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Summer is approaching, well this is Britain so I think it’s approaching. Seen some blue skies and we had a couple of hot days, summer might even be over already. Anyhoo, the season itself is on its way and this means sunny days, holidays and the thought of whether to bare skin or not.

Now this post really is for those who aren’t brave enough. Let’s face it, if you are confident to bare your skin then that is great and you clearly don’t need advice from me as I am still in the cover up clan. Let me add though that I have never been that confident to show too much skin, my legs are white and pasty and trust me, you don’t want to see them wandering down the street.

So for those that are like me and want to cover up but stay cool in the hot weather these are my top tips:

  • Wear linen, it is light and cool and often feels good against your skin when you have a flare up. I generally wear short sleeved linen shirts as my arms aren’t too bad.
  • Covering up isn’t a bad idea in the summer anyway, Think of the hot countries wear the locals tend to cover up because of the sun. Not having direct sunlight on your skin can keep you cooler.
  • Wear a hat. Okay, this won’t cover your legs or arms, it helps you stay cool though. Don’t go for dark colours as these will just make your head hotter. There are some really nice straw type hats these days and thanks to the likes of Olly Murs, Jonny Depp and other stars, hats are very much seen as a cool fashion accessory. Keeping cool when you have psoriasis is essential as it will stop you feeling uncomfortable and hopefully keep the itching at bay.
  • I have psoriasis mainly on my legs and even being quite clear you can see the darker patches it often leaves behind. To compromise I will sometimes go for three quarter length trousers. I feel like I’m wearing shorts but pretty much covered at the same time and hardly notice anyone staring. It gives me a bit more confidence than wearing normal shorts.
  • Use sun screen. I know UV light can help us, please do not burn yourself though as this could make your skin worse. Use at least factor 15 or higher. You will still get the goodness from the sun. I usually go for factor 30 and find my skin still improves in the sun.
  • There are some moisturisers out there with sun protection too so keep an eye for those. Your local chemist should be able to advise.
  • Keep away from moisturisers with sun-sensitizers. There are more than you may realise and some of the big brands are in this group. This is where the cream makes your skin more sensitive to sun and in turn you will be more likely to burn. Again ask your pharmacist or healthcare professional. If you are seeing a dermatologist they should be able to advise also.

 

Please note that this is not intended to give healthcare advise. Please always consult your GP or healthcare advisor.

 

 

This year sees the return of the Psoriasis Shout Out®. It is a great event which even Bob The Cat has got behind. If you need advise on psoriasis whether you are a patient or someone who lives with someone with psoriasis drop by and have a chat. I am very happy to be able to attend the event at Guys Hospital on the 24th June, unfortunately Bob can’t make it.

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What is the Psoriasis Shout Out®?

The Psoriasis Shout Out® is a unique public engagement initiative to raise awareness of this chronic, often life-ruining, inflammatory skin condition. We aim to get people talking about psoriasis (what it is and what it isn’t) and to bring patients together with professionals working in the field of psoriasis management and research to discuss current research and treatment.

The Psoriasis Shout Out® is led by Professor Chris Griffiths, a world-leading psoriasis expert from the University of Manchester and Salford Royal NHS Foundation Trust. We have established a dynamic group of patient ambassadors from across the UK and Ireland who have played a key role in taking the Psoriasis Shout Out® forward by informing and supporting our activities and events. 

Psoriasis Shout Out® Roadshow June 18-24 2016

Building on our previous success, the Psoriasis Shout Out® is expanding its reach beyond Manchester to other regions and cities in the UK and Ireland in 2016. Researchers, clinicians, patients and the public are again joining forces to raise awareness of the condition with the aid of a healthcare trailer and a number of free patient events planned in Manchester, Dublin, Newcastle and London. Our Psoriasis Shout Out® Ambassadors will be on hand to provide peer support, acting as ‘patient experts’ and signposting members of the public to further information on psoriasis.  

Healthcare Roadshow 

The roadshow has a fully-equipped healthcare trailer where members of the public can engage with healthcare professionals and other people living with psoriasis. In Manchester, the trailer will have sessions on Mindfulness and Bhangracise – a new fun way to keep fit. In Dublin, the trailer will be hosted by Professor Brian Kirby (Consultant Dermatologist, St Vincent’s University Hospital, Dublin) and Helen Hanrahan (Flaky Fashionista), an experienced fashion blogger and patient advocate. 

