Why Today Had To Be Different

Good Day Everyone,

It sure has been a while since I sat down to write a blog post. The past few weeks have been incredibly tough, primarily on the health front, although the house renovation has been another source of stress, and therefore a contributory factor to the aforementioned. I'll do a separate blog post updating you on the house soon as a lot has happened, and not always in a good way!

Coming back to the health issues, I've been firing or rather flaring, from all cylinders. I've been experiencing more migraine attacks than usual, and my body and scalp psoriasis has been going crazy. On top of this, my arthritis has flared up quite badly and I've been struggling with severe shoulder pain, as well as intense fatigue and exhaustion, despite doing very little physically. Things got really bad a couple of weeks ago and after several days of wallowing in teary self pity of "Why? Why is this happening to me?" I realised that I actually knew the answer to why, but more importantly, I took the mental step of acknowledging that no-one could put this right other than me (even though I already knew this too). You see, the thing with chronic illnesses is that you are battling those illnesses every single day, in fact it's every single minute of every single hour of every single day. The battle is continuous - there are no breaks, and it is absolutely relentless! With hindsight and some reflection (after all what else was I going to do when I'm in bed day after day), I can now see that I simply got tired of battling. I had no more fight left in me. I had surrendered, not only to the disease demons, but also to the temptations around me, which I fight on a daily basis.

So with the realisation and acknowledgement that I, and only I, had the power to change things, I...  started to change things ;o). Initially, the changes were all in my head as my body physically wasn't well enough to do anything, but over the last few days, I have started to turn those mental changes into physical action. They started of small, like me taking over juicing duties from hubby or being well enough to accompany him on a supermarket shop, but hey a step in the right direction is a step in the right direction, no matter how small, and slowly I'm moving on to bigger achievements.

Having been stuck in a bit of a negativity rut towards the end of this year, I didn't want to start 2016 on a negative note, no matter how bad my health maybe. And this is why I woke up today after a relatively decent night's sleep with a view that today had to be different. It just had to. I didn't want today, the last day of 2015, to be like the past few weeks. The same mundane routine. There had to be something new and there had to be some sense of achievement, no matter how small.

So the first thing I did was to check the weather forecast as it has been raining almost every single day this month and seeing that rain wasn't forecasted for a couple of hours, I suggested a sea front walk to hubby. We used to do these walks most mornings in Japan and found them to be very therapeutic mentally, as well as physically. Despite living next to the sea we haven't actually done many sea walks as hubby starts to work on the house as soon as he is up in the mornings. There was something very inspiring and awakening about today's walk- I started to feel like a weight was being lifted off my shoulders as I took in the crisp morning air and marveled at nature's beauty. The walk turned into a little breakfast stop off, and hubby and I used this rare quality time (we've had a great quantity of time together these past few months but it hasn't been of good quality) to reflect upon 2015, and discuss what we would both like to get out of 2016. Walking back we did get caught in the rain but it was worth it.

Once back home I took my first ever bath in our new bath tub to help my sore joints and whilst it only made them feel a little better and only for a short period of time, I think bath soaks will start to help the more often I do them. After my soak I made our daily juice and then set to work on doing some cooking. We very recently got to a stage where we have a fully functioning kitchen and yesterday hubby got our dining table and chairs out. This has made such a huge difference to the quality of our lives. So even though I was feeling quite tired physically, I decided to push ahead using my mental energy which was buzzing after the walk and bath, to be productive in the kitchen. I made fish pie, for the first time ever. I even made my own butter and parsley sauce, and it tasted great (even if I do say so myself ;o)). I made a batch of them so some can go in the freezer, and I'll be taking a few to my mum's this weekend as she's recovering from knee surgery (cue good daughter points lol).

I did a few more things that I won't bore you with but suffice to say, as I sit here typing this at 10.30pm on new year's eve, that today has been different to all the other days I've had lately. I have felt positive and got a real sense of achievement with today. Even though tonight is a quiet night for us, I feel excited, inspired and ready for 2016 to be a year of positive change for hubby and I. And on that note I shall leave you. All that remains for me to say is, thank you from the bottom of my heart for reading this and all the support you have given me, and I hope 2016 is a fabulous year for you and your loved ones :o).

Happy New Year Everyone! 

Love Sheen xxx

Living With Psoriatic Arthritis (PsA): Initial Symptoms & Diagnosis

Good Day Eveyone,

A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your psoriatic arthritis medication and/or treatment without discussing it with your doctor first.  This is simply my personal experience of living with psoriatic arthritis.

This post has been a long time coming. I have written and then re-written this post several times, never quite being happy with it. My PsA is such a big part of my life and affects my life on a daily basis in ways that many people probably don’t realise / appreciate and as a result I have so much to say on the topic that I was struggling to condense my thoughts. I did even consider abandoning the whole idea of discussing life with PsA, but I know at least one of my regular readers also suffers from arthritis, and I know she finds such post interesting (as do I) and so I decided to persevere. I have decided to break it down into bite size chunks in a chronological order so that I can take you on my journey, as it happened. So let’s start from the beginning, shall we?

Before I jump into my journey I just thought I'd share what PsA is (via wikipedia):

Psoriatic arthritis is a type of inflammatory arthritis (joint disorder) that develops in up to 30% of people who suffer from the skin condition psoriasis. Symptoms include swelling, pain, and stiffness in the joints, sausage like swelling in fingers / toes. In addition to the pain and swelling, there is extreme exhaustion that does not go away with adequate rest. There is no cure for the disease and whilst it can be mild, it can also progress to more destructive joint disease. The exact cause of the disease is unknown.

