling in around the eyes and the tightness it created. Very hard to blink!
* Sleepless nights- mainly due to discomfort and itch. Ive tried some sedatives but made me more dry in the mornings so I gave up on that and just deal with it.

The 1st photo I have attached is first thing in the morning. So swollen, I look nothing like myself. At times I felt like I had a bad botox job, I could barely open my mouth to eat. Eye brows are thinning there too..ewwwwwww
The 3rd pic, red burning skin, now this really hurts. You can probably see the lines on my neck. This is from scratching, they are fairly deep but apparently go after the withdrawal. Fingers crossed it will. 


  1. I have gone through the same ordeal. What you described is exacly what I experienced! I too went to a naturopath...I removed gluten and dairy from my diet. That was two years ago! I feel much better now and haven't touch a steroid since. THe only thing I still experience is the thick lines/wrinkles on my neck. I am hoping they will go too....did yours ever disappear? I was wondering if you knew of anything that would help. I have scoured the internet for info, but haven't found anything that I think would really help. Any info would be appreciated!

    1. Hi there

      Mine are slowly disappearing. Im finding the less I scratch the more they fade. I had terrible lines on my knees but you can barely see them. Neck lines have gone. Belly are still pretty deep and ankles too. I use pure extra virgin coconut oil on the lines. Cant say for sure if its the oil but they seem to be fading and going back to normal. I have also found since stopping my bath routine every day my skin is loosing that spongy feel to it too, so maybe that has helped too? Hope this helps in some way, its a tricky illness, everyone responds differently to different methods. I hope everything is going along great for you now. :)