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Leo Pharma Talk

I was recently invited to speak at Leo Pharma’s UK and Ireland conference to give a patient’s perspective of psoriasis. In case you don’t know who Leo are, many psoriasis patients will recognise two of their products in particular, Dovobet and Dovonex. I also had the pleasure of sharing the stage with the Flaky Fasionista. The theme of the conference was to ask why we do the things we do and the basis of my talk was four questions that Leo asked me about my blog which I have shared along with my answers below.

Why did I start the blog & other activities?

I didn’t talk to anyone about psoriasis, not how it affected me. Psoriasis is a very personal disease, it can make you feel ashamed and embarrassed and, being a little vain, I did not want anyone apart from my doctors to know how it made me feel. I didn’t want anyone worrying about me or knowing I couldn’t cope. I guess I felt I didn’t want my family thinking I was weak.

I wrote a piece on my the food blog I used to write with no intention to create a blog dedicated to psoriasis. Partly this was to just let it all out and partly for that year’s Psoriasis Awareness Week. Actually I only posted it publicly because of awareness week, it had previously been unpublished for about two months. The reaction to that first post was surprising. Many friends told me they had the same condition and had done the same as me, kept it private. I heard from other patients and it remained the most read piece on my food blog.

It was a few years later I decided to start a blog about psoriasis specifically. I can’t really remember exactly why. I remember I was going through another flare up and a particularly stressful time and thought that as well as getting it off my chest, it may help raise awareness. I had been speaking with the Psoriasis Association and other patients and thought there was a need to get the message out there, to show that this is more than a bit of dry skin.

I became more involved with the Psoriasis Association and felt that I wanted to contribute. I can’t offer a lot in the way of financial support so I help by getting the word out and supporting their cause.
My first post was very dark, something I had been wanting to tell my family about but had never had the courage. It was a post about the night I made the decision to fight psoriasis and not let it beat me. A night even now I struggle to tell people about. You can read this post here.

What keeps me doing it today?

First and foremost, my own mental wellbeing. I still do not talk to my friends and family a lot about the condition, well not how it really affects me. I find it easier to write my feelings down and let them read.
There is still a lot that needs to be done to improve patient care and it annoys me as to how patients are treated. There are some hospitals that give exceptional treatment. There are too many that do not, such as my local hospital that barely gives you a second thought, apart from the nurses.

The difference between the various healthcare professionals is something I am keen to point out. The nurses I have come into contact with are simply brilliant. They talk to you, empathise and understand that it’s not just a skin condition, there are mental issues that come with it. My GP is excellent, he does have a background in dermatology which helps and he is the reason I have never taken anti-depressants.

The consultants are much more hit and miss. There are the leading consultants who are paving the way for better treatment and pushing the campaigns then there are those who seem to just be taking their pay-check. I have seen numerous consultants, the same one only on two appointments and the information often varies. They do not agree on how long I should use steroid creams, some have not bothered to even look at my skin. Nearly always you are made to feel you are a hindrance and taking up their valuable time.

I also like to dispel some of the myths about psoriasis so it is a little bit about educating those without psoriasis. Things like it is not contagious and it not only stress related. Speaking of stress, it is not only when we can’t cope mentally, it is physical stress, when you’re ill and run-down, tired, your body is under physical stress. Personally I find physical stress causes flare ups more than mental stress. This fight for better treatment and my own personal fight against this condition also keeps me going.

Why did I feel inspired to reach out to others?

The original post on the food blog introduced me to the Psoriasis Community and one thing was clear. There was not a great deal of support, or people did not realise what support was out there. As a way of coping I wanted to help others find the support, mostly to stop them going to the dark place I had been.

No one understands psoriasis more than someone with psoriasis. My family and friends give me great support and will always admit they will never quite understand what I have gone through. It is not just to get together and a moan about psoriasis, which does happen, it is to learn from each other, how others cope, what have they found that works.

What keeps me helping others today?

I have not had the worst case of psoriasis ever and have met others who have had a much harder time of it than me. I do feel though that I have been to the edge of the despair and managed to claw back. I hope other patients will learn from my journey and experience.

I have remained very negative about psoriasis for many years, only changing this last year which almost resulted in me finishing the blog. I had clear skin, even though I knew it would come back, I had a new job which I love, things were on the up so what did I have to moan about? It was here I realised that I had turned the corner. I know my psoriasis will come back, it already has. This time though, I had seen that there was more to life than moaning about psoriasis and that my constant moaning can affect people around me.

So I thought it is best to continue and show people there is light at the end of the tunnel. You may not be able to get rid of this disease but you can learn to live with it. To show that you can continue to live your life and not allow psoriasis to live it for you. I always think we have two choices, fight or give up.
I don’t receive many comments on the blog, those that do get in touch help to keep me going. It is always nice to know that you are helping others whether that be to give other patients hope or to educate those who don’t have the condition.

