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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).

 

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.

 

 

 

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. King 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 sore”  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!

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