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Ask the nutritionist

Some of you may know I also work on the Leo Pharma blog QualityCare™ where I talk about all things food and psoriasis related. Soon I will be putting some questions to nutritionist Kyla Williams. Kyla has kindly agreed to answer not just my questions but yours too. We would love it if you could send your questions to me and I will pass them on to Kyla.

Please be aware that there is a word limit so not all your questions may be answered. The questions and answers will be posted on the QualityCare™ blog and I will be sure to put a link to them here. So if there is a burning question you have about psoriasis and nutrition now is your chance to ask.

Please email myskinandi@outlook.com or ask in the comments section on this post. You can always tweet me your question on Twitter @Simonlovesfood. Please mention if you mind your name, first name only or initials used or to remain anonymous.

For more information about Kyla, please visit Kyla Williams Nutrition. You can follow Kyla on Twitter as well @KWNutrition

 

 

 

 

On the now forgotten island of Essex, just off the coast of Ancient Greece. Now a pile of rubble at the bottom of the sea it was once a hub of invention and trade. Kind Simonis ruled over the island with a firm but fair hand. That was until his people were hit with a curse from the god Psoriasis.

Psoriasis was a little known god. There were no shrine or altars in his honour unlike his fellow Gods. “I am the god of skin” he roared atop mount Olympus. The other gods would laugh at his complaints that no one worshipped him.

“I feed them with fish from the sea and give them safe passage to the mainland” Neptune would say “Why should they worship you?”

Psoriasis would slouch and grumble to himself as the other gods mocked him. “I give our people beauty, they are the most beautiful people in the world” he heard Aphrodite boast “They love me and I love them, who would love Psoriasis” she laughed.

“I give them beauty too” Psoriasis thought to himself, “Hmmmmmmmmmm, that gives me an idea, I will show the People of Essex”.

King Simonis lay in his bed sleeping. It was not an easy sleep. He tossed and turn while voices spoke to him in his head. “Do you think you’re handsome? Ha, You will not be much longer” the voices said. He jumped out of bed, his skin crawling, itching madly. He scratched at his skin drawing blood.

“What curse is this?” he cried as he saw his reflection in a mirror. The face of the god Psoriasis appeared.

“This is my curse on you and your people, I will make you pay for not worshipping me, for not showing your respect”

His face slowly faded and Simonis was stood peering at his reflection. His wife appeared by his side, also hit by this curse then they heard the cries. The whole palace had woken to find their skin flaking and scarred. “Call for Jason” the Kind commanded and a dove was sent to the mainland for Jason and his Argonauts.

The next morning King Simonis sent Jason and his Argonauts on a mission to find a cure to this curse. Aphrodite had appeared in a vision and told Simonis of a land far away, there was an ancient relic that would cure them. The journey would be dangerous and Jason was known to be the bravest man in all Greece. An old friend of King Simonis, he would undertake this journey.

Their ship set sail as the people of Essex cheered them from the dock wishing good luck and a safe quick return. Jason consulted his map and the stars to find the remote island that Aphrodite had told them of. Psoriasis looked on from the heavens “Ere, Neptune, how about releasing one of your monsters, you know give them a challenge” he asked.

“Get stuffed” replied Neptune, “Big Brother’s on”.

So the journey to the island was pretty unadventurous. In fact the Argonauts got a bit bored and when they finally hit land they had a quick game of footie before making their way to a nearby temple. There they met an old man with grey hair, a long beard which he stroked in deep thought until they realised he had nits in his beard. “Old man, wise sage, can you help our people, they have the curse of Psoriasis” Jason said whilst keeping his distance somewhat.

“Ahhhhhhhhhhhhhhhhh Psoriasis” he exclaimed, “My cousin had that once, I gave her this cream, it cleared it in a few days.” He handed Jason a small pot. Jason studied it curiously.

“Erm, it’s a bit small isn’t it?” He held up the pot “It’s a whole Island of people we need to cure”.

The man opened a cupboard “I have much more, only £50 a pot, miracle cure it is.” He put on a straw hat and pulled down a sign saying “Honest John’s Psoriasis Cure” only the words cold saw had been crossed through and psoriasis written over them.

