Light therapy - The results

I have been very bad at keeping a written update on my light therapy so now that I have had the last session I thought I would share the results.


Before I go into that I will give you some pros and cons of the light therapy from my perspective (everyone reacts differently).

Cons

• Gives you a constant tan - May not sound like a con but I have become paranoid that people think I am using sun beds... I point out constantly that its medical.

• Redness on days of treatment - Immediately after treatment I am fine but throughout the day you get redder and redder until you become a human glowstick. It doesn't hurt but does make you very hot.

• Goggle marks - to begin with I had to wear these little goggles which left my burning red face with ridiculous white goggle marks. It was getting ridiculous so as I don't really have Psoriasis on my face I opted to use sun block on my face for the last 10 sessions which helped alot

• Burnt nipples - true thing! how often do your nipples see the sun? so when they were exposed to this UV ray i did actually burn them so again I opted for sun cream on my face and nipples.

• Time - I have felt like the hospital is my second home. I have perfected the f*ck off look to the charity guy who sits in the foyer. There is only so many times they can approach you before you start thinking "seriously you still don't recognise me as you have harassed me twice a week for the last 4 months!

• Itching - Anyone who has psoriasis knows the phrase "it has to get worse to get better". There is a moment with all the psoriasis treatments where it starts to work a bit but when your skin starts to repair it can be the most incredible itchy sensation. Yes, it is short lived (sometimes a few days) but its hard to do normal things while you just want to cry and scratch off your skin.

Pro's

There is only one. See pictures below of my arm:

I think this picture says it all!

However, although my arms are better my torso is not quite clear.

Because of this they are moving me to 10 sessions on a different machine. It is PUVA treatment. Same kind of thing but I have to take a tablet 2 hours before treatment to make my skin more sensitive.
Biggest downside to this one is that on days I have treatment I must wear sunglasses all day and cover up any skin all day so if you see me indoors wearing sunglasses I am not hungover, it is medical lol!!!

For anyone suffering please please please give the light therapy a go. As you can see it is so worth it!

Light therapy update

Now that I have been having light treatment for a few weeks I thought I would give you guys a short update.

It has been an odd experience really. After the first couple of times I noticed that my face was becoming irritated and blotchy which is completely out of the ordinary as I don't suffer from psoriasis on my face.
I raised this with the nurse at my next appointment. She looked me over, looked a bit puzzled and then took a sharp intake of breath as she realised what was happening (I expected a little light bulb to appear above her head). "You're wearing make-up!" she said as if this was meant to mean something to me. Well it turns out that she had neglected to tell me I am not to wear any make-up, perfume or deodorant and also that I am not to wash my hair or body the day of my treatment due to the perfumes in the product and how it reacts in the machine. I'll be honest I didn't really ask why.

So from that session onward I now shower the night before and have to go to the hospital bare faced with no deodorant on... FYI if you ever see me at the hospital when I am in this state please don't try to talk to me, the pure humiliation of not wearing make-up renders me blind to other people... well except the man who was screaming at me this morning because I would not let him jump the car park queue (a story for another time).

Oh that reminds me I realised that my early morning appointments mean I miss the horrendous parking queues so yay I always get a space straight away.

So the treatment is going ok. I am about 6 sessions in (I have already lost count) and am starting to see some improvement already. This has amazed me considering my sessions started with 36 seconds in the machine and each time it goes up 20%. Today I was in there for 1 min 27 sec and this evening I actually do look sunburned.

The real downside is the itchiness. The nurse had warned me that it would get worse before it got better and she wasn't wrong. Even as I type this I want to just rip my own skin off but I will perservere as it will be worth it.

***Don't scroll down any further if you don't like seeing gross stuff.***
The pictures below are from session 1 to session 6. The change is subtle but trust me it is so much better already


Session 1

 Session 6

Accidental hobby

I have inadvertently taken up oil painting.
Yep, that is right, due to a slight misunderstanding at Christmas I acquired all the gear so I thought "why not"

A friend of mine moved into her new flat last year and showed me the most beautiful canvas paint by numbers that she was doing. I loved the idea of having art on the wall that you had done yourself.

So after a huge house renovation/ extension I have a lovely room that is crying out for some art of just this type. So for Christmas I asked my brother for my own paint by number canvas.

It is still unfinished but this is what I have done so far

On Christmas morning I was presented with an oil painting kit from my husband which confused the hell out of me. To which he replied that my brother had told him about the painting I had asked for and he completely got the wrong end of the paint brush and thought I had wanted to take up oil painting.

