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The Wedding Guest

Going to any function when you have psoriasis can often bring on bouts of anxiety. It’s not just thinking about what to wear to cover your skin or whether you feel brave enough to bare your scars. For me it is more about what to put on my skin. Yes, men get these worries too and so many of us choose to ignore or not discuss it because it is not perceived as something men should do. Even if you discuss it with yourself in your head it’s good for you, don’t feel you have to “man up” and just grin and bare it.

As a guest at a wedding later today I have spent what feels likes a month deciding what to wear. Well I knew I was going to wear my best suit, it’s what it’s there for. I have been preparing though. My scalp has been a bit flaky so there’s been some intense treatment to calm that down. I have just purchased a navy blue trilbury too so I have to be flake free. I don’t want anything to show on my hat or the shoulders of my jacket.

Then I had to think about a shirt because I have to think about is my skin irritable, will it be hot. Luckily it seems the weather has gone cooler so I have gone with an Egyptian cotton shirt. It’s soft, not too tight fitting, even though it’s tailored, and it’s thick enough that if warms up a bit I will still be comfortable without a jacket.

What next, ah yes, my legs. These are the worst part of my body. Obviously no shorts today but going back to the suit I will explain why this causes concern. The suit is from Savile Row, the iconic British Street which is home to some of the best tailors in the world. So yes it wasn’t very cheap and as you would expect it is made out of a very good material, material that would not get on well with my greasy ointments. A few months ago this may have cause me a lot of anxiety as my legs were pretty scaly and I would have to seriously consider wearing a different suit.

I have had a bit of luck with how to prepare for the suit though. Firstly, I woke up at 3 am this morning and have struggled to get back to sleep. This is not actually due to my psoriasis, this is more that my head is flooded with thoughts of the new house my wife and I took the keys for yesterday. So exciting times are ahead and the most stressful bit is out of the way. Why is it lucky I woke up so early? Well as I couldn’t sleep I thought I may as well put my Dovobet gel on now as it will have a good number of hours to soak in and work its magic before I need to shower. I have been making sure I keep my treatment regular this week also.

Also recently I have been lucky enough to receive a few gifts in the post recently.  One being a tub of Hydromol ointment. It is the waxy oily kind of ointment and I find this great to slather on before a shower. I wouldn’t put it on before getting dressed as it wouldn’t be comfortable but as something to seal in moisture and protect your skin whilst showering it is perfect. Even washing doesn’t dry your skin out if you put this on.

The other gifts were from Galderma who sent me some of the products from the Cetaphil range. I have been using their Restoraderm Skin Restoring Body Wash and have to say it probably is the best body wash I have used to date. You don’t need a lot, you feel clean and you don’t get that dry tight feeling after you shower. Even without the routine above of coating my body with Hydromol, it still works well.

After this I use something I have been wanting a long time. It is a new product they have called Moisturising Body Mousse. What can I say? It’s brilliant. Again you don’t need a lot to go a long way and it is great if you have a few patches of psoriasis rather than total coverage as you can use this all over. It’s not just your psoriasis patches that need moisturising, you do need this all over and the mousse is excellent. It is really light and soaks in quicker than anything else I have come across. This means you don’t feel like you need to let it soak in for half an hour or so before getting dressed. You can put it on and in seconds feel dry enough to dress.

Also, the mousse isn’t greasy so when you’ve got a fine suit or that special item of clothing you want to wear there is no worry. If you have severe psoriasis thought his really won’t be the product for you. So that’s the suit sorted then. No staining, no stickiness, I can wear my suit and not only look good but feel good.

So that’s how a man chooses both what to put on his skin and what to wear to a wedding. A wedding where the invite is to my wife and I. Psoriasis has not been invited. I might post a pic once we’ve been to he wedding.

For more info on Hydromol please visit http://www.hydromol.co.uk/hydromol/home/ You should be able to find a 500g tub of the ointment is around £8.00 in most chemists.

For information on Galderma ranges including Cetaphil please visit http://www.galderma.co.uk/ Please note that the mousse is a brand new product, it should now be available in most Boots stores. RRP £13.99.

Conditioning the mind

Those who have had psoriasis or psoriatic arthritis for some time will know about getting into a routine and having the right mind-set to fight both conditions. You need to train yourself into applying creams at certain times, trying to make sure you follow your treatment plan without fail no matter what. Learning how, when other things get in the way, how to adapt your routine.