I vaguely remember my sister in law asking me why I was limping during the Christmas holidays in 2009. I told her that I had a bit of hip pain and had probably slept funny. And that was it – dismissed! I never gave that pain a second thought.

End of January 2010, I started a new job and a couple of weeks into the job, I remember colleagues commenting that I was limping and hobbling. Again I mentioned that I had a bit of hip pain thinking that I’d probably just trapped a nerve. I was given the nickname Grandma at work as I struggled with the stairs to our first floor office ;o)

I don’t have any specific memories of the next few months with regards to the hip pain but I do recall that I went to see my GP (doctor) several times complaining that the pain was getting worse. I was prescribed various anti-inflammatory drugs, none of which did much good! My apartment was on the first floor (there was no lift in the building) and I recall being in a lot of pain every morning and evening when I would go down and back up the stairs.

The next significant memory I have is of May 2010. I had to fly to several cities in the US for work meetings. The 7hr flight to New York wasn’t a problem as I had traveled business class and spent most of the time lying down. However, I then had to wait several hours at the airport before boarding a transfer flight to another city and with this being a short haul flight (3-4hrs) I was in economy. Sitting around the airport for hours had managed to trigger a severe case of hip pain. I tried walking around (which was difficult with a heavy laptop bag) but that didn’t seem to help. The pain was getting worse and being so far away from home and anyone I knew was making me really anxious. Then came the worst pain I have ever experienced relating to my arthritis. During the short haul flight the pain in my hip became agonising. Not only that but it also seem to have spread to my other hip. It hurt to be sitting down. I was so desperate to stand up just so that I could take the weight off my hip joints. 

Unfortunately, as the flight was going through a storm there was no way I could stand. I felt like screaming and became increasingly stressed out by the pain and not knowing what I was going to do. Tears started streaming down my face, such was the severity of the pain. I remember pulling my blanket up to my neck and kind of burying my face into it so that the guy sat next to would think that I was just sleepy and not see me crying. I slouched down, as low as I could,  into my seat and crossed one leg over the other and tilted onto the hip of my bottom leg so that I could take the weight of the other hip for a bit of relief from the pain. A few minutes was all I could manage before the pain became unbearable and I swapped my crossed legs to give the pain stricken hip a break for a few minutes. That’s how I spent the next few hours, crossing one leg over the other with my face buried in the blanket trying to sob as quietly as I could. Getting of that plane was the most relief I’d ever felt. It was a-mazing to be able to stand up. It was there and then I decided that as soon as I got back home I was going straight to see a specialist doctor and not my GP, who I felt was not taking my pain seriously. 

Once back home I made an appointment with a rheumatologist. On the day of the appointment I woke up to find that two of my fingers had swollen severely. They looked like sausages and were incredibly stiff and painful. I remember showing them to a few colleagues at work that morning and that’s when I realised what I had. Arthritis! Sausage fingers being a classic sign / symptom.

At the hospital that afternoon the rheumatologist listened to my complaints, he watched the way I walked to check my hobbling / limping, he watched me climb up and down a couple of stairs and watched me rise from a seated position (I’d started to have difficulty rising from my chair at work or the sofa / bed at home). He also took a very detailed medical history, examined my sausage fingers, and upon me mentioning my psoriasis history, he immediately made the link and told me that he thought I had Psoriatic Arthritis (I’m surprised my GP hadn’t made this link). He did blood tests to rule out Rheumatoid Arthritis (RA) and prescribed me some steroids (Prednisolone) to treat the inflammation, whilst we waited for the blood results. 

After just 3 days on the steroids I was literally running up and down the stairs again. My fingers were still stiff but looked a little less swollen. I carried on with the steroids for 2-3 weeks but then started to suffer from really bad insomnia as a side effect from the steroids. At my follow up appointment with the rheumatologist he confirmed that I had tested negative for the rheumatoid factor (so it wasn’t RA that I had) and confirmed that in all likelihood I had PsA (psoriatic arthritis). 

Finally, after 6 months I actually had a name and cause for my pain. We discussed how I was getting on with the steroids and the severe insomnia that I had developed since starting them. So my steroid dose was reduced and I was also prescribed a drug called Arcoxia (etoricoxib) to treat my pain and inflammation.

Unfortunately the medication that I was on was simply treating my symptoms of pain and inflammation, but it wasn’t stopping the disease from spreading to other joints. The months following my diagnosis saw the arthritis spread to the top half of my spine, a knee, and a shoulder joint, plus I’d developed psoriatic nails on my hands (discussed here). I saw the rheumatologist several times over the coming months and we discussed other treatment options such as steroid injections in the hip joint (which was a particularly painful joint for me), and starting me on a DMARD (disease modifying anti-rheumatic drug). DMARDs are a class of drugs which slow down the progression of the disease. Given that there is no cure for PsA, the next best thing is to try and control / slow down the progression of the disease and as a result most patients with PsA do end up on one or more DMARDs.

However, we never progressed onto one of these options as ten months after my diagnosis my hubby was offered a job opportunity in Singapore which we took.  Since moving to Singapore my arthritis has had periods where it’s been quite stable :o) and times when it has really flared up :o(. It has also continued to spread to new joints. Today, I have arthritis in several large and many smaller joints e.g. both shoulder joints and collar bones, top half of my spine, both hip joints, one knee, toes in both feet, one wrist and five fingers… that’s a lot of joints. 

