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Posts Tagged ‘Psoriasis’

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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It was Christmas Eve and the house was silent.

“SCRATCHITT.” Ebenezer Psoriasis’ voice boomed out in the darkness as Tom Scratchitt tried to sleep. He awoke with a start, his hand automatically drawn to his leg, nails digging in to his skin and drawing blood.

“Why make me do this now?” He asked Ebenezer Psoriasis.

“Because it’s fun to see you suffer” Ebenezer sneered. He chuckled to himself and promptly went back to sleep leaving a tired Tom Scratchitt to clean up the mess of flakes and blood now caked on his hand.

Tom went to the bathroom, ran his hands under some cool water and gently dabbed his bleeding leg with damp flannel. It offered some relief and Tom closed his eyes, thinking he could sleep right there. “Why won’t he leave me alone, why does he keep tormenting me?” he asked himself. He opened his eyes, looked in the mirror and saw a face looking back that he barely recognised. A once confident face looking drawn and haggard and a noticeable lack of life in his eyes.

It wasn’t the best of night’s sleep for Ebenezer either though. He felt a presence, something else was in the room. “Ebenezer Psoriasis” a ghostly voice called. He looked around, saw nothing and closed his eyes again. “Ebenezer Psoriasis” the voice said louder “You are a wicked man Ebenezer”. This time he sat up and turned on the bedside light. A shape appeared in front of him.

“Who are you, what do you want?” He asked squinting as he tried to focus on the hazy floating vision.

“Who I am is no important, my reason for being here is” it said with a strange whispering voice. “You are being watched Ebenezer, your evil acts cannot continue”.

“Bah, Humbug” said Ebenezer. “I like being bad, it’s fun” he sniggered.

“Be warned Ebenezer, you will be visited by three ghosts to show you the error of your ways”.

“I’d rather not thanks” replied Ebenezer, “Unless they like scratching too?” He chuckled to himself.

The ghost eyed Ebenezer closely, well if it had eyes it would have done. It was more of just a mist than a person. “This is going to be a toughie” I thought to itself, “Oh well the others can deal with that bit”.

The ghost flew around the room “Three ghosts Ebenezer, the first will come at….”

“Midnight, the second at one and the third at two, yeah yeah I’ve read Christmas Carol” Ebenezer interrupted and then told the ghost to shove off. With that the ghost huffed, shrugged his shoulders and as he went to speak, thought better of it and with a small puff of smoke it disappeared.

Midnight arrived. No chiming of the clock, I mean this is the digital age after all. Ebenezer Psoriasis slept soundly, unlike Tom Scratchitt who tossed and turned, subconsciously scratching his skin. Tom’s smartphone suddenly lit up and then stood on the bedside table. Tom couldn’t see this but Ebenezer raised one eyebrow and looked at the phone curiously.

“Ebenezerrrrrrrrrrrrrrrr Psoriasissssssssssssssssssss” the phone whispered.

“What is it with you ghosts, can’t you just talk normally, I was expecting you so you don’t have to act all mysterious?” he snarled.

“Oh, erm, sorry” the phone said rather taken aback “We are told to speak like that in spirit school.” It continued. “Well, erm….” The spirit paused, finding it difficult to get back on track. It switched on it’s notes app. “Ah yes, shall we go back in time then to a Christmas past”.

“Whatever” Ebenezr said with a shrug of his shoulders and with that the room filled with light so bright Ebenezer couldn’t see anything but whiteness. As the light faded he found himself in a lounge of a house and there on the floor playing with his new Christmas toys was a young Tom Scratchitt. The boy made car sounds as he raced a toy car round the carpet by the Christmas tree.

“Who’s this then?” Ebenezer asked.

“What that is young Tom Scratchitt, long before you came into his life. See how happy and carefree he is. See how lovely his skin looks.”

“Hmmmmm, yes I do see, oh if only he knew the misery that is to come.” Ebenezer let out an evil laugh and rubbed his hands with glee. “Yes boy, you just wait, I’ll stop that smile on your face.” He chortled.

“Yes, look” the spirit said “See how happy, does it not fill you with remorse to know how unhappy you have made this once happy child?” It asked pleadingly.

“No not really…. Well apart from thinking I could have given him a few more years misery.” Ebenezer sneered. “Yes, maybe I should have found him in his late teens. Oh well, nothing I can do about that now.”

The spirit went silent, there is nothing in his online guide app about this. “Cortana, what do I do with an unrepentant soul?” It asked. Cortana’s ring span for what seemed like an age before answering.

“Sorry, I do not understand the question.” Cortana said.

“Right, I’ve seen enough, this is making me feel sick seeing all this happiness, I’m off back to bed.” Ebenezer turned and picked up the phone and licked the off switch. The screen faded to black and Ebenezer found himself back in bed with the still restless Tom Scratchitt.

1 a.m. arrived and in the next room a light glowed. “Oh joy, the ghost of Christmas present has arrived, let’s see what this one can do.” Ebenezer chuckled to himself. He ran into the room “I’m in to know you better man.” He boomed.

“C…… Oh, you know that bit” said a large tub of emollient.

“Really? Emollient?” Queried Ebnezer. “Could you not think of anything else, it’s not like that stuff even bothers me.”

“Well it had to be something you’d relate to and this is the UK so I can’t appear as a prescription product, you know we have laws about that kind of thing.” The tub replied.

“You should try living by your own rules, that’s what I do” Smiled Ebenezer. “One day I’ll be all nice and calm, even start to fade and for no reason I’ll come running back and jumping all over my victim the next day. Oh they’ll try to find a pattern, try to figure out what caused it. That’s part of the fun, they’ll never get it.”