The trailer will be at the following locations in Manchester and Ireland during June:

  • 18-19 June Piccadilly Gardens, Manchester
  • 20 June The Rock Shopping Centre, Bury
  • 21 June St Ann’s Square, Manchester
  • 22 June Salford Royal NHS Foundation Trust, Manchester and
  • St Stephen’s Green, Dublin
  • 23 June St Stephen’s Green, Dublin 

Free Events 

We will also be holding a number of patient events at various locations during the week. More events will be added to the schedule before June and will be announced on our website and social media accounts.

18 June, Manchester Central Library, St Peter’s Square, Manchester 

Let’s Talk Psoriasis A series of presentations and speaker/audience discussions on a range of topics about living well with psoriasis, advice and current research into the condition chaired by Prof Chris Griffiths with guest speakers including Toby Hadoke (actor, comedian and patient advocate).

Look Good, Feel Good Helen Hanrahan (Fashion blogger and patient advocate) and Rena Ramani (make-up artist) will demonstrate how to improve confidence in your appearance using fashion and make-up tips to help you camouflage, conceal and even embrace your psoriasis!

21 June, Royal Victoria Infirmary, Newcastle 

Clinical speaker presentations with Q+A session chaired by Prof Nick Reynolds (Consultant Dermatologist), mindfulness sessions and a staffed patient information stall.

22 June, Salford Royal NHS Foundation Trust, Manchester 

Let’s Talk Psoriasis A series of presentations and speaker/audience discussions on a range of topics about living well with psoriasis, advice and current research into the condition chaired by Prof Chris Griffiths with guest speakers including Carla Renton (The Psoriasis Association) and Dr Richard Warren (Consultant Dermatologist).

Pso Well Training Taster GP training events, based on research evidence, to provide cutting edge knowledge about psoriasis and its comorbidities and to equip GPs with consultation skills to assist patients in self-managing their condition more effectively.

Talking About Psoriasis With Your GP Getting the most out of your GP consultation with Dr Chris Bundy and Dr Anna Chisholm from the University of Manchester. This session aims to give patients with psoriasis the confidence and skills to get the most out of their often time-limited consultations with GPs.

24 June, The Atrium, Guy’s Hospital, London

Clinical speaker presentations with Q+A session chaired by Prof Catherine Smith (Consultant Dermatologist) and Dr Sandy McBride (Consultant Dermatologist) with support from high-profile patient advocates including Toby Hadoke and a staffed patient information stall.

Psoriasis: A Life Story Preview of a unique production, performed by patients, giving their perspective of living with psoriasis.

Patient information leaflets, videos and other educational material on psoriasis will be available at all of our events.

 

For more information please contact:

Susan Moschogianis, Psoriasis Shout Out® Coordinator 

Email: susan.moschogianis@manchester.ac.uk

Tel: 0161 206 8077 | Fax: 0161 206 1095

www.psoriasisshoutout.co.uk

 

I was thinking the other day about what I would give to have never had Psoriasis in my life. At the time I was watching Doctor Who and it made me think of going back in time and changing my timeline. Is having Psoriasis one of those points in time that I cannot change, that would always happen no matter what I did? Or is it possible to go into the future, find a cure or vaccine, bring it back and stop my younger self ever getting it at all?

There is a slight problem that I am neither a Time Lord nor do I own a Tardis, well not a real one. At least I don’t think the one on my key ring counts. Anyway, it got me to thinking, would I really want to change things? It is one of those deep philosophical questions one asks themselves from time to time and in true Simon fashion I went down the Doctor Who route rather than anything deep and meaningful.

If I seriously ask myself the question then the answer is “I don’t know”. Psoriasis has taken me on  journey not just to new places, it has taken me on a journey through my soul. I have gone from slightly irritated by it, to annoyed, angry, depressed, denial (a river in Egypt). See I just can’t stay serious about it no matter how hard I try.

What I do know is that Psoriasis has taken me to places I never thought I would go. I have been to Parliament for the launch of an awareness campaign. Psoriasis has had me chauffeured around Dublin and invited me to various companies to discuss and share experiences. Without Psoriasis I would have done none of this.

Psoriasis has introduced me to new people, some of which are now very good friends. It has made me part of a global community. Something very alien to a person who in the past has never had a large circle of friends and was always so keen on his own company above others.

Psoriasis has had me on the radio, on tv, I have been interviewed numerous times and even called upon to consult,and soon what will be my third professional photo shoot. I have even part written a book with my wife and some of my psoriasis friends. My life, no matter how much I want to have psoriasis out of it, is very much because of psoriasis. It is one of those strange situations where I find myself being grateful for psoriasis. I would not be the person I am today without it. I would have been someone else (see my last post).

