Lunchtime dusting

When working in the office I have to go to the shower room several times a day to dust off & grease up. Here is the result of today's lunchtime dusting 

Islands

Islands of sparing are patches of normal skin amongst the bright red skin. These islands are a feature of Prp. I had them when the condition started but for over 2 months my body has been completely covered. Since taking the neoral the redness has gotten paler and patchy. Over the weekend it got to the stage where there were definite islands of sparing on my side :-) 

Since then the islands have disappeared. I hope they'll be back soon. 

Best way to stop flakes in hair....

Shave off the hair 

weekly update

I have said in a previous post that things a generally improving.  This is true, but it doesn't stop me having bad days.  As far as i can tell the following things cause 'bad days';

- Alcohol, it looks like one night out leads to 3 or 4 bad days

- Shower or bath.  I am having to limit my showers to one, very brief shower a week.  As soon as i get out the shower and pat myself dry, i put on loads of emollient, but that doesn't stop me flaking and itching for the rest of the day.

So with that in mind, and remembering that this week i went out drinking on Tuesday night and had a shower yesterday morning, here is my weekly update:

• Skin shedding.  wasn't bad until my night out.  The following morning it got bad and stayed bad for the next few days.  At work i spent 40 mins one day just shaking the skin off me in the shower room.  Today has ben the first day since then that the flaking has calmed down, with some exceptions (see below)
• Thighs.My thighs have started peeling, different to the flaking on the ret of my body
• Scalp. My scalp, hair and forehead have been full of scabby flakes all week.  not too bad today though.  
• hands. Not too bad, but flakey between the fingers
• feet. All good

• Eyes. Mucus, flakes, the usual. 
• Itchiness. On Friday, after the shower, i was uncontrollably itchy all over.  It really was unbearable.    
• Skin colour. Getting paler but dark red spots underneath.  
• Belly. The nurse at the hospital the other day noticed that my belly was slightly enlaged on the right side.  unlikely to be anything to do with the PRP, but illkeep an eye on it and mention it to my GP when i see him next.

By the way, I havent been able to sweat since February.  Probably not a bad thing as I cant have daily showers at the moment.     

reverse or a new cycle?

Apart from sporadic downturns, i have generally been improving over the last few weeks, since i started on the neoral.  the flakes have become finer, and the red skin has generally become paler.  the paleness is patchy and i haven't yet got any 'islands of sparing'.  An island of sparing is a patch of healthy skin, its been well over a month since i had one of those.  Anyway as the skin  has become paler i have noticed dark red spots among the paler skin.  Also while most of my skin  has improved, my head and scalp have got worse.  my scalp is painful and i can see silver scabs underneath  my hair constantly has big flakes in it and it is thinning.  

The red spots and the scabby scalp were the earliest symptoms of this disease. so whats happening?  is the disease going in reverse or is this a new cycle overlapping with the end of the last? 

Night of drink = Day(s) of flaking

Last night I went for belated birthday drinks with work colleagues.  A good night out.  Today ive been really flakey, scalp, face, torso, arms, all over.  So im guessing there is a pattern.  So I'll be avoiding the drink.

Life begins...

It was my 40th birthday yesterday and I should have been spending it in Thailand, but we cancelled because of this disease. It's just too high maintenance to cope with on that kind of holiday.  So instead we went to see Jurassic world during the day and a nice meal (not Thai) in the evening.  I also treated myself to a new necklace.  One of the things I was most upset about was the fact my skin was so sensitive I had to stop wearing my mothers wedding ring on a necklace. Well it's no where near as sensitive as it was so I am very pleased I can have my mothers wedding ring around my neck once more.