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. 

Update

The first half of the week was crappy.  Lots of itching, shedding big flakes and a painfully itchy scalp with hair full of flakes.  My 3 hr drive home from Newcastle required 2 pit stops just to get the handheld dyson out and vacuum the car.  It was like driving in a snow globe.  Then on Thursday things changed.  Still shedding and itchy but fine dust like flakes, and not as often.  The scalp has died down a bit as well.  I am really fed up with the mucus in my eyes affecting my vision so I have asked to be referred to an eye specialist. 

A step back? Or just a prp hangover?

Today hasn't been great, but before I explain what's happened I need to let you know some background which may, or may not be relevant. 

Yesterday was blackpool pride and I spent the afternoon/evening out drinking with friends. Not only was there booze,but there was also sun, not really sunny, but sunny enough and a lot of the day was outside.  I did cover myself in emollient before I 

So today the bed had lots of flakes in the morning. I put on my emolient as usual.  For some reason it didn't soak in as much as usual. A couple of hours later and it still felt as though the 50/50 paraffin emolient was just sitting on my skin. I also noticed my forehead felt quite hot. Later in the day I was out shopping and I suddenly got a bad stomach cramp. Without going into detail, I made it home in time. I then got a really intense flare up with big flakes as opposed to the fine flakes I have had recently. This went on for some time with me doing my best to shake and rub it off. After this I was drained and needed to go to bed for an hour.   I'm hoping/assuming all this is related to yesterday's activities. Time will tell. 

Update, but not including today

I will give a separate update for today, this update covers the rest of the week

• Skin shedding.  Fine dusty shedding. Not too bad through the night but there are flare ups ( see below)
• Scalp. No better no worse
• hands. Palms fine, back of hands scales and cuts easily.
• feet. Soles fine, .tops of feet soft red skin

• Eyes. Constantly full of mucus, flakes around eyes always there. 
• Itchiness. Not too bad most of the time apart from the flare ups (see below)
• Skin colour. The redness seems to be slightly less red than it has been. I think. 
• Energy levels. For the first few months I was constantly tired all the time. My energy levels have been slowly returning. This week I have been working away from home, I had a couple of nights out and then I was out all Saturday with friends. I still don't have the same energy levels I had before this stared, but I'm getting there. 
• Flare ups. Recently I have noticed more and more I am getting flare ups, a couple a day.  I get unbearably itchy and have to shake off as much shedding skin as I can, this can be a lot, and can take up to 30mins. I then add emollient 

Eye worms

Eye worms is my name for the irritating strands of goo that build up below the lower eye lid.  Easily removed with a cotton bud.  currently checking every few hours for new ones

Update with some improvement

• Skin shedding.  There are still a lot of flakes in my bedding each morning but I don't seem to be as flakey in the mornings as I was.  My arms had been particularly hard and crispy in the mornings but not so much now.  This morning I had noticed the flakes I did have were very fine and dusty.  Having said all that I have had a few bad flare ups during the week, and the car became so full of flakes on the drive home from Newcastle, every breath I could feel myself breathing the flakes in. 
• Scalp.  Not too bad today but it was fairly bad during the week.  I have been avoiding the scalp ointment they put on at the hospital, and using a nit comb to pull out all the flakes, but this needs to be done often. 
• Palms of hands. No problems
• feet. Swelling has died down. Soles of the feet flakey but not too bad 

• Eyes. Still bad. Lots of goo building up in the eyes and lots of flaking around the eyes
• Itchiness. Constant but not too severe 
• Other. Constant runny nose, I think this is a side effect of the new tablets. 

Tips

Tips

From what I've learned about this disease, no two people have it the same, so my tips will be pretty much useless to anyone else, but that's not going to stop me.  

• Get an NHS prescription prepayment certificate immediately.  For less than £30 you can have all your prescriptions paid for, for 3 months. The alternative will bankrupt you. 
• Primark sell white long sleeve tshirts for £3.50. Get as many as you can. You will be wearing them all the time, day and night. Because you have to wear them when you are covered in grease, they won't last long. 
• Rimless glasses?  Replace them. When you are completely covered in goo, your glasses will be too.
• Get white underwear because seeing a pile of white dust in your black pants everytime you pull them down is depressing
• Interdental toothbrushes are ideal for scraping out the dust that clogs up your phone which stops it charging
• If you can not sleep because of the constant itching, try hypnotherapy. 
• Remember, one day this will all be a bad memory
• Get the best vacuum cleaner you can afford, you will be using it many times a day and night
• When you use emollin spray, stand in the shower when you put it on, or your floor will get very slippy
• A good quality nit comb can get flakes out of your hair, but you will need to do this every few hours
• Drink lots of water
• This disease can eat away at your personality.  You can become too tired to engage with people and when you do, you can end up only talking about your symptoms.  Try and find an outlet for own personality. I blog. 
• Get to know the Facebook self help group, but keep control on what you want to share and what you want to keep to yourself. 
• Remember, one day this will all be a bad memory (this is important which is why I'm saying it twice) 

Brains!!!

Early morning zombie look. 

Tight skin on the face drags my lower eyelids down