Medication wise, I am just on Arcoxia now, albeit at a higher dose and I no longer take the steroids (I'll cover why in a separate post). In 2012 I did go on to a DMARD called sulfasalazine but had a terrible experience with the side effects and came of it after a few weeks (I'll cover this in more detail in a separate post).

Like most illnesses / diseases PsA is a complicated condition and there is so much more that I could talk about from my experience of the drugs I’ve tried, to how it affects me physically, emotionally, to the practical impact it has had on my day to day life and on my relationships with people, and my experience with doctors. All of this is way too much to cover in one blog post and so I will continue with my experience in another post.

Do you or anybody you know suffer from arthritis or PsA? I’d really like to hear from fellow sufferers as I personally don’t know anyone who has PsA or even another type of arthritis who is similar in age to me.

Love Sheen xxx

Living With Scalp Psoriasis

Good Day Everyone,

A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your scalp psoriasis treatment without discussing it with your doctor first. Whilst I will be mentioning the treatments that I have tried, I am not recommending that you try them too. This is simply my personal experience of living with scalp psoriasis.

Today I wanted to follow up from my post about Living With (Body) Psoriasis and talk about my experience of living and dealing with scalp psoriasis. I have suffered from body psoriasis since the age of 17 and thankfully, even at its worst, it was never as bad as it could have been (although it felt really bad at the time) and I feel I got off pretty lightly compared to many people that suffer from this condition. However, scalp psoriasis was the complete opposite and I suffered extremely badly with this condition. I developed scalp psoriasis in my early 20s and it truly was the bane of my life! It totally ruled and dictated my life for way too many years and not in a good way!

Scalp psoriasis is the skin condition psoriasis but on your scalp (obviously). Psoriasis is an inflammatory skin condition in which the affected skin cells turnover at an abnormally high rate, resulting in the build up of skin plaques or scales which become very dry, itchy and crusty. Eventually these scales will peel / flake off, leaving behind very thin, red, sore layers of new skin the can easily break and bleed. It can be a very uncomfortable, even painful condition, which often leaves the sufferer feeling incredibly embarrassed and self conscious thus affecting sufferers emotionally, socially and psychologically, as well as physically.

For me, having this skin condition on my body was bad, but bearable as I could hide it with clothes, but when it spread to my scalp, it was so much worse because I have very dark brown / black hair. This means I constantly looked like I had severe dandruff. Every time I washed my hair, the scales of skin would soften and when I brushed my hair, the scales would start to peel and get caught in my long hair. I hardly ever went out after work as my evenings consisted of applying various smelly coal tar ointments and shampoos, leaving them on for a couple of hours, then washing them out. I would then spend the best part of an hour drying my hair and then picking each individual flake of skin out of my hair that had become loose. If there were any thick psoriasis patches on my scalp that felt like they were going to peel very soon, I would peel them using my nails (I know very gross!) just so that I could eliminate the possibility of them coming away from my scalp and sitting loosely in my hair whilst I was at work or out and about. By the time I finished, there would be so much skin on the floor that it looked like somebody had emptied a snow globe! I kid you not! But this was the price I was willing to pay to hide this embarrassing condition from as many people as I could. For years I never went on girly holidays or stayed over at a friend’s house because I didn't want them to find out about my scalp psoriasis.

Having scalp psoriasis was incredibly stressful because I found it much more difficult to conceal than my body psoriasis and it was much more time consuming to manage. Stress is known to make it worse and the worse it got the more stress it caused me - it became a vicious circle! . I felt incredibly embarrassed by the condition because I feared that if people could see flecks of skin in my hair they would think that I had dandruff, worst still, someone would realise that I have psoriasis. Whilst it’s not a contagious condition, not everybody knows that. I think I was also scared that people would think that my hair and scalp were not clean and that’s why I have this affliction. To avoid this embarrassment and humiliation I devoted most of my evenings to ‘clearing’ my scalp and hair of any signs of flaky skin. I also didn't get my hair cut for many years as I avoided going to the hairdressers (again due to embarrassment), although I have to say having short hair definitely makes it easier to deal with this affliction. This avoiding the hairdresser thing meant that the process of clearing my scalp took a long time as I’d have to peel flakes of skin from my scalp and pull it through the length of my hair. Sometimes the flakes of skin would be as large as say the size of a pea or even a cherry!

At its worst approximately 85% of my scalp was covered in psoriasis. It also spread from my scalp to behind my ears and the edges of my hair line (luckily it never spread to my forehead or face). This was the main reason why I never liked to tie my hair up but wearing my hair loose meant I had to spend ages clearing it of any sign of this damn disease – it felt like a no win situation.  When the majority of my scalp was covered in psoriasis I would have this constant tight sensation, like a ball made completely of elastic bands, all around my head. It was incredibly uncomfortable. There were times when I felt complete and utter despair but yet I never talked to anyone, not even my doctor, about how this condition was ruling my life. That is one of my biggest regrets :o(

By the time I developed scalp psoriasis I was no longer under the care of a dermatologist (skin specialist) but was instead seeing my GP (family doctor) for repeat prescriptions of various skin ointments as my body psoriasis had improved following light therapy. So it was my GP who prescribed various treatments for my scalp psoriasis. These mainly consisted of smelly shampoos / ointments. However, none of them seemed to work. I went back and forth to my GP a few times, but because I was so embarrassed by it all, I never took active control of my treatment (another one of my regrets). Also, I felt like my GP never really cared about my condition because he didn't ever ask me how it was affecting me, my life or making me feel and he didn't refer me to a specialist, he would just simply refer to his MIMS (medical drug list) and churn out another prescription. In hindsight, I wish I had pushed for a referral to the dermatologist, instead of going back and forth to the GP trying various ointments. It got to the stage where I was so disheartened that I just started to get a repeat prescription for whatever treatment the GP had prescribed and didn't even bother going to see the GP when I felt it wasn't working. I guess I had kind of accepted defeat and come to the realisation that I was stuck with this condition for the rest of my life! What also didn't help was the fact that I moved towns every few years (due to work) and didn't really build much of a rapport with any of my GPs.

