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Posts Tagged ‘Psoriasis’

Hello all. We’re already half way through October and thoughts turn to dark nights snuggling up on the sofa, bonfires, fireworks and all things spooky as Halloween approaches. Now I’m English and Halloween is one of those holidays I haven’t always agreed with. Firstly it’s a made up thing, I don’t like people knocking on my door at the best of times so dressed up as spooks in the dark asking for treats and threatening to do something if I don’t is why I’m usually just out for the night. However,  I do like a party, well I do these days. Obviously there were times when I wouldn’t leave the house for fear of people recoiling at my skin but it’s Halloween and I have the perfect skin for that.

My skin has been improving but with the changeable weather, a busy life and a cold it has recently flared a little. Not too much but it’s back to itchy, flaky and some cracking so I make the perfect undead. So whilst all your friends go hunting for outfits we can all sit here quite content knowing we have a ready made costume and the best thing is, people will think it’s very realistic make up. If you’re worried about reactions to your skin and still not confident about showing it off, Halloween is your perfect opportunity. Mind you, I bet if there’s a competition for best costume we’d get disqualified thinking our “make-up” was done professionally.

This is just a bit of fun and just wanted to show that even with flaky dry skin we can still make something positive out of it and have a laugh. Believe me, I have been one to moan about this condition a lot so when I get a chance to use it to my advantage I will. So get out there, spook your neighbours and have a boogie to the Monster Mash.

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Psoriasis, what is it good for? Go on, song “absolutely nothing”, you know you want to. So often I find inspiration from music in dealing and talking about Psoriasis. I’m not always sure where it comes from, I can be sat having a cup of coffee as I am now and just say the word Psoriasis. Then something, often obscure, pops into my head which then leads to a post like this.

I actually think this is a good question. What is Psoriasis good for? I guess most people would say nothing as it is hard to often find a positive thing to say about Psoriasis.

Well luckily for you I am here to tell you what it’s good for. Firstly it gives thousands of people a job. Okay I’m sure we’d rather not have this condition but think of the nursing staff, doctors, scientists, pharma employees and vacuum cleaner makers that would be out of work. Yeah that last one is because we are the reason for powerful vacuum cleaners, forget pet hair, honestly my dyson gets used much more for cleaning up my skin. You may noticed I conveniently ignored the millions and possibly billions spent on treating Psoriasis and time lost in doctor’s appointments and depressions, I am desperately trying to find the positives here.

So what else is it good for? Well for many of us it has shown what we’re made of. Whether you have found this condition takes you to the brink of suicide or maybe not so far, if you’ve made it back to being yourself, to leading as normal a life as you can or totally turning your life around and found life is even better than before then ask yourself this, would you be there without the challenge of living with psoriasis? There are things I have done that if it was not for psoriasis I never would have done. I would not be writing this blog for a start and you wouldn’t be reading it because there would be no “My Skin and I” to read and you’d never have got my random thoughts about Psoriasis and the X-Men. So if  you’re reading this (okay you may wish you weren’t) and if you find it slightly amusing or even informative then that is thanks to Psoriasis.

I know it’s annoying isn’t it, having to thank Psoriasis for anything. Well I do, I have friends because of Psoriasis, I have been into Parliament, I have spoken in front of healthcare professionals, I have written part of a book, had photo shoots, all in the name of Psoriasis. So what is Psoriasis good for? It’s good for making me the person I am today but if it asks me personally then the answer is “absolutely nothing” don’t want it getting all smug. Could you imagine Psoriasis being smug as well?

Stay strong, keep the treatment up and keep walking toward that light at the end of the tunnel everyone.

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It has long been recognised that psoriasis is a complex skin disease that has psychological associations as well as physical ones. It’s thought that stress can play a role in the flare-up of symptoms, and many sufferers can often trace their first outbreak back to a stressful event or period in their life.

With this in mind, the role of stress reduction has become an important part of psoriasis treatment. Stress releases a hormone called cortisol in the body, which can cause inflammation. In psoriasis, symptoms are triggered by an inflammatory response in the body, so it’s not hard to see how the two go hand in hand.

