Flakey skin leads to having a thick skin

I have read various comments from other people with prp on a dedicated Facebook group. For many of them, the most debilitating part of this disease is what other people think or say about it. It has been a large part of why some of them have had to take time off work or even quit their jobs.  I can totally understand how the opinions of others would have this effect and how it adds to the almost debilitating level of self disgust that can come with this disease.   I want to try and explain how I have dealt with these feelings so far. I want to make it clear that these are my personal coping strategies and I am not judging how others are coping. 

Having said that I haven't really had any nasty comments about my skin. Quite a few people have said something like "been anywhere nice? You've obviously caught the sun". That's not offensive so I don't take offence. Other than that the only comment I can think of is when I went to the gp one day just after being covered in emollient. Some kids looked at me and one shouted out "Oi mate, why are you all wet?"  I could have taken this to be confrontational, aggressive, humiliating but I made a conscious decision to be naive and treat it as a genuinely curiosity. I just shouted back "long story" and carried on. 

So as far as what people have actually said, it's been easy. The hard bit is dealing with what you assume people are thinking. I am looking out at the world from the epicentre of this continuous cloud of flakes. So when a flake falls down across my field of vision it looks relatively large and important. It can therefore be inconceivable to think that others haven't even noticed. The same applies to the white flakes that appear on a black tablecloth where I am sitting or the greasy emollient stains that appear at my desk. Just because it's all I see, doesn't mean it's all everyone else sees.  So how do I deal with these situations?  Well I could continuously apologise to virtually everyone I meet for leaving a disgusting trail of flakes and grease everywhere I go or, what I try to do is assume they don't notice or care. If it's that bad, wait for them to say something. This requires developing a thick skin and is easier said than done. Last week I was staying in a hotel for work and I had a really bad flaky night. By the next morning it seemed to me that every surface of my hotel room was covered in a thick layer of skin and grease. My self disgust went into overdrive and i had visions of the cleaning staff screaming as soon as they opened the door. I definitely expected an angry phone call from the hotel. Of course this hasn't happened (yet) but it can be difficult to control that self disgust and realise it might not look as bad or as important to other people. 

So it's all about dealing with the self-disgust. This can really build up from small insignificant incidents. I have found that blogging about these incidents, like stopping at a service station to get the vacuum out on the car seat, is quite liberating because I am saying this is something that is happening to me, rather than something I am doing. I don't want to come across as a victim but more importantly I don't want to feel shame at something I cant control. 

Update

A bad midweek flare up during the week while away with work. 

legs. Doing ok, especially from the knees down. Durning the flare up my thighs where peeling. 

Stomach/chest. Big areas of normal(ish) skin although this was also peeling during the flare up. Red spots among the good skin

Arms. Normal-ish skin on the inside of my arms

Head. Woken up a few times with a face that looks like I have slept in a bag of porridge oats (see yesterday's photo). Scalp varies from mild to middling levels of flakiness/scabby. 

Eyes. Still the same. Flakes around, goo inside, but not all the time. 

Energy levels. During my mid week flare up I suddenly felt wiped out. I think this was partly due to a drop in temperature as the air con was on full blast. 

Emoluments. For a long time I was putting on half a tub of 50/50 paraffin at a time. Now the tubs are lasting a lot longer because there are large parts of my body that don't need it and the bits that do, don't need as much as they did. 

Big old flakey face

This morning before my daily hospital treatment

Dermatologist update

Just seen the dermatologist for the first time in 6 weeks.   Generally all is good.  He is happy with the progress and the patches of good skin.  I told him I was happy that yesterday, after a long day at work and a 4 ½ hr train journey I had smelly feet.  I was happy about this because it suggested that my feet were sweating.  No part of my body has sweated since February.

So that was the good news.  There was bad news though.  The Neoral (Immunosuppressants) which seem to be making things better, can affect my kidney function.  For this reason I have to have bloods taken every 4 weeks.  The results show my kidney function is deteriorating.  Its not too bad at the moment but if it gets to a certain point I will have to stop taking the neural.   I’ll try not to worry too much about that for the moment. I’ll try. 

Triggers & Bullet points

A couple of things to mention. First, I have already written a post listing some of the things which i think may trigger my bad days (alcohol, showers & baths). I've noticed a few more;

• Stress
• Air conditioning 
• Sudden drops in temperature 

Obviously I could just be seeing patterns that aren't really there. Which means I may have given up alcohol under false pretences. 