I tried sooo many different treatments both prescription and non-prescription to treat my scalp psoriasis. Treatments I tried included, Neutrogena T/Gel Therapeutic Shampoo, Alphosyl shampoo, Elocon scalp lotion, Bettamousse, Diprosalic scalp application, various coal tar preparations and shampoos (these smell so bad), Dovonex... and the list continues. I've spent many nights sleeping with a towel on my pillow wearing a shower cap, hoping that this particular treatment will work, devoting all my time outside of work to trying to calm this disease down to a more manageable form. I even tried dandruff shampoos like Nizoral, even though it wasn't dandruff that I was suffering from, but I used them in the hope that they would relieve the itchiness. 

I've read lots of literature about how fish oils are thought to help with psoriasis, as well as eating a healthy diet, exercise and managing stress levels. For me, I've never been a big fish eater but I did start to take fish oil capsules. My diet has always been reasonably healthy being a lover of fruit and vegetables and not naturally having a sweet tooth. There are lots of theories about certain foods aggravating psoriasis and other foods which seem to be more beneficial and I will touch upon this in a future post that I plan to do. The part where I guess I struggled the most was managing my stress levels. When I look back at the times when my scalp psoriasis was at its worst these times typically correlated to stressful times in my life be it due to relationships, work, money worries, big life changes etc and I never used to be particularly good at managing my stress levels. The fact that I had a career which had me working long hours with lots of travel where I would often end up skipping meals and not getting time to relax and chill out didn't help either.

The turning point for me, came partly when I met my hubby and partly with age. With age came confidence and with confidence came inner strength that enabled me to take more control of my life and address the things that caused me stress. I changed jobs, I walked away from people and relationships that were doing me more harm than good. I also found ways to relax. I started to go for regular hot stone and Indian head massages that not only helped with my migraines but helped me to de-stress.  I started going for walks which I find mentally very calming and started replacing TV programmes with listening to relaxing music. I invested my time in relationships and friendships that I felt were more sincere and true, rather than trying to get along with everyone.

When my hubby and I first met, I never used to let him touch my hair (or come anywhere near it for that matter). I hid my affliction for as long as possible. When I did eventually tell him about my (scalp) psoriasis he was incredibly supportive and reassuring about it. Being in a positive, loving relationship did wonders for me. I finally felt like I had a best friend that was with me always, someone I could talk to about anything anytime. You see I’d never had that kind of closeness before. I've never been hugely close to my parents (as much as I love and respect them, I would rarely discuss my feelings with them), being the only girl, I never had that sisterly bond and I wasn't close to my brothers. Being with my hubby gave me immense peace of mind which in turn made a hugely positive difference to my stress levels and the way I dealt with stress. He was a much needed calming influence in my life.

The other thing that changed more recently (I’m talking the last 2-3yrs) was that I finally found a treatment regimen that seemed to work for my scalp psoriasis. Today, I still have scalp psoriasis, but only in about 10% of my scalp and it’s not particularly thick / built up - that I can live with!!! The treatment regimen that worked for me was using something called Cocois ointment which I apply to the affected areas of my scalp, leave it on for an hour or two and then wash it out using the medicated shampoo, Ceanel (followed by my regular shampoo and conditioner). Last year, once I’d given up work, I applied this treatment religiously almost every single day for about 5 months and it did wonders to calm and clear up a lot of my scalp psoriasis. Now I've got to the stage where I only need to apply 3-4 times a week. In Singapore I can buy the Cocois ointment without a prescription (in England it's a prescription treatment) but I've never been able to find the Ceanel shampoo so I always stock up when I go back home where I can buy it from Boots pharmacy without a prescription. I've never actually tried to wash out the Cocois ointment with just regular shampoo and if I'm honest I couldn't tell you whether it's the Cocois ointment that's working or the Ceanel shampoo or whether it's the combination of the two. I've always used the two together and that combination works for me.

In addition to the above combination, almost every Sunday I massage pure coconut oil onto my scalp and hair and leave it a for a few hours before washing it out. A lot of psoriasis treatments contain some form of coconut compound as it shown to help plus it’s a great natural treatment for your scalp and hair generally as it relieves itchy and flakiness. It’s also very nourishing for the hair and leaves mine very silky, shiny and smooth. I've also been going to the same hairdresser for the last ten years or so who knows that I suffer from scalp psoriasis and is incredibly reassuring about it so I never feel embarrassed. If a hairdresser makes you feel uncomfortable or embarrassed about your scalp psoriasis then take your money and spend it elsewhere.  Call up a hairdresser and explain over the phone about your scalp psoriasis and if they are reassuring about it then go for it but if they don’t even know what it is then I’d recommend staying clear of them.