One approach that has been gaining traction in recent times, alongside conventional psoriasis treatment, is the use of cognitive behavioural therapy, or CBT.

CBT is one of many so-called ‘talking’ therapies, and its aim is to change negative thought patterns in patients. By altering the way that you think or behave, it can help you to better manage your problems or health condition (http://www.nhs.uk/conditions/cognitive-behavioural-therapy/Pages/Introduction.aspx).

CBT is most often used to treat anxiety or depression, but a number of studies have recently been carried out to see what effects it may have on treating skin diseases that have a psychological interaction, such as psoriasis. The results, so far, have proved quite enlightening.

Researchers have discovered that treatments such as CBT can prove beneficial in many ways, improving the quality of life of sufferers and reducing the severity of symptoms (http://psoriasisnewstoday.com/2016/06/14/efficacy-of-biofeedback-and-cognitive-behavioural-therapy-in-psoriatic-patientsa-single-blind-randomized-and-controlled-study-with-added-narrow-band-ultraviolet-b-therapy/).

Studies have found that CBT can help to ease the anxiety or depression that many sufferers of this skin disease experience. In fact, it’s thought that a third of people with psoriasis report feelings of anxiety or depression (https://www.ncbi.nlm.nih.gov/books/NBK327714/).

Research has also indicated that CBT can help to retrain the brain to think differently about this skin disease and can even improve physical symptoms. It can also help to reverse the bad habits associated with the disease, such as changing behaviour to reduce scratching and itching. Other relaxation techniques and meditation have also been shown to help ease symptoms, although not to the same extent as CBT (http://www.telegraph.co.uk/news/health/news/9499471/Skin-disease-hope-through-psychotherapy.html).

CBT and other talking or relaxation therapies are certainly beginning to gain recognition in their role managing symptoms of skin diseases such as psoriasis. With further research, it could be that sufferers rely more and more on these treatments as much as conventional methods.

 

This guest article has been written by Tania Godoy from HelloSkin.

 

 

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The week of 8th to 14th May is Mental Health Awareness week and there has been a lot of press about mental health lately. With our own Royal Family speaking out it seemed to once again bring mental health to the forefront. It is also apparent there is still a lot of stigma attached to mental health. I also read a comment from a well know journalist and presenter saying that men should just “man up”.

For me, my mental health issues have come about from the years I have spent with psoriasis. I often relate this to torture, it is that painful and difficult to live with. If you try to imagine what it would be like if you were woken up regularly, had itching powder put in your sheets, you skin made sore then purposely have something poured over it to make it sting, it will give you just a idea of what it can be like in the day of a psoriasis patient. Now think of that happening every day. Do you think your mental health may suffer just a little?

That’s just the surface of psoriasis, there’s a much deeper issue. Anxiety creeps in as you look in the mirror and see your face, the flakes from your scalp on your shoulders, you wonder what others think when they see you and that’s before even venturing outside and seeing people’s reactions. Feeling you are ugly or unsightly without anyone saying anything is your head playing tricks with you. Those feelings can grow though and when you’re tired from an extreme lack of sleep and having to fight this condition every day, those thoughts can easily take over.

I have been there, right to the very edge of despair and my skin and blood caked fingers somehow dragged me back. I am better, not fully recovered and every morning can bring a worry of “how will I feel today?”. Every single day is still a fight, some days are just easier than others. I find ways to cope, ways to release my feelings so I no longer bottle it all up. I find a way to live my life and enjoy as much of it as I can. So even if you see me smiling, it doesn’t necessarily mean I’m well. It could mean I’m just hiding.

Back the Mental Health Awareness week. For this I have linked back to a couple of blog posts from the past. One is about what started the fight, how close I was to ending it all, that was a Dark Night. The other is not quite as dark yet still highlights the mental health issues experienced, Faulty Switch.