You also need to find something inside to give you the resolve to keep fighting, to get up every day despite how tired you feel and keep going. Your mind is the key here, it just needs conditioning. I only mention this as I have heard it said or heard people saying similar things. This is great, yes it’s true we do need to get the right mind-set. However, psoriasis and psoriatic arthritis also try to condition your mind.

This has struck me recently as my skin is doing better and my arthritis is not aching as it has done. In fact, apart from my hand, the aches in the rest of my body have been either non-existent or very mild for some time now. The only thing is I can’t get out of the routine that both conditions got me into.

When my skin and joints were particularly bad, if I woke during the night or early in the morning I would have to move. My back stiff or knees and shoulders aching, skin itching. I had to move as the pain of laying there was too much. With itchy skin the first thing you feel when you wake, again you just feel the need to move. Partly so as not to disturb my wife who would be sleeping beside me. Oh and that’s another guilt trip psoriasis plays on you. You’re the one with the chronic illness, the one who can’t sleep properly and feels tired most of the time and you’re the one who feels guilty about waking your partner.

Anyway, where was I? Yes, waking up aching and itching would always lead to going downstairs, trying to get the joints moving and finding the painkillers in a hope sleep may come back. By this point though my brain was usually wide awake and going through the depressing dark thoughts I often had when my condition was particularly severe. Most of the time sleep would not come and I would end up watching tv and surfing the net and mainly noticing that most of the people on twitter at that time were chefs. This only led to raising my admiration of chefs and others in hospitality with the early starts and rarely would I see them complaining. More, you see the love and passion for their work. I know there are other early starters and workers, the night-shifters. These are usually busy working rather than on their way in to work to be able to tweet.

Back to present day. I have been up since 5.50 a.m. and it is now two hours later and I have not found sleep. Not because I’m itching, tired or aching. It’s just something I do now. I actually laughed at myself earlier when I thought about this, thinking if I feel okay why didn’t I just roll over and go back to sleep. Psoriasis and psoriatic arthritis have trained me not to go back to sleep. Annoying because come about 5 or 6 this evening I know I will be feeling very sleepy and by about 8 or 9 I will probably go to bed. My day gets shifted a couple of hours forward. Great to get a head start on the day but when no one else is awake I can’t really do much except write a post on my blog. So you can guess when most of my posts are written.

The challenge now is to see if I can recondition my brain to not wake up so early or, if it does, to go back to sleep for a couple of hours. Somehow at the same time, I have to keep the treatment and fighting mind-set so it is just one bit that needs re-tuning rather than whole re-set. But then, if I do manage to recondition my head, when will I write my blog posts?

Continue Reading »

Late 2014 I was invited to the offices of Aurora Healthcare to take part in an interview about psoriasis. It is a frank interview with no preparation as to what the questions would be. I hope that watching it will help people understand what it is like to live with psoriasis. If you do watch it, thank you for taking the time.

Alternatively you can watch this via You Tube as below:

SD version

HD Version

Mobile Version

Please note, the video was funded by Novartis.

Changing the routine

Following UVB light treatment last summer, which unfortunately only gave me about a month’s clearance, the last 10 months have been all about control of my condition with varying degrees of success. The first few months were fine but then a slight flare up around February this year led to more patches appearing and the fight against flaking starting again.

I went through numerous creams and ointments, trying new things, bathing and so on. Then came the idea to move house (which annoyingly still hasn’t happened yet) so there has been added stress since April. Add in a health scare, which has turned out to an infection of which I am now clear, May and June were particularly stressful.

Some who read the blog will know I tried a new product, Philips BlueControl LED. I had high hopes for this and have to admit defeat. That is not to say that it does not work, it just didn’t work for me, As the name suggests it controls psoriasis and if you add stress and bad health into the equation it could prove not to be as effective as it should be. I did go through a couple of weeks not using my topical steroids whilst using it and my skin got no worse. Effectively it kept my condition stable so this does show that is has some kind of effect.

I do feel I may have been a little unfair to BlueControl as I have quite a few patches, 7 on one side and six on the other side of my body (plus other spots here and there. With each treatment session taking 30 minutes this could mean trying to find up to three and a half hours each day to take the treatment. So this just didn’t fit into my work and home life. It should not discourage others from looking into it and giving it a go though.

So how have I managed to start clearing my skin. Well the stress levels have certainly not dropped. We have not yet moved and are becoming increasingly frustrated with how long everything is taking and I was only given the all clear by the hospital yesterday that there was no serious underlying issue with my health.

My routine has been this:

Shower every day, bath 3-4 times a week. I know, water dries your skin out and people with psoriasis often shy away from showering or bathing too often. When showering I have been washing my hair with Alphosyl 2in1 shampoo and also using it as a body wash on alternate days with Dove deep nourishing body wash. Yes, Dove that you buy off the  shelf and isn’t medicated.