Having almost completed my stag picture I decided to give it a good go. Best case I discover a new talent or at least a hobby I enjoy and worst case I have just wasted a bit of paint.

I found an old easel laying around (seriously did) and even found a small canvass unused (why do I have this stuff laying around in my house?). I then found a picture online that I thought looked simple and loved the colours so went about painting.

The first thing I did was to paint the background however I did not know what I was doing so did not use any thinners and just piled the oil directly and thickly to the canvas. I had no idea this would take days to dry...

I then went about completing the tree. It is far from perfect and looks ok if you stand a distance away but I am really pleased with my first attempt

I have since been reading up and even got a book on oils, which is one of the more difficult paints to master apparently (typical to start at the highest level). I know all the things I did wrong and have a couple more pictures and techniques I want to try so watch this space.
The biggest problem is now finding time to do it

Photo therapy during austerity

If you read my last post you may well be wondering what on earth photo therapy (light treatment) is. Well let me explain.

Light therapy, also known as photo therapy, is the use of ultraviolet (UV) light for its healing effects. Photo therapy has been used worldwide for nearly a century to treat chronic skin conditions such as psoriasis, vitiligo and severe eczema.
While many treatments decrease the overall immune system, UV light can be used to decrease the local immune system in the skin. In conditions such as psoriasis, light therapy can also slow down the development of thick, scaly skin.

Yesterday I had my induction with the team at Frimley park hospital. After an HOUR trying to park I arrived slightly late for my appointment but was greeted by a lovely nurse who said not to worry.

This nurse then spent the next 45 minutes going through all the information about the therapy, what to expect, do's and don't's etc

There was a lot of information but my biggest take away was that one of the side affects is that there will be an alternation in the skin pigments... in simplified English I will get a tan!!! awesome :)

The light used is similar to those in sunbeds however the amount of UV you get from them is around 20% and in these sessions I will get closer to 80%. I was told I would be having 30 treatments and that most people see significant changes by session 15.
90% of patients respond really well to the treatment and are cured with only a small number returning at a later date.

The nurse then did a patch test where she put this wand of light on my back (a clear bit of skin) and left what I can only explain as a number of mini crop circles of varying redness. Apparently this shows them what level of power my skin will be able to take.

The treatment

Today I went back for my first treatment. I couldn't sleep last night, I was just so excited. This is something I have dreamt about and fought for over the last 6 years so it was a bit like Christmas day.

It only took 40 minutes to park this morning which is so frustrating when I am only going to be in treatment for a few minutes.

I went in and saw the lovely nurse again. She checked the patch test and seemed happy with the result. We discussed the various patches around my body and what standing position I should take in order to reach the most patches of psoriasis. We settles on a weird, legs apart and hold boobs up (I have a patch under my boob). I looked ridiculous.

I was then sent behind a curtain to undress - completely. I adorned my amazing mini goggles and climbed into the machine. The machine, by the way, looks just like an upright sunbed but there is a little window at head height (for the nurses to check on you), also the lights seemed red but this could be the colour tinting from my goggles.

I took my weirdly pre-agreed stance and shouted to the nurse that I was ready. The nurse came in and turned on the machine which got warm very quickly. I just kept thinking of all the other psoriasis riddled people who had stood here before me and shuddered at the thought (not to self, take sanitiser next time).

No sooner had it started than it stopped. 34 seconds!!! 34 bloody seconds, almost doesn't seem worth undressing for. I have been told the time will increase with each visit so probably another week and a half before I make it to 1 minute Lol!

I was then told to dress, sign the form and leave. I walked out of the room a bit rosey cheeked and dishevelled and wondered what the other people in the waiting room thought had just gone on... I always try to guess why people are there when in a medical waiting room, It is a rather morbid guessing game but it keeps me entertained.

My next session is on Monday and then again on Thursday for another 29 sessions. All I can think about though is how to avoid the traffic and parking misery for the next 15 weeks. May need to park miles away and walk in.

This is my arm after 1 session, I will keep a record of the changes over time.

More than just skin deep

I have been MIA from the blogging scene for a while now. This is mainly due to health reasons that have consumed my life lately.
For the first time in about two years I feel like I am winning my personal battle and wanted to start sharing again, so here goes.

