Day 143

4 Months and 23 days in!

Things have been going pretty OK, I’ve been out and about a little bit more. Feels good to have a change of scenery! Last week I spent a whole day out. Went shopping and then out to a fancy dinner to celebrate my 4 year anniversary with the boyfriend. I had an amazing time but by the end of it I was keen to get home and into my cotton pjs!!!!! 🙂

Haven’t been taking any baths although I think I can tolerate them now. I think I just prefer showers but I will have to start again soon. Sleep is still a battle so I take it whenever I can. I’ll get in a few hours around 11pm to 2am, then another ‘nap’ at 5am to 9am. I can never sleep through! Oozing is more under control. It’s just my legs and that annoying spot on my brow. Still flaking and shedding all over though. My scalp is still driving me batty but considering where I was a few months ago I really got nothing to complain about. I don’t know how I got through that stage of oozing on my scalp and matted hair. Also I noticed that my skin smells like burnt rubber. What is up with that?..Erghh..

Arms have not changed at all.

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Legs still in hell. They weep and bleed and are so painful!

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My face was doing ok but that spot on my brow still won’t stop oozing!!

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Then I went outside for a bit and it completely slashed my face 😦 So dry and flakey! It’s the middle of winter here so I won’t be leaving the house again any time soon…


Still hanging in there!! Hope everyone else is doing much better than me! xx



  1. Just keep sleeping when you can! One day day you will sleep through again. I gave up trying to fight it – I just got out of bed in the middle of the night otherwise I lay there scratching for two hours!

    4 months in and out and about, you’re doing brilliantly – glad you got to celebrate your anniversary 🙂

    xx Ruby

  2. Hey girl we gotta hang out sometime! Congrats on four years! I highly recommend not fighting on sleep like you are. Watch TV till you’re tired then sleep till whenever even if it’s 2pm. Good luck! Hope it keeps getting better!

  3. Your poor legs! Congratulations on reaching 4 months, it is very trying stuff. Your face is looking so much better now – no more wet patches. I hope you continue to improve each day. Take care, Louise (Josh’s Mum) x

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