When I bathe I put a drop or two of Alphosyl in the running water along with a good squirt of Aveeno body wash, also using Aveeno to wash with.  Once or twice a week I will also slather on an emollient before getting in the bath. Generally this will be Diprobase or Boots Derma Care moisturising cream, something thick and rich. In the bath I regularly add in a mix of dead sea and Epsom salts.

Once out of the bath I put a light lotion on so I don’t feel too sticky and currently have been using Aveeno moisturising creamy oil as this soaks in really well. After that goes on either Dovobet Gel (Ask for the gel, it’s so much better than the ointment) or Dovonex although usually Dovobet at the moment. Also applying the same in the evening a couple of hours before bed At the weekends I do something that I am not sure is right but it is working. I will put on the cream, then Dovonex and follow this an hour later with Dovobet. It was using the two products in conjunction lie this which really started to make a difference.

Now I am not sure if using a shampoo as a body wash and using two prescribed treatments together is correct or would be approved by my derm. The thing is when nothing else works, we become desperate and from desperation comes invention. This is nothing really harmful in Dovonex and it is not a steroid so I thought, what the hell. I am sure I am not the first psoriasis patient to use treatments in places they are not meant for. Please note though that as I ma not a doctor, I cannot recommend you do the same, I am writing this to make a point. The lack of effective treatments leads to us making or own.

I may as well add for my scalp I am using Betnovate and dab a bit on my fingers to do the inside of my ears. So there you have my current routine. Sounds like a a lot but in the morning I am showered and creamed up in half an hour. I always have a moisturiser and dovonex with me in case I need a top up during the day. The difference it has made is this:

9th May

9th May

The picture about is from the 9th May, you can see flaking and scaling which has been constant up until three weeks ago when I changed to the routine above. Below you can see the same leg is still red but has no flaking or scaling.

26th June

This may not look like a massive change but to a psoriasis patient it means a lot. No flaking means a lot less itching and no itching means restful nights, reduced stress and much less discomfort. I still won’t wear shorts but at least I’m not spending all day scratching, feeling tired or worrying about the pile of flakes I am leaving under my desk at work.

Money saver notes:

You can get this in double packs and my GP found he can then give me two of these on your NHS prescription so you get four bottles instead of the normal two.

Look out for offers in Boots if you want to try the creams I mentioned, they are often on 3 for 2 or other deals. Bulk buy when on offer.

The most cost effective bath salts I’ve found are Westlab, £4.99 for a kilo bag. They also do Himalayan as well as Dead Sea and Epsom. .

QualityCare™ by Leo

I have been working Leo Pharma for a few months now with their website, QualityCare™. There were many phone calls, discussions and meetings before I decided to get on board with, what I believe, is a great source of reliable information on psoriasis.

QualityCare™ is a site for patients, healthcare professionals and carers providing information, advice and real life experiences. The information on the site is reliable as it is checked, double checked and triple checked. I know some people are wary of Pharma company sites, thinking they are selling their products. However, nothing is sold on the site, it has been developed purely to help people and most importantly, patients. It has also been written in conjunction with psoriasis patients.

The patients in the blogger universe are:

Helen a.k.a Flaky Fashionista. Helen will be talking about fashion & what to wear so even if you’re flaking you will still look fabulous. Helen is  on Twitter as @FlakyFashnista and has her own blog http://www.theflakyfashionista.com

Jess is a young woman who talks about work, meeting new people and going on holiday. Jess is also a fellow blogger with her site https://jessicaandpsoriasis.wordpress.com and can be found on Twitter as @jessnpsoriasis

Rena, the beauty expert. Rena is a professional make-up artist who will give you tips and advice on how to look amazing. She is a psoriasis warrior who wears her scars with pride. Rena also has a blog https://psoriasisexposedbyrena.wordpress.com/ and is on Twitter as @RenR179

Then there is me, the foodie. I will mainly be talking about my passion of eating and cooking. There will not be much about telling you what you should or shouldn’t eat. It is more about enjoying your life and living without psoriasis controlling you. If you want to follow me on Twitter it is @SImonlovesfood

Last week saw the official launch of the Site and App and I was honoured to speak on behalf of the patients, along with Rena, about our experiences with psoriasis. We were joined by Anthony Bewley, Consultant Dermatologist, Barts Health, and Reena Shah, Specialist Clinical Psychologist in Dermatology, to give the healthcare view. It was great to meet both Tony and Reena who showed they care deeply about the welfare of the patient and are making a huge difference to people’s lives. It again brought into focus that psoriasis is not just a skin thing, there is a psychological impact also.