Now begs the question how am I still going? Well that is much easier to answer. It is due to support from my family, friends and a GP who has somehow stopped me being diagnosed with depression. Of course there is my Cat, Bob who know just when I need a nose bump. With a love of food and cooking I have something I can escape to and focus on creating the perfect dish rather than over think how I’m feeling. That escape, even for a few minutes, can give me the strength to carry on fighting.

 

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Psoriasis, the pain in the backside, the bane of my life. The physical side of it makes it difficult enough to cope with, the itching, flaking, sore and stinging skin which makes you uncomfortable and lose sleep. There’s the treatment too, often creamy or oily emollients which then stain clothes, feel uncomfortable wearing clothes over them. There are some better products out there but still not enough and most of the ones that are light enough to use under clothing only last about five minutes with psoriasis.

On top of all this there is the mental health issues that decide to come along for the ride. The thoughts in your head such as “I look awful”, “how can anyone like me?”, “I just want to hide”, “I don’t want to live with this anymore”. The now common phrase is that Psoriasis is more than skin deep and how true that is. It attacks every fibre of your being. Your body, your mind, your soul. It seeps into your brain and when you’ve had enough you can start to find yourself making like a snail and retreating into your shell for comfort. The only thing is, that shell is possibly the most dangerous place to be.

In my shell I am alone. It’s dark and gloomy and the world looks like it’s coming to an end. I still go there though when times are tough. Like I’m punishing myself for having this disease. It’s also where I start to think too much about it. I mull over all those disappointing consultations where the doctors have treated me as a number or as if I’m actually getting in the way of something more important. I think of how long I have lived with this condition and then feel guilty that others have had it longer and are not moaning as much as me.

Oh the guilt, that really hits you hard. Feeling guilty that I feel like I have the worst illness known to man whilst others are battling terminal illnesses, families are watching loved ones struggle for life or dealing with grief after losing them to other illnesses. What gives me the right to be unhappy with my life? I’m alive aren’t I?

And the thoughts go on. Especially recently as I’ve had a bit of extended time to myself. Have a break, it’s good for the soul, relax, rest up. That is another difficult one. I take time out and sit back, put my feet up and an itch comes along. I can’t rest, I can’t relax, I can only fidget and scratch and the thoughts that come along are dark and depressing. There is no let up from Psoriasis, it is constantly there, waiting for the perfect moment to strike. I truly believe Psoriasis hates me.

Gone are the positive thoughts I had after my last clearance. Gone is the positivity a couple of years ago when I said “No more”. With me now are thoughts of “Did I just say that to hide that I can’t cope?”, “Was I just pretending I was positive or was I really just ignoring what was going on?”.

As I sit and think I wonder what is now the truth and what part of me is lying. Have I always been positive and been wallowing in self pity, using this illness as an excuse not to do things. Or have I always been struggling and lying to myself that I can fight, that I will win, that I am happy. It becomes blurry. The two sides of me fight each other and I am stuck in the middle thinking. Thinking about psoriasis, thinking about what I think about psoriasis, thinking if what I think is what I know or just what I think. Or am I just overthinking?

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Some time ago I wrote a piece about “Who Am I with Psoriasis” which was inspired by a certain Hugh Jackman as both Jean Valjean and Wolverine. Now I find myself going back to this as I fantasise about psoriasis a little more rather than deal with the real life side of it. I am sort of coping with keeping my psoriasis at a certain level, an ongoing battle to ensure it doesn’t worsen and at the same time reminding myself I must book up to see the doctor again.

I do like to remove psoriasis from the real world though and some would say that means I’m not facing up to it and ignoring it won’t make it go away. To me it is a coping mechanism. To not take it so seriously and to even laugh at psoriasis helps me get through the tougher days. I have written a couple of short stories in the past and as I sit here waiting to go into town and see the new X-Men film, Logan, my mind imagines what it would be like as one of the X-Men. Some do say that psoriasis is caused by a mutated gene after all so Psoriasis is my special power……..

 

Professor X, Storm, Jean and Cyclops are in the Professor’s study. They are talking to a man hunched up in a char, his clothes, loose fitting, a baseball cap and hooded top attempting to cover his face. Storm eyes him over noticing every time someone looks at him he covers pulls the sleeves of his top over his hands, like he is trying to hide, trying not to be seen. The large wooden door to the study opens, all but the stranger look up as Logan walks in.