“We have no money, we were told of a relic” Jason said and with that the man shut his cupboard and ushered them out.

“No money, no cure” he said slamming the door of the temple in Jason’s face. Jason turned to his men, one of them looking at a map with a sign saying “You are here.”

“Jase mate, it says here there’s pharmacy just over the next ridge but it’s closed on Sundays.” Jason’s face fell for today was Sunday. He checked his wrist sun dial and studied the map again.

“Let’s try this place called the Super Market” he said pointing at a large building shown. “It’s only five minutes away and open late. We should be able to get something there, otherwise why would they call it Super?” he beamed. The men cheered as they set off.

“Hi ho, hi ho” one of the men started to sing.

“Oi, cut it out, wrong story” Jason glared back at him.

They reached the Super Market and it was a wondrous place. There in golden light with a sign above saying “Limited Edition, one of a kind available here only” was what Jason thought must be the relic that Aphrodite had spoken of. “Someone distract the guard” Jason commanded. Two of the lads started to fight and were escorted out. Jason seized the opportunity and grabbed the relic, sliding it inside his tunic, whistling innocently as he walked out.

They ran back to the boat and headed back to the Island of Essex happy that they had succeeded in their quest and would cure Kind Simonis and his people. The journey back was pretty much the same as the one there, nothing much happened despite Psoriasis splashing about a bit in the water while Neptune looked on shaking his head.

Back at the palace trumpets blazed as Jason and his Argonauts entered, carrying the relic on a large tray. “King Simonis, I bring you your cure” Jason shouted proudly, eyeing up one of the King’s concubines thinking he would be getting his reward soon.

King Simonins rose from his throne and looked at the relic. He picked it up and stared at it. “Jason, a golden fleece? Really? Do you know how itchy wool is?”

Okay, so I was going to take a break until at least the new year and technically I am. Even though I’ve not been writing on here I have been keeping an eye on the site and seeing the views and receiving some lovely comments. Thank you to all of you who sent messages of support and understanding for my need to take a break. Funnily enough that soon after deciding to take a break I was filled with lots of ideas that I could write about. I guess taking out the stress released the writers block.

The year has seen me and my wife move into a new home which we quickly made our own. The pre-moving part was pretty stressful and the stress didn’t end there. My psoriasis seems to have decided to move in with us and spread itself about so that will be another trip back to the doctor in the new year. On the upside though, we have a cordless vacuum cleaner which I have found very handy for those flaking moments. It may sound strange but it has made me feel a lot more comfortable as I don’t feel so guilty flaking over the carpet or sofa now knowing I can quickly grab it and tidy up.

I now have a kitchen where I have room to create and we can entertain friends and family. This helps reduce the stress levels as psoriasis takes a back seat in my head while I concentrate on getting dinner just right. As you may have guess we’ll be having Christmas dinner in our new home with some of the family. Even with my skin getting increasingly covered I am looking forward to this Christmas, it will be relaxed and fun and I have some great ideas for dinner.  WP_20150912_003

The winter isn’t too bitter yet so I haven’t been too sore and that thought of it getting colder does sit over me like a dark could sometimes. My joints have already noticed the slightly colder weather and I have more aches and pains than I have for a few years. The thing is this year, it really isn’t bothering me. Christmas is coming and as well as wishing good tidings to all I wish it to my psoriasis and arthritis. Just because they show me no good will, doesn’t mean I should do the same. After all, I don’t want to end up being like Ebeneezer Scrooge. Now that’s given me a thought….. maybe Psoriasis needs a visit from the ghosts of Christmas past, present and yet to come.

I have said before that I should be thankful to my psoriasis. It is true that it has introduced me to a lot of amazing people. People who have psoriasis in common, whether that be because they have it, treat it, research, support us, make the treatments or help raise awareness. Some of these people have become good friends and without psoriasis it is very unlikely our paths would ever have crossed. There is one other thing I can thank psoriasis for, especially with my skin as it is now, Psoriasis guarantees me a white Christmas.