Whilst things are the best they've ever been on the scalp psoriasis side of things, I’m pretty convinced that this improvement isn't just down to finding the right treatment regime for me but also other aspects of my life. It maybe that previous treatments didn't work for me because I had so many other factors that were aggravating my scalp psoriasis, like working crazy hours, not getting enough rest, being stressed and always worrying about things. Perhaps those treatments never had a chance until all the other factors calmed down. Nowadays, if I get stressed my scalp psoriasis (more so than my body psoriasis) does start to spread and flare up again as I find new patches forming. When this happens I make a more concerted effort to manage my stress levels, eat and drink more healthily and follow the above treatment regimen more strictly and regularly.

If you suffer from scalp (or body) psoriasis then my advice to you would be not to suffer in silence like I did for I would never want anyone to feel that kind of complete and utter despair. Make sure you seek medical advice. Go and see your GP / specialists and talk to them about how it’s affecting your life and making you feel. If your treatment isn't working then go back to see your doctor again and again, as many times as you need to. As well as the medical side of things, try to evaluate and pinpoint what aspects of your life might be contributing to your psoriasis. Managing stress levels was a huge thing for me and stress is known to make psoriasis worse. Look at your diet, do you need to take fish oil supplements which are known to help, do you get enough sleep and time to rest and chill out. Do you have someone to talk to? Bottling things up will only cause you stress. Believe it or not, you can be stressed without actually realising you are stressed – I can’t remember which doctor told me this but he/she said that you may think you’re not stressed and that you have nothing to worry but you could actually be ‘subconsciously’ stressed where your mind is refusing to let you acknowledge or admit to yourself that there is in fact something worrying you because you will then have to deal with it. It’s sort of like mental denial.

Below are some links to websites and organisations that you could turn to for support and advice and you know that you are more than welcome to drop me an email if you just need to talk to somebody who understands what it’s like to live with this affliction. Whatever you do, please don’t suffer in silence because I’m sure there’s something out there that can help you in some way, even when you think nothing is ever going to work.

Love Sheen xxx

Online community of psoriasis sufferers:

http://www.inspire.com/groups/talk-psoriasis

http://www.psoriasispatients.com/home.php

In the UK, channel 4’s Embarrassing Illnesses series feature scalp psoriasis:

http://www.channel4embarrassingillnesses.com/conditions/scalp-psoriasis/

UK: https://www.psoriasis-association.org.uk/

UK: http://www.psoriasis-help.org.uk/

US: http://www.psoriasis.org/in-your-area

Singapore: http://www.psoriasis.org.sg/

Living With Body Psoriasis

Good Day Everyone,

A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your psoriasis treatment without discussing it with your doctor first. Whilst I will be talking about the treatments that I have tried, I am not recommending that you try them too. This is simply my personal experience of living with body psoriasis.

Apologies that I've been absent for the past week and missed a few blog posts. I typically try to post three times a week but lately Arthur (aka arthritis) has been getting the better of me. I’m right handed and the arthritis in my right wrist has flared up quite badly making it very difficult for me to type. So I’m now typing with my left hand, albeit very slowly, but I figured the more I type with my left hand the faster I’ll get with the practice :o)

Today’s post is about my experience of living with the skin condition psoriasis. I’m going to focus on body psoriasis in this post and cover scalp psoriasis in a separate post partly because I think this post would become very long if I covered both here, but primarily because my experience with body psoriasis has been different to that with scalp psoriasis.

Psoriasis is a skin condition which consists of raised, flaky, silvery scales of skin. These raised patches of very dry skin are as a result of an increased turnover of skin cells. In people without psoriasis normal skin cells shed and regenerate every 30 or so days but in psoriasis suffers, skin cells turnover every three days, so around 10 times faster than normal. This means that layers of skin build up creating plaques or raised patches of very thick, dry skin that can also be itchy. Eventually this thick layer of skin will peel off leaving behind very sore, tender, fresh layer of skin which is very red and thin. If you scratch this thin layer of skin it will inevitably break, bleed and it can even get infected.

Psoriasis is a chronic (long term), non-contagious condition for which there is no cure but the condition can go in to remission, stablise and flare up again. No one really knows what causes psoriasis. There are various theories involving abnormalities with the immune system which causes inflammation in the skin causing skin cells to turn over at a very fast rate. There are also theories suggesting genetic involvement. You are more likely to develop psoriasis if someone in your family has it. In my family, my aunt had it as a teenager but grew out of it (she’s now in her 40s and psoriasis free). Two of my female cousins also have it. It seems to run in my dad’s side of the family rather than my mums. Funnily enough none of the men in my dad’s family suffer from psoriasis, just the women.

When I was 17 I noticed a dry patch of skin on one of my elbows and within a few weeks this one dry patch had progressed to psoriasis patches the size of golf balls on both my elbows. I recall my mum taking me to see our GP (family doctor) who prescribed a topical ointment / cream (I don’t remember the name) but a few weeks later I had developed huge psoriasis patches, almost the size of tennis balls, on both my knees and the ointment / cream that I had been using hadn't had any real effect. The skin was so tight and dry on my knees that it became very  painful for me to bend my knees as the dry skin patches lacked the normal elasticity the skin over the knees has, resulting in the psoriasis patches cracking and bleeding.