The journey will continue and, unless there is a cure, it will continue to take me to new places, beyond civilisation, to boldly go…….. oh hold on, that’s Star Trek. I get to steer every now and then too, see psoriasis isn’t all bad. Psoriasis just needs a bit of guidance, a bit like an unruly teen or a poorly trained dog.

There is something else though, others are on this journey with me which makes travelling with psoriasis much easier. My wife, my family, friends, healthcare professionals, pharma companies and those who work every day to support and raise awareness and don’t forget Bob the Cat. They have all decided to come along with me so I don’t let Psoriasis take the lead too often and to make it fun.

So Psoriasis, here’s a surprise for you, thank you, sincerely from the heart of my bottom. (Yep, definitely can’t stay serious.)

 

Who am I? Who am I? I’m Jean Val…… sorry getting carried away there. I don’t quite have the singing voice to be in Les Mis. I don’t know why I started thinking about this, it suddenly popped into my head about who I am and what kind of person I am with Psoriasis. Also who I like to think I am.

So who Am I?

I am a snake who hasn’t quite grasped the skin shedding process.

I am an X-Man with the mutant power to grow skin extremely quickly. Don’t cross me or I’ll shed skin all over you.

I am the Itchy and Scratchy Show when I have a flare up.

I am Grumpy from the Seven Dwarfs when psoriasis is affecting my sleep or particularly irritating.

I am Happy too, I live  life my way… maybe I am Frank Sinatra as well.

I am negative.

I am positive.

I am prone to sudden mood swings. (See the above).

I am stronger than I thought, I have the power to fight something that is battling back just as hard every single day.

I am part of a community and a family which continues to grow.

I am lucky. I have supportive and understanding family and friends who have forgiven my tantrums, helped me through the lows and laughed with me during the highs.

I am one voice raising awareness.

I am Simon.

Who would I be without Psoriasis? I’d still be Simon, I’d just have lost my mutant power, think I’d be Wolverine instead. That way I could be Jean Valjean too. (I know some will get that connection).

 

**Please note that the closing date for nominations has now passed**

I have left this post live as I think it is a great award and should be known that the nurses that help us are being recognised for all their hard work.

I have received an email about this great award recognising  the work of Psoriasis nurses. From my personal view, the nursing staff have bee pivotal to my treatment and are the ones who have made me open up more at appointments. They listen to my troubles, share a joke and gained my confidence as I have had to show the extent of my psoriasis to them. I have pasted the email below:

 

“Just wanted to let you know about the ‘Psoriasis Nurse of the Year Award 2016’ which launched this week.  This new award, supported by the British Dermatological Nursing Group and the Psoriasis Association, recognises the critical role of nurses, and the difference nurses can make to people living with psoriasis in the UK and the Republic of Ireland.

 Anyone living with psoriasis, including their families and friends, can nominate their nurse. The nomination form can be downloaded at www.bdng.org.uk/whats-on/awards and the closing date for submissions is 23rd May. Forms can also be requested by emailing nurseaward@redconsultancy.com.

The winning nurse will receive their award during the BDNG’s annual conference in Bournemouth on 22 June 2016. The person who nominates the winning nurse will also be given the chance to present the award in person.

I’m sure you will agree that this award will be a great way to recognise a nurse who has gone above and beyond in caring for people with psoriasis.  Please do feel free to pass this information on to anyone who you think may be interested in nominating their nurse for this award.”

 

I would like to thank every nurse out there. So often overlooked for the work they do and from my side it is greatly appreciated. You have helped keep me well and sane.

 

Finding Inner Peace

Phone rings…. “Hello”?

“Oh hi, is that Inner Peace?”

“Yes it is, that must be Simon. Where are you?”

“I’m not sure, my sat nav says I’ve arrived but I’m outside the train station, I can’t see your house.”

“Ah, yes for some reason the sat nav always takes you there. You’re pretty close though. If you head south, take a right at the pub and straight over the next traffic lights, we’re about a hundred yards up on the right.”

“Okay, cool. I’ll see you shortly then.”

That’s basically me trying to find inner peace. You won’t find me in a remote temple, legs crossed, incense sticks burning as I try to become at one with psoriasis. I do think there is a great benefit though to find that happy place to improve your own well-being.

To find my happy place it has been a 14 year journey with psoriasis trying to drag me off course for most of that. How have I found my way there? Well it all started with a change in attitude from being negative about my condition to deciding I was going to live my life how I wanted. There is no point having this condition and at the same time letting it control you. Psoriasis may not want to go out, it may not want to eat certain foods and it may not want anyone around and to keep you all to itself. It’s not up to psoriasis what you do, it’s your life and it has decided to come along for the ride.