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So to you all, I wish you Merry Christmas and if you don’t celebrate Christmas then I wish the best of health today and always.

Merry Christmas & a Happy New Year from Simon, Michala and Bob the cat.

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Where do we go from here?

It is strange writing a blog about psoriasis. It is something I would rather not have as part of my life. It is difficult to say exactly how much I detest the disease. Yes, detest, that’s a good word for how I feel about psoriasis. I have not had you in my life as long as others yet it is still far too long that we have been together. I want rid of you, hang on, is it possible to divorce psoriasis? Well it’s got to be worth a try as nothing else seems to work fully.

So I write about you fairly regularly. As I try to get you out of my life I seem to let you in more and more by making you the centre of much of what I do. The thing is now it’s starting to irritate me. As much as I push you away I’m clawing you back into my mind to tell the world just how much I hate you. It doesn’t really make much sense does it?

I can sugar coat our relationship with “It’s to help others” and “raising awareness”. The truth is I don’t think it is doing me any good to have you as such a big part of my life. If I continue this way, even if I became clear of you physically you would still be there. Still in my head as I continue to talk about you. Imagine if you met someone and all they did was talk about their ex. That’s a little how I feel we would end up.

Something has to give and this has been playing on my mind a lot this year, really since I last had clear skin. The blog might have to end. I might have to stop talking. I mean, I’m not even sure what else I have to say on the subject. All I seem to do is repeat myself and I do question whether anyone is truly listening.

I want to be positive and upbeat. I don’t want to mope around anymore and dwelling on the fears and insecurities that you have brought me only add to the suffering. If you won’t leave me physically psoriasis then you will have to leave me in other ways. Maybe we should “consciously uncouple”. We at least need to stop talking, maybe then you’ll get the hint that I don’t want you around.

Like many couples I have decided to take a break from psoriasis. We can be like Rachel and Ross, except if you see someone else I really won’t care. I will feel sorry for that person more than I will care about you seeing them. I will still be working on some projects so I am sure we’ll bump into each other now and then. For now it’s goodbye.

I hope you all understand that I just need a break. I often feel pressured into writing and it’s not the healthiest state for me to be in. Having recently moved I am engrossed in cooking in my new kitchen and starting a new adventure with my Wife. This is much more important to me that psoriasis. I will still be fighting in the background and am sure I will return to the blog one day. Just in case it’s not this year, Happy Christmas!

Life’s An Itch

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Psoriasis itches. Is that stating the obvious? It will be to anyone with psoriasis and I would imagine anyone who has ever had a dry skin condition would have probably assumed that psoriasis itches. If you’ve had sunburn so it peels you can probably relate to it also. So why am I telling you that it itches? Surprisingly, many dermatology professionals do not think that psoriasis itches or think that itch is not as bothersome as patients say it is. Excuse me? I have the itch, I think I know exactly how bothersome it can be. I am the one after all who has had countless sleepless nights due to itching. I am the one who has scratched myself until I bleed because the itching just won’t stop.

I do find this kind of funny though as I have posted before about the definition of psoriasis. The word psoriasis comes from the Greek word psōra, meaning “itch”. So the name given to the condition basically means itch. Why would a condition named after itch not be itchy?

This is only one part of having psoriasis. It is for many though the most irritating and misunderstood part. So a campaign has been launched to raise awareness of how itch affects people’s lives and what itch means. Life’s An Itch is a joint project by The Psoriasis Association and Celgene and fully back by The British Dermatological Nursing Group. It started a while back with a meeting of healthcare professionals and bloggers of which I was lucky enough to be part of. We were asked to submit words to describe what “Itch” means to us and the results produced this brilliant artwork. 210715 Final imageYou can add your words and help the campaign grow. Just visit the Life’s an Itch website and submit your words. It is completely anonymous and more artwork will be created from how we all feel about itch. You can also take a look at the word cloud to see what others have said. As it is anonymous I won’t reveal which words I submitted.

If you don’t have psoriasis, please take a look and maybe it will help you understand a little more of what psoriasis patients go through every single day.

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?

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