Our GP realised that topical creams and ointments were not going to be strong enough given how quickly my psoriasis was spreading and so he referred me to a dermatologist (skin specialist). By the time I went to see the dermatologist the psoriasis patches from my knees had spread further down my legs. I’d also developed a few smaller patches on my back. I couldn't believe how in a matter of just a few months I’d gone from having normal skin to this scaly, itchy, painful and ugly skin condition.

The dermatologist initiated me on a phototherapy course. This involved a trip to the hospital three times a week, before college, to have light therapy on my body. I would have to stand in what can only be described as a vertical sun bed, with protective gear for my eyes, whilst my body was exposed to ultraviolet light. Whilst having light therapy I was also using topical ointments / creams as well.

Luckily for me the light therapy made a significant difference in slowing my skin turnover rate and greatly reduced my psoriasis patches. After the light therapy course I continued using various ointments and creams. Over the years I have used Dovonex, which contains a vitamin D derivative, to normalise and slow down the rate of skin cell turnover, Elocon, which contains a corticosteroid that reduces skin inflammation, as well as various coal tar treatments. I’m sure there were other treatments that I cannot remember the names of.

By the time I entered my 20s my psoriasis patches had cleared on my legs. The only reminder I have is some slight skin discolouration but it really isn't all that noticeable. The patches on my elbows took a few more years to ease. In my 20s I started using an ointment called Diprosalic which worked wonders. It contains two active ingredients, betamethasone a topical corticosteroid which reduces the skin inflammation and salicylic acid which breaks down the excessive keratin (a protein that forms part of the skin structure) to help reduce the thickness of the skin scales, thus allowing the betamethasone to penetrate through the skin and be effective.

Now as well as drug and light treatment, I was also told by my Dermatologist back when I was a teenager that a diet rich in fresh fruits and vegetables, low in processed and sugary foods would also help with my skin condition. I was also recommended to eat fresh oily fish such as salmon and mackerel two-three times a week. As a teenager I did used to eat oily fish (my mum made sure I did!) but as I've gotten older I have started to find it more and more difficult to eat oily fish and have resorted to taking fish oil capsules instead. I don’t like seafood and do not eat any form of shell fish, I do however, on occasion eat white fish such as seabass or dover sole and I can eat fresh tuna but I really struggle with salmon and other forms of oily fish – I struggle even though I know it’s good for me.

Back when I was a teenager, I didn't take much interest in finding out about my psoriasis but as I got older and my scalp psoriasis got worse I did to turn to the internet for information. That’s when I came across psoriatic arthritis and realised that as a psoriasis sufferer, I was more likely to develop arthritis, which is also an inflammatory immune system condition, just like psoriasis. I've always had a niggle at the back of my mind that I would develop arthritis, I don’t know why I thought that, just a gut feeling I guess but what I didn't expect was to develop it at such a young age (31). I always thought (or hoped) that I would get when I was in my fifties and beyond as that way I’d have had children, worked on my career, travelled and basically done the things that one hopes of doing. However, such is life and you just have to deal with the cards you’re dealt and that’s what I’m (trying) to do :o)

I've always felt quite lucky with regards to my body psoriasis (scalp psoriasis is a whole other story and I was not so lucky!) as for the most part, it has always been on parts of my body that are easy to hide with clothing. I have cousins who have had psoriasis all over their hands, forearms, neck and even parts of their face. Now that must take a huge toll emotionally, as well as physically. For me, other than the physical discomfort of body psoriasis and not being able, or rather willing, to wear short sleeves in the summer I feel I have gotten off quite lightly, relatively speaking.

I think it would be fair to say that for the past five years at least, my body psoriasis has been in remission and stable. Whenever I discover the early signs of a new psoriasis patch forming I treat it with the Diprosalic ointment and so long as I apply it regularly I find that within a week or two the new patch psoriasis patch has disappeared.

I can appreciate that many other psoriasis sufferers many not have gotten off as lightly as I have. I have seen YouTube videos of people talking about how their psoriasis affects their lives and I can hear and sense the same despair that I once felt with my scalp psoriasis. My heart really goes out to other fellow sufferers because psoriasis is not a pretty condition to look at and we live in such a 'looks' orientated society plus you can't always 'hide' (and nor should you have to) your psoriasis if its on your face or hands. Luckily there are numerous different types of medications now available so if something doesn't work for you then usually there are other options to try. In addition, I also believe that taking a 'holistic' approach to health is the way to go where we don't just turn to drugs for answers and solutions but also look at food, drink, mental and emotional health as well as physical. I know first hand the beneficial effects a change in diet can have from my arthritis experience. Like arthritis, psoriasis is also an inflammatory condition and eating lots of anti-inflammatory foods whilst reducing / eliminating inflammation causing foods from your diet could have a beneficial effect but we must be realistic in our expectations from dietary changes. Its going to take more than a few months of eating the right healthy foods to undo decades of eating the not so healthy, wrong foods.

Stress is known to trigger flares and aggravate psoriasis and I believe it is really important to minimise the stress in one's life. Now I know that's not always easy to do but at the very least please make sure that you have someone that can provide some emotional support for the days when you are struggling or feeling fed up - it can make a huge difference, trust me I know. There are lots of support organisations and groups where you can talk to and interact with fellow sufferers and I've listed a few below. If you are struggling then please do not struggle in silence, do talk to your doctor or family member or friend or reach out for support from one the groups below. You can even reach out to me :o)

Love Sheen xxx

Online community of psoriasis sufferers:

http://www.inspire.com/groups/talk-psoriasis/about/

http://www.psoriasispatients.com/home.php

UK: https://www.psoriasis-association.org.uk/

UK: http://www.psoriasis-help.org.uk/

US: http://www.psoriasis.org/in-your-area

Singapore: http://www.psoriasis.org.sg/

Living With...