When you log onto the site you will be asked to log on, whether your create a full profile is up to you. I urge you to use this resource. Being a pharma company, Leo have to go through several stages of approval to ensure the information is both accurate and reliable. So whether you have psoriasis, care about someone who has it or just want to know more, it is a great resource.

Along with the site there is a new App also, MyPso. The app is very simple to use is available on Android and Apple, just search MyPso by Leo in your market places and you should find it. The app allows you to track your symptoms and treatment, you can even put in what seems to trigger your flare ups to give you an overview of your psoriasis. There is also the ability to take photos of your patches so if you are on a treatment plan you can keep a record of how your skin is improving (or not). The results of this can all be produced in a pdf report which you can print off, view on your mobile device or even email to your doctor. It helps you prepare for your next appointment with the doctor and makes sure you don’t forget to tell them anything. The App also has a reminder tool so you don’t forget those all important treatments. The app is also completely anonymous.

I have been “itching” to tell you all about this as it has been extremely exciting to work on and have put a link to my first post here. If you haven’t visited the QualityCare™ site before it will give you a free view, to view again later you will need to create a profile.

QualityCare™ http://www.qualitycarebyleo.co.uk

Twitter @SkinCheck

 

Thought I’d open this old argument. There is a lot of rivalry with psoriasis, sometimes you see patients trying to outdo each other saying “Oh I had 50% coverage” followed by “Well I had 75%” and then someone else comes along saying “I had 85%, you know nothing (John Snow)”. That last one is usually me, I used to think I had the worse psoriasis going, no one had it as bad or has ever had it as bad as I did. Then I met other patients, read other patient’s stories and I realised that maybe I didn’t have it quite so bad. Yes is was severe but I wasn’t suffering as much as some people.

Now that I’m considered moderate I feel that I may actually have a tougher time of it than I did when 85% of my skin was covered (yes the 85%-er was me). Some of you may laugh at this and think, how can my skin be clearer and yet feel that I am worse off. It is quite simple, there is no treatment as such for me and here is why. When you have mild psoriasis, and by this I mean only a few small patches or just one patch, you have a multitude of creams to use and you don’t have to be covered in top to toe in greasy creams. You can pretty much get on with your life as normal and your psoriasis is an occasional irritation. Before anyone with mild psoriasis starts saying I don’t know what I’m talking about, I started with one patch on my leg so I have personal experience of such a mild case of psoriasis.

If you are unlucky enough to have a major flare up and become considered as having severe psoriasis there are fairly clear paths laid out. You go to your GP, you get referred and the options are topicals, biologics and light therapy. They will be prescribed by your consultant and supported (hopefully if your hospital is good). Yes it is a really bad place to be in, I have been there and literally was tearing my skin off in desperation. The thing is, you can get treatment easily because your skin looks so damn bad.

So after having all the hospital treatment, your skin clears and slowly the psoriasis comes back. You are able to manage it to a degree but it bothers you because it’s covering a fair bit of your body, most of your lower legs, patches on your arms, back and scalp. It means that the topicals are being used up pretty quick and you’re back to feeling sticky. What happens now? You can see your GP, which I do, and get some more creams and ointments. Your GP may even contemplate referring you but your GP knows that he hospital will turn you away when you get there. They will say, sorry, your skin looks okay to us. It looks okay? Well thanks, it may look okay to you, but it looks pretty bad to me. So it is okay to have nights interrupted with itchy skin, it’s okay to not want to wear short trousers or sleeves in public, it’s okay to feel sticky and greasy, it’s okay to leave a pile of dead skin where you sit and feel embarrassed? I guess then I shouldn’t complain as everything is okay.

I refer to moderate psoriasis as the black hole of psoriasis. You don’t really fall into any specific section. Your skin is too severe for your GP to really do anything about and you’re not severe enough for the consultants to spend their time on. The moderate psoriasis sufferers are like the forgotten people. We may as well be told, come back when your skin is worse, we’ll be happy to help you then.

Surely if we stop psoriasis getting worse at the moderate stage it would save time, money and people’s mental well-being. Why do we need to have severe psoriasis to be taken seriously? If someone breaks a finger, the hospitals don’t turn them away and say, sorry it’s not that bad, come back when it’s your arm. Anyway, I have the worst case of psoriasis and so do all of you. We have psoriasis, it’s bad at whatever level you have it.

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