“Ah Logan, come in” says Charles Xavier and waves his hand ushering him in “And please shut the door”.

Logan walks in, looks round and immediately focuses on the man huddled in one of the leather chairs. “I’d like you to meet Simon, he’s just joined us he at the school.” Logan walks over and stands in front of the man.

“Hey, how you doing? I’m Logan.” He holds out his hand but the man only barley looks up, trying again to hide his hands and face. Logan huffs and steps back “So what’s his problem?” he asks turning to the Professor.

“He’s rather shy” replies Charles. “It’s okay you’re among friends here, we are all different, you can relax” he continues trying to coax the new arrival to look up. Slowly his hands rise, red scaled hands reach up to his cap and pull it off along with the hood. Drawn sunken eyes look at the team of X-Men stood in front of him. Each one stands there staring at the man trying not to react but the man can see it in there eyes. Not a look of horror but of pity as they see the blotches on his face, skin falling off.

“So what’s your power?” Logan asks breaking the silence. Simon looks up at him, eyeing Logan cautiously.

“I grow skin too quick” he says. Simon’s hand moves to his neck, scratching it and a flurry of silver scales drop to the floor. “I’m sorry, damn, I’ll clean that up” he says and goes to get up.

“Don’t worry about it, we’ve cleared up bigger messes here” Storm smiles and reaches out holding Simon’s shoulder. He looks at her hand and sees how smooth and healthy her skin is, the firs time he can remember someone has touched him without hesitation or recoiling. He relaxes, maybe he has finally found somewhere he can feel at home.

Logan goes to light a cigar, the professor coughs. Logan rises an eyebrow at the professor and puts the cigar back in his pocket. “So bud, let’s see what you can do.”

Simon looks up, “I….. I don’t know if I should, people don’t like it.” He turns away again, the Professor looks into Simon’s mind and can see the constant turmoil, changing from confident to shy in seconds.

“Let’s go to the training room” says the Professor and the team show Simon the way. Simon looks at the suits displayed along the corridor, wondering what it would be like to be an X-Man.

“Show us what you can do and we’ll give you one of those fancy suits” says Logan walking beside him. “I used to think I was alone, never wanted to talk to anyone or be part of anything. Don’t tell the others but they are the best thing that ever happened to me, you’re in a good place.” Hearing Logan say how he has changed since meeting Charles Xavier and his X-Men starts to sink in, his back straightens and his head seems to be held a little higher.

Once in the training room Jean assures Simon he can do anything here, to let loose and reveal his powers. Simon stands in the centre of the room as the others watch on. He lowers his head, takes a deep breath and then looks up. His arms stretch out and silver scales shoot from his hands, swirling around the room almost like a dust storm. The others step back, they can barely see, it is as if the flakes have caused a wall. “That will certainly be good for cover and diversion” Cyclops exclaims.

The swirls subside and Simon stands there shaking a little, never having revealed his true power to anyone before. The Professor smiles “I think we have a new team member”. The others walk over to Simon and shake his hand, pat him on the back and welcome him. “So what are we going to call you, everyone has to have a nickname.” Wolverine says as he gives Simon a hearty slap on the back. “How about the flaker or scaleman?”

Simon is handed a new uniform by Storm and goes off to change as the other discuss what he should be called. The doors slide open and Simon walks in, standing tall and proud, a different man to the one who entered the school earlier. “No more hiding” he says. “No longer will I deny who I am. I am Psoriasis”.

And so PsiRiasis became one of the X-Men, no more a menacing shadow controlling Simon. He now had control and PsiRiasis became a superhero.

 

 

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Psoriasis in verse 

Psoriasis, it makes you scream

So you put on cream.

The relief it brings

Dares you to dream.
You feel it clear

Healthy skin is near

Another flare up

Is what you fear.

 

You wish it would,

You wish it could

be cured forever.

That would be so good.

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