Good Day Everyone,

After my mini-series of ‘DIY Wedding’, I've decided to write about another mini-series based upon my personal experience. This one is going to be called ‘Living With...’ and in each post I’m going to write about my experience of living with the three chronic health conditions that I suffer from;

1. Migraines
2. Psoriasis (scalp and body)
3. Psoriatic Arthritis (including psoriatic nails)

I appreciate that this may not be of interest or relevant to all of you but I think that could be said for any post (and as this is my blog I guess I can write about whatever I like ;o)). I want to put my experience out there in case there’s anyone else that suffers from any of these conditions who wants to connect with / hear from someone that can understand what they’re going through.

I've never really had anyone to talk to who also suffers from the same health conditions as me, or rather, it may simply be the case that there is someone in my life who does suffer from one (or more) of these conditions but I just don’t know about it. You see, until a few years ago, I never used to feel comfortable talking about my conditions, not even to my friends, because I was so incredibly embarrassed by them, especially my psoriasis. I spent the best part of 10 years trying to hide my scalp psoriasis from the world as I was so ashamed of it, like it was some dirty secret. So I guess if I felt like that then it’s possible that others may feel that way too.

So you may be wondering what changed? Why am I all of a sudden willing to talk about it? Well, first of all, with age comes confidence and with confidence I've grown to be more comfortable in my own skin. I no longer care whether people know what I suffer from or not. Nowadays I don’t care if people I meet stare at my deformed fingers or discoloured nails or the psoriasis patches on my elbows. I no longer go out of my way to hide what I suffer from, partly because some things like my fingers and nails can’t be hidden but primarily because I’m comfortable with who I am and what I have.

Aside from confidence, I learnt to put things in to perspective because what I suffer from, as terrible and painful as it is at times, it isn't likely to kill me. This is quite a recent achievement because I did use to have a lot of thoughts along the lines of ‘Why me?’, ‘What am I being punished for?’ etc etc but then when I saw people I knew go through health issues that could kill them, it kind of put mine into perspective. For a while I swung the other way, thinking ‘Well why not me?’, ‘What’s so special about me that means I shouldn't suffer?’ or ‘If someone has to have this damn disease then why not me?’. Now I don’t have any of those thoughts, not the ‘Why me?’ or the ‘Why not me?’, now I just accept it for what it is and try to deal with it as best as I can – acceptance of things for what they are is something else that I've learnt to do recently and it’s amazing how much inner peace that has brought me. Acceptance doesn't mean that I've given up or that I’m not going to try to improve things, it simply means that I've re-focused that energy and voice in my head that was always asking ‘why’ towards a more constructive direction.

I've also redefined my definition of true beauty. To me, true beauty is no longer about what the eye can see but what the heart feels. This is not an easy concept given the superficiality of the world we live in and how ‘beauty’ is defined in our society. It’s certainly not a concept that I as a teenager or even in my early 20s would have got my head around. I wish I had because I might have been a happier person. In my 20s I spent so much time hiding any physical signs of my psoriasis that I missed out on a lot of 'living'. My psoriasis and arthritis may affect how I look, my outer beauty so to speak, but it doesn't change who I am as a person and it doesn't change the way I can make people feel or the way people can make me feel.

Over the last couple of years I've taken ‘active’ control of my health conditions. I must admit, this was primarily forced upon me with the move to Singapore and dealing with a completely different type of healthcare system. In addition, towards the end of 2011 I hit my lowest point ever regarding my health and realised that I could no longer carry on with the way things were and had to take control. One of my biggest regrets of my 20s was not taking active control of my scalp psoriasis and just letting my GPs (family doctors) fob me off with one treatment after another that made no difference and I eventually just gave up hope, hope of ever getting better. Looking back now, I know I should have been more proactive – hindsight’s a wonderful thing, isn't it?

Finally, I guess the other significant thing that changed was that I met my darling hubby and he gives  me so much support and encouragement and makes me feel beautiful despite my scaly skin, discoloured nails, wonky fingers and that really does work wonders ... for me, my confidence, my self esteem and especially my emotional health. Unconditional love and support can do amazing things!

So there you have it, those are some of the things that did change and I’m sure there are others but I’ll cover those in my posts on each condition over the coming weeks. For those of you not interested in this mini-series, don't despair there will be my regular mish mash of posts alongside this mini-series.

Apologies that this is quite a text heavy post and I imagine the ‘Living With ...’ posts that will follow will also be text heavy but I’ll try to include the odd pretty picture in there ;o)

Love Sheen xxx

Sunset on Langkawi island (Malaysia)

Sunset on Langkawi island (Malaysia)

Making Up For Lost Makeup Time

Good Day Everyone,

In the past 6-12 months I’ve probably bought more makeup than the past 6-12 years (believe me these pictures are just the tip of the iceberg ;o). It’s not that I didn’t used to wear makeup, I just wasn’t ever that passionate about it. However, I’m sure we’re all familiar with the saying ‘you don’t know what you’ve got ‘til it’s gone’? My makeup didn’t go anywhere, in case you were wondering, but what did go was my ‘mojo’ and my zest for life.