I have found this year especially that I am much more at peace with my skin. I have made just a few changes and some of it getting back to old ways. Moving last year has been key to the change and now we are settled in our new home everything is just so much easier.  We are closer to town so can pop in any time we like without the stress of driving and parking or deciding you doesn’t drink. We have a pub next door which has brought with it a great new group of friends so when you just need a chat there is always someone there.

I now have the kitchen/diner I have wanted for so long which has rejuvenated my love of cooking. That joy of cooking means using more fresh ingredients, experimenting and just immersing myself in my passion. I have always said, if you have a passion, fill your life with it. My kitchen is a psoriasis free zone.

I have made a change to treatment regime as well. The new positive me has meant making sure I keep more to a routine, I still take days off but again this is what helps me keep things under my control. I decide when I will slather creams on, whether to use a rich ointment or a light cream or just soak in the bath.

I started the year by having a dead sea salt bath nearly every night. At the same time I was alternating between Dovobet and Dovonex so as not to be using the steroid treatment every day. When I ran out of these I didn’t go back to the doctor, in fact I cancelled my consultant appointment. I was still angry from the last appointment six months prior. Instead I carried on with the salt baths and adding in Aveeno bath oil now and then.

The added enjoyment of the bath was putting episodes of Doctor Who on the tablet. I would lay back and watch one of my favourite programmes without my wife moaning that it was Doctor Who again and asking how many times I need to watch the same episode. She can watch her reality TV or soaps and I watch what I want. It lets me enjoy my treatment routine.

Obviously I wouldn’t stay in the bath during a whole episode so the remainder of the time was used for moisturising. I have now turned to Aveeno, mainly using the moisturising cream and sometimes the lighter lotion depending what I’m going to be wearing. I am becoming a bit of an Aveeno fan as I even have the hand cream and shower gel.

The result? Much clearer skin, barely any flaking and a lot less itching. I stopped using any prescribed medication nearly two months ago now and I feel and look better than I have for some time. This is my own personal journey to inner peace. Finding what works for me, only making slight changes that fit in with my life and mean I can still enjoy life. The happier me is a healthier me. I wouldn’t say I have found inner peace, the journey will continue and will only terminate once psoriasis has stopped sitting in the back seat of my car.

The thing is that at least now I know what I’m looking for and I’m heading in the right direction. I wish you all well on your journey and don’t forget that we are some of the most amazing people in the world, otherwise why would psoriasis want to be with us so much?

As a psoriasis patient you get used to psoriasis being fairly predictable. When it’s cold your skin gets sore. When it’s hot and you sweat your skin can go red and itchy and you feel uncomfortable. If you get stressed then your psoriasis can redden and many people experience a flare up. Our diet affects us. We all have certain foods that seem to cause a minor or major flare up and some find a diet that helps sooth.

Then there is being ill. We all know that as our immune system tries to fight something that isn’t there and we get ill, this puts a greater strain on us. Note, “something that isn’t there” refers to my immune system thinking my skin is under attack. I am not saying that psoriasis is not a real condition.  For some reason that makes our immune system work even harder so, yes you guessed it, our psoriasis worsens……. or does it?

I have recently suffered from a very bad cold or, as my wife called it, full on woman flu. Yes even worse than man flu. Now when I get a cold I get a flare up. I do honestly. Except that this time my psoriasis did not flare up. The low down sneaky little git of a disease decided not to get worse when I expected it to. I mean how dare it? Just when you think you know your psoriasis it goes and does something nice. What’s it playing at?

Also work has been busy. I work in accounts and having the auditors in for year end whilst also trying to do the month end makes things a little hectic. So with added pressure that should cause stress and worsen my psoriasis, still not a peep from it.

My skin isn’t clear right now, in fact I would say I’m about 20% covered right now. My psoriasis should have been raging over the last week. It should be red and sore and flaking everywhere. That is psoriasis for you. It never does what it should do. I am more and more sure it is a moody teenager, doing the exact opposite to what you expect.

It also makes me wonder if it has something up it’s sleeve. Is it planning something? Just as I think this is a good period, skin not too uncomfortable and actually looking better than it has done for weeks, is psoriasis going to jump out and exclaim “Ha haaaaaaaaa, fooled you” then attack.

Or has my psoriasis had enough? Has my cold caused my immune system to say “sod it, I’m too tired for this skin malarkey”? Maybe the cold has knackered it, so rather than being overactive it has as much energy as I did over the last week. Possibly, just possibly, psoriasis has decided to be nice to me for a change.

 

 

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