The main thing I want to focus on today is my Psoriasis. For those not "in the know" this is a horrible skin condition that causes red, itchy and scaly skin (it is as disgusting as it sounds). Psoriasis affects around 2% of people in the UK. It can start at any age but most often develops in adults under 35 years old, and affects men and women equally. The severity of psoriasis varies greatly from person to person. For some it's just a minor irritation but, for others, it can majorly affect their quality of life. Unfortunately mine is the latter. I am now covered from my head to my toes in these awful looking patches of flakey, red soreness. 

How it began:
It all began in my scalp about 7 or 8 years ago and to be honest, at the time, I just put it down to a reaction to a specific shampoo. When, after changing shampoo, it continues to get worse I knew there was more to it. It looked like dandruff and I would have to avoid wearing black as white skin would drop to my shoulders and cause me embarrassment (still does now).

It stayed just in my scalp for a couple of years until one day (a month after having a giant back tattoo) a patch appeared on the bottom of my back. This very quickly got bigger in size almost overnight and ruined my brand new tattoo that is still not complete yet. From here it spread over my entire body within a few short months. 

How does it feel:
Itchy - 
For the most part I am itchy ALL THE TIME which puts me on edge a lot. I find myself loosing my temper so much quicker that before as I have no tolerance. The evenings are by far the worst as it reaches the kind of itchiness that simply becomes more itchy the more you scratch. I have spent many an evening crying in the bath and eventually going to bed early just so that sleep will put me out of my misery. 
Some of my patches are in places that you cannot be seen to be scratching in public (if you know what I mean) so can be very awkward.

Soreness - 
With the itching comes the soreness and bleeding. To scratch to the point you find blood on your hands is awful as you are literally scratching your skin away and still cannot ease the itchiness. Also I have patches around my trouser waist band so where possible I try to wear leggings as jeans tend to aggravate and rub it. Also around my bra line is so painful so as soon as I get home the bra comes off!

Embarrassing - 
Aside from the physical pain the emotional impact is huge. I no longer have the confidence to go swimming, put on a dress or do anything that will involve me having to come into skin to skin contact with someone. I am always thinking that people are disgusted when they look at me. Like I am the type of person that would put them off their food.
Holidays are the worst - the thought of going to a hot country where I have to wear swimwear and shorts/ tshirts etc fills me with a huge amount of dread.
I usually try to head off the embarrassment by talking about my condition up front. I would just rather people didn't talk behind my back about what I must have so I over compensate and bore the crap out of people with the history of my psoriasis... much like I'm doing here LOL

Even at home I am loathed to let even my husband see my skin. He tells me that he doesn't see it and that he loves me so much it simply doesn't bother him but I just can't help thinking "this isn't what he signed up for", I wasn't this vile when we married etc.

Anyway so as you can see its been a horrible time. To top this off about 5 years ago I began suffering from a condition called psoriatic arthritis. It is basically an arthritis condition that stems from the skin condition. This is mainly located in my feet and when it first started I actually couldn't walk. I need a walking stick to help me get around. I am now on great tablets that have got me back to "almost" normal again ie I can walk but if I walk to far or stand for too long I am in excruciating pain. which means my weight has taken a bit of an uplift as I struggle to find an exercise I can manage.
I digress as this is not the focus today but if you didn't feel sorry for me yet I'm hoping that may have swung it.

Treatment - 
Oh the road of treatment was long and frustrating. Every visit to the doctor would see me come out with yet another ointment, cream, topical treatment that just doesn't work. Well they usually worked for about a week or two and then my skin would end up worse than when I started as it flares up.
I tried plenty of herbal options and even tried dietary things like cutting out dairy - all of which failed.

The thing that would drive me crazy the most is that people are constantly offering up things you should try as it "worked for my friend" (god I have heard that phrase so many times). I know people are trying to help but unfortunately everyone is different and at this point I have tried EVERYTHING.

The thing I wanted more than anything else was light treatment as this is a much more powerful way of tackling it. Every time I went to the doctors and asked I was told that my skin was not bad enough for a referral!!!!

So last year when I was doing everything I could to not rip my own skin off I snapped, marched down to the doctors and demanded they refer me to a dermatologist and I was not leaving until I got my referral. IT WORKED!

I only had to wait 2 months for the dermatologist appointment. She tried to fob me off with more creams until i stopped her mid sentence and explained I was only interested in light therapy and she WAS going to refer me. This was back in November 2018 and today (February 2019) I had my first light therapy treatment.

It may work, it may not but after years of fighting with my GP I have finally got here.

See next blog for details on the light therapy.
See photo below of my arm on day 1 of therapy, I will be keeping a track of these patches over the 30 treatments I am due to have