“Really, you have no rules?” the Tub asked. “I get so bored of rules, I mean look at this paperwork the put in every carton and that’s just in this form. Don’t get me started on the spirit guide book… You shall Boom every word, makes bells jangle and lights flicker to get attention. I mean, what ever happened to just talking to someone to make them understand?”

Ebenezer walked over to the tub and put an arm round it “I hear you man, you need to pull away from the rulebook, be your own… erm… Spirit, as it were. You go tell them you are a free spirit and not to boss you around anymore.” Ebenezer said comfortingly and wondered how many more spirit puns he could find.

The tub lifted it’s head, well what resembled it’s head in its current form and proclaimed “Yes, thank you, I shall do just that, I’ll show ‘em.” And with that he was gone. Ebenezer chuckled to himself and wandered back to bed giving Tom Scratchitt a nudge just to make sure he wasn’t sleeping.

2 a.m. and the bed covers flew from atop the bed in a gush of wind and a blaze of lightning flashes. “Well that’s a bit more like it” said Ebenezer looking up at a dark apparition. “And I see you’ve gone for the classic look, I do like a bit of retro.”

The dark hooded figure raised one hand and pointed a finger at Ebenezer Psoriasis then curled it, beckoning him closer. Ebenezer got onto his knees and knelt in front of the sprit. “Dear Spirit, I know what you have come for. You have come to show me how bad life will be for Tom Scratchitt if I do not mend my ways. Dear spirit, I understand, I can see what misery I cause and I will make amends.”

The Spirit lifted its head and would have said “Huh?” in a surprised way if was able to speak. “I’ve only just got here and he’s already repenting” it thought to itself. “Yet the other spirits told me this wasn’t going well. Must be the good old hooded look.” The spirit straightened its back and stood proudly in front of Ebenezer, although little unsure what to do.

It held out a skeletal hand to Ebenezer as it thought it should at least go through the motions of showing him the Christmas yet to come. Ebenzer still knelt, looked up. “There is no need to take me on a journey Spirit. To prove to you I have changed I have something for you.”

The spirit was almost doing a jig inside his long dark robe. He thought he would at least give Ebenezer the chance to prove it and waited to see what he was to be given. Ebenezer took hold of the spirit’s bony hand and said “Happy i Christmas” with a smile that looked more evil than sincere but the spirit thought nothing of it as he knew Ebenzer probably hadn’t smiled genuinely for some time and would soon learn how to give a warm smile. The sprit looked down at his hand and saw skin start to form on its skeleton. The skin grew all over his body quickly and he could scarcely believe it. This was indeed a gift to no longer be shunned by his fellow spirits as they often cowered from his menacing look.

He nodded in appreciation towards Ebenezer and saw that Ebenezer was laughing. No, not laughing, he was sniggering and rubbing his hands. The spirit looked at his hands again, then rolled up his sleeves. The skin was still growing, growing so fast it was instantly peeling as more skin grew. The skin became cracked and started to weep. The spirit scratched at it as the itching started. It shook a fist at Ebenezer who just stood there laughing “Yes, a very merry itching Christmas” he sneered.

The spirit spun around the room, the itching was so intense it couldn’t think of anything else. It had thought it was being given the gift of skin and now saw Ebenezer for what he truly was. In despair it curled up and with a loud bang, a flash of light and a huge cloud of smoke it disappeared. “My work here is done” Ebenezer said to himself and got back into bed “Scratchitttttttttttttttttttttttttt.” He shouted one more time. Tom Scratchitt woke with a start, tired eyes looked round the room. His skin sore, his nails red with blood. He once again raised from the bed and headed to the bathroom. Ebenezer Psoriasis smiled as he slept peacefully. The End        

That is my Christmas story. Not a happy ending but I don’t think Psoriasis, if it were a person, would care about people’s welfare. Whether or not we find a cure for this condition or if you find a way to control it. Psoriasis itself remains the same, it will never stop trying to make our lives miserable so no spirits of Christmas can help it change its ways.

This Christmas spare a thought for those who suffer from chronic illnesses, not just psoriasis. There are millions of people around the world who need a little extra care and sometimes just to know you’re there. Give them your support, your understanding and be willing to listen. If you are Father Christmas and reading this though, a cure would be nice.

Happy Christmas one and all and I wish you an itch free New Year.

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Your skin in 500 Words

If you were asked to write about your skin condition in 500 words could and would you? It is something I am going to attempt to do for a project called “Skin So Many Words.” This is a project I have been invited to take part in by Natalie from Skin Community UK. Here are a few words from Natalie:

Myself and Michael Willcocks recently launched a project called ‘Skin So Many Words’ which is aimed at educating and raising awareness about skin conditions which, as you know, gets very little coverage. The idea is to produce a book/ebook of stories/essays by those with skin conditions such as Psoriasis. The idea is based on the successful story writing competition launched by Chris Evans called BBC 500 words which has been a great success every year. 

Natalie has Vitiligo, a condition where white patches form on the skin. Whilst this is not the same as psoriasis, both Natalie and I agree that skin conditions share many of the same symptoms especially where mental health is concerned. I have friends with eczema and often find talking to them about our daily lives it is very often similar.

“Skin So Many Words” will bring together all skin conditions which I believe will show just how similar our experiences are and bring us together as a wider skin community (to steal Natalie and Michael’s term). The book will be free and this does mean that all stories need to be donated for free. All authors will be credited for their work.

So if you would like to know more please visit Skin Community and start thinking on what your piece could be. You can write anything you like as long as it is within 500 words so be that a poem a short story, a vent of frustration. Be as honest and real as you like or let your imagination run wild.

Please do not send your stories to me though, I am helping to promote the project only so please contact Natalie and Michael through their website or email them at workmdw@yahoo.co.uk. Also look out for the next post on here which will be a guest blog from Natalie.

They are also on Twitter @Schooldermtime

 

 

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