The steroid medication that I was taking to manage my arthritis made me gain so much weight that my petite frame of 4’ 11” (1.49m) was being distorted out of proportion (or so I felt!). I moved to Singapore being a size bigger than I was used to and whilst here I just continued to gain weight. I hated looking at myself in the mirror and as I got bigger and puffier I stopped bothering with makeup and taking pride in my appearance. I was incredibly down in the dumps. When I gave up work to concentrate on my health I had less of a reason to wear makeup because I was at home most of the time - nobody I knew was going to see me!

However, as I came of the steroids, lost the excess weight and started exercising to manage my arthritis I found myself again :o) I still take medication for my arthritis but this one doesn’t have weight gain as a side effect! Losing the excess weight was a huge confidence boost! I had to go out and buy a new wardrobe in my smaller size 10. Whilst I’m not the slimmest I’ve ever been, I suddenly had a huge appreciation for my slimmed down figure. I didn’t care about being a size 6-8 again like I was in my 20s, I was just overjoyed at not being a size 14 anymore and more importantly looking in proportion again. I no longer despair about having wobbly thighs or not having a flat stomach or prominent cheek bones. Instead, I now appreciate the figure that I have more than ever before because I know one day, as my arthritis progresses over time, I will have to go onto more potent medication that will most likely result in weight gain. So until then I’m going to make the most of the figure I have :o)

Over the past few months I’ve been re-discovering makeup (as you can see from the photos) and have developed a bit of a passion for it. Its sooo colourful and sparkly and pretty – I love it, plus having Sephora nearby really helps! Having more time on my hands has meant I can actually shop at a more leisurely pace which has led me to explore and seek out new products. I also had a special event recently (more on this to come) for which I decided to do my own make so naturally I needed to practice ;o)

When it comes to makeup, I believe in focussing on what I think are my best features and for me that is my skin (I’m extremely lucky to have inherited my mum’s good skin – I really can’t take much credit for it!). Quite ironic really given that I’ve been a psoriasis sufferer since I was 17 (luckily it has never spread to my face). The other feature that I tend to focus on is my eyes (well eyebrows to be precise but hey they frame my eyes). So I’m on a mission to find my ‘perfect’ mascara, eyeliner, concealer and foundation and have also invested in some eye shadow palettes.

I’ve had so much fun playing with all these new colours and textures that I think my hubby is a little concerned that it’s turning into a bit of an obsession, but I can read him like a book, and I know he’s just happy to see that I’ve found my mojo and zest for life again.

Have you found your ‘perfect’ mascara, eyeliner, concealer and foundation? Which brand was it? Which makeup brand do you think does the best mascara / eyeliner / concealer / foundation? I’d certainly welcome any recommendations :o)

Love Sheen xxx

My Journey To This Blog

Hi there, how are you? Good I hope! Let me start by introducing myself. My name is Sheen. I am a British expat wife currently living in Singapore with my hubby. 

After ten years in a career that I was lucky enough to enjoy, I've been forced to take a career break due to health reasons :o( About a year before we moved out to Singapore I was diagnosed with my third and most debilitating chronic illness, arthritis (psoriatic arthritis to be precise). Having suffered from psoriasis and migraines since my teenage years I was now faced with a condition that affected me in a way that the other two had not. Whilst I suffered from quite horrific migraines, I wasn’t suffering from them continuously (although it did feel like that at times), and whilst the psoriasis was there all the time there were times, albeit very occasionally, that I would forget about it, but this arthritis was there all the time and there was no way this disease was ever going to let me forget who the boss was (not me that’s for sure!).  

Eight months after we left all our friends and family and everything that was familiar behind to begin our Asian adventure I hit one of the lowest points in my life. My arthritis was very aggressive, I was in constant pain, I gained so much weight due to the steroid medication I was taking that I no longer recognised myself in the mirror, I was suffering from regular migraines that were so severe they prevented one of my eyes from opening fully, my psoriasis was going nuts again but most alarming of all, I felt complete and utter despair – I was sooo unhappy! So at the end of 2011, with the support of my amazing hubby, I made the decision to give up work so that I could gain some sort of control over my life and most importantly my health – both physical and mental. 

I spent 2012 getting healthy again and it sure worked a treat :o) My migraines have practically disappeared (more on this later). My psoriasis is the most controlled it’s ever been in the last 17 years and my arthritis, whilst it’s still very much ‘alive and kicking’ it is no longer making me as miserable as it did in 2011 (even though I now have more joints affected). You see, I’ve learnt to live with it in a more ‘harmonious’ manner. It no longer feels like the ‘boss’ of me, rather we have developed an understanding, and now it feels more like a long term ‘companion’.

This year (2013) has been spent exploring and contemplating about what I want to (and can physically) do with my life now that going back to my old career is no longer an option. And so here we are! I’ve decided to use this blog as outlet for my lifelong passion... colour, in its many different manifestations, because colour is the one thing that has ALWAYS made me happy and I want to be happy because life’s no fun otherwise! No doubt I'll also be talking about the ups and downs of living life with chronic illnesses, especially arthritis. I will probably throw in a few other bits and bobs for good measure like aspects from our lives in Asia and anything else that takes my fancy. So why don’t you come along for the ride for you never quite know what’s around the corner –ooooh how exciting!!!

Love Sheen xxx

P.S. I love looking at photos on blogs (it makes them so much more interesting) but in inevitably there will be posts where photos are not really relevant, in which case, I will probably add photos of nature / sights (like I've done here) just so that there's something colourful to look at ;o)