Next thing to mention, just like Eskimos have 50 words for snow, I'm starting to build my own lexicon of shedding words;

• Shedding: I've been using this to describe skin coming off in visable but small (about 5 mm or less) flakes. 
• Dusting:  when it comes off as tiny spots of dust, less than 1mm
• Peeling: when it appears to be a sheet of skin that is coming off my body and breaks off in relative big flakes (1 cm or more) 

Maybe I should look at the Eskimo dictionary and see how their flakes compare to mine 

Brief update

A brief update this week as I've already posted a few updates during the week, but just to recap. Generally still improving but a few flakey days this week. 

Flakey day becomes flakey 2 days

20 mins of de-flakeing in the shower room at work before driving home then a service station stop to get the dyson out. 

Flakey day

Like I said in my last post things are improving all round. That doesn't mean I have stopped having flakey days. I do, and today has been one of them. Head, face,chest and arms. All flaking or peeling. All to be expected on the long road to recovery. Annoying rather than depressing. 

Good news update

Nothing but improvements to report this week.

• Skin shedding.  A lot less.  Yesterday was my first office day where I didn't need to go to the shower room for a shake down :-)
• Scalp. Improving. Especially first thing in the morning. not as scaly as I was.
• Eyes. not as mucusy or flaky
• Itchiness. minimal
• Skin colour. Big island of sparing across my belly , the inside of my arms, and my legs
• Temperature:  I can now definitely feel the temperature better than I did. I'm enjoying the warm sunny days now :-)

Scales

Yesterday I was fed up because I woke up with a scaly forehead and scalp which looked like this

But looking through my photos reminded me that just a week before I was waking up looking like this 

So it's definitely improving 

Logistics

One of the hardest things about having this desease is the logistics of treating it while maintaining full time job which requires me to be away from home for 3 days a week.  

First of all there is the appointments:

- daily hospital appointments where nurses apply appointments.  This is not a major problem as I can do this myself on the days I am out of town

- monthly (approximately) visits to the dermatologist as part of his ward round at the hospital

- GP visits every 4-6 weeks, there always seems some reason to need to go.

- I also have an appointment to see an eye specialist

Then there are the medications & treatments.  These currently include: 

- neoral.  imunosupresent

- Acitretin. retinoid

- HYdroxyzine. antihistamine  

- 50/50 paraffin emollient.  big tubs of the stuff to be applied a couple of times a day

- Emolin Spray.  Spray on alternative to the 50/50 gel which i can put on, on my work days.  

- Cetreben.  Emollient for my face

-  SCC ointment. horrable greasy cream to put on my scalp which lifts off the flakes

- Alternative scalp ointment.  not as discusting or powerful, but i can wear it on work days.

- eye drops for day

-eye gel for night

-emollient shower gel

its not just a case of seeing if I am running low on these treatments, i have to take into account time for ordering and getting the prescription from the doctors, taking it to the chemist, the chemist often has to order it in, which takes another working day and making sure this allows me time to get it before my net trip to newcastle.  

Then there are the daily shedding, brushing, vacuuming logistics and shaking out the bedding each morning  

BUT  Its not going to kill me and i will get better, so i'll quit my moaning now and watch a bit of telly.  After all, I still find time to write all these blog posts  

Update

• Skin shedding.  Fairly bad, getting worse towards the top half of my body, hot weather may be drying the skin and emollient?
• Scalp. Flakey, itchy horrible 
• hands. All good
• feet. Generally good although my nails are a bit yellow and require scraping out. (Sorry, I hope you're not eating)

• Eyes. Big mucusy mess, again I think the heat makes them worse
• Itchiness. Not too bad although it can get worse if I'm out in the heat
• Skin colour. Hmm, overall getting paler but day to day heat makes it darker
• Islands of sparing. Growing across stomach and sides. Good news :-)
• Weight loss. In the 4 1/2 months since this has started I have lost about a stone and a half (21 lbs). Impressive since I have been eating more and doing no exercise.  Definitely not a problem as I was, and still am overweight. 

Islands in the sun and topless selfies

We have had a heatwave recently and a few people have asked how has it effected my skin.  My head and face have been particularly flakey, which I think might be partly due to the emollient drying quickly.   Also the 'islands of sparing' seem to be harder to spot on a really hot day.  Speaking of which, when I can see them my islands (patches of healthy skin) generally seem to be growing, which is good. 

Ps it is not easy to take a selfie at this angle with a camera phone covered in emoluments and flakes

Pps I'm obviously fishing for google hits with the title of this post

PPPS, enjoy the moobs :-)

Smut

It can be difficult to talk about the process of removing of shredded skin and applying of Emoliant, without it sounding a bit smutty. Examples of things said by me or others;

- I need to cream up

- I have to shake myself off

- kevs gone to lube up 

- I stopped off at a service station to touch myself up 

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.