The last thing I would say that keeps me going is a sense of purpose. I became lost with this condition. For years I kept asking why me? Contributing to awareness campaigns, supporting psoriasis charities and working with pharmaceutical companies to improve patient care, just possibly this is why I have psoriasis.

The Flare Up

Right, how do I stop this sounding like I’m moaning? This week has been tough. The year has been okay so far apart from being on my second cold with a chest infection in between the two colds. Work has been busy, a little stressful maybe. The stress of work is lightened by the fact I work with a great bunch of people.

The slightly ill health (would say man flu but I only had one day off) is probably the cause of my latest flare up. My skin has been sore, burning, dry, basically a pain in the bum. The flare up is always something a psoriasis patient fears. How sever will it be? How long will it last? Will it be worse than the last one? All the questions that go through your mind then there’s the sleepless nights, feeling tired at work. Actually feeling so tired and irritable that I told my colleagues to hit me if I became snappy.

So how do you deal with a flare up? Well in my case I spent three days not doing anything to my skin. No ointments, no moisturiser. I have found that the first couple of days seem to have no effect whether I treat myself or not. A flare up means sore cracking skin, you try putting any kind of topical treatment on that and you’ll know why I just don’t bother.

It is something I do often as I find that if I let my skin build up a bit, the treatment it more effective. Obviously this isn’t something I do every week or even every month, maybe a few times a year though. The funny thing is that as my skin clears up it can often feel really sore so I almost need that extra few layers of skin.

So this latest flare up has been painful, sore and a few years back I would be throwing things around the kitchen, shouting and screaming. This flare up I have stepped back, decided what I need to do and after a few days off from treatment I have gone into intensive mode. A few bad days and nights are worth a week or two of sleep and clearish skin. Also I do weirdly like when I suddenly up the treatment again and get big patches of skin peeling off. If you’ve had sun burn and felt the relief of your skin peeling off you will know exactly what I mean here.

The other thing I have done is continued to live my life. The other night I sat down, my legs were screaming at me and I told psoriasis to get knotted. I went to the fridge and grabbed a beer and relaxed. I am not saying you should all go out there and start drinking, just live your life. No matter what psoriasis throws at you, stay in control. Otherwise psoriasis will control you.

Are you Listening?

I was chatting with a friend recently about psoriasis and something came up about talking to people about the condition. They asked me what was the thing I find most annoying when talking about psoriasis and I replied “when people ask about it like they care but don’t really listen to the answer”. It’s something that’s bugged me about my consultant appointments. This also got me thinking about who really does listen and for me the results are a little depressing.

Let’s start with those who listen. The Psoriasis Association are the first. They work tirelessly to add volume to the patient’s voice, helping with research, listening to patients concerns and, importantly, understanding what the patients go through not only with condition, but with the frustration in getting the right treatment.

Next on the list is NICE. The organisation that listens to patients, charities and support groups to push changes in the way patients are treated. They do sterling work and I feel maybe have the same problem as many patients, wondering if the people that can make the changes are really listening.

The Mental Health Foundation listen to patients, they recognise that psoriasis causes as much mental issues as physical. They have helped, alongside the Psoriasis Association, to push for changes in the way we are treated. The “See Psoriasis: Look Deeper” campaign is testament to this. Explaining this as briefly as I can would be to say “Don’t just look at Psoriasis, listen to the patients, understand the pain this causes them inside”. You can read more about the campaign here.

Family and friends listen. They want to help, they want to understand. Sometimes us patients have to remember we need to actually talk to them. You may say your family and friends don’t understand but have you actually explained properly what is going through your mind and exactly how much this condition affects you?

Some may find the next on my list a little surprising, pharmaceutical companies. Yes they do listen, they support patients, offer advice and also push for change in the way we are treated. I hear a lot of patients say that the pharmaceutical companies are only in it for the money. Having met quite a few representatives of the industry and seeing the work they do I have to disagree. Funding projects which they are not allowed to advertise with, spending a vast amount of money in promoting well being and focussing on patients needs for no advertising is something you wouldn’t find a lot of companies doing in other industries. By listening to patients they are trying to improve their products and not just make more money. I know there will still be some cynics out there, just remember this, in the UK you cannot sell or advertise prescription medication direct to patients so ask yourself “what’s in it for them?” It certainly isn’t increasing sales, well not directly.

My GP listens to me. I can’t talk for all GPs around the country and I have met others who I know have specialised in dermatology. My GP stopped me from full on depression, stopped me falling into a dependency of anti depressants. All because he listened to me. He understood at that moment just how much this disease was killing me. Yes I know psoriasis is not terminal, it certainly would have killed me though if I had not been pulled out of the despair I was in. All from someone asking how I felt and then acting on my response.

The last group I can think of are nurses. The few people who physically treat us that actually listen to us. When I have gone for light treatment they ask questions, they make notes, they chart your responses. Okay so you could say they write it down, doesn’t mean they listen. I know they listen as the next time you see them they ask further questions, they know how you felt last time, they pick up on your mood. You are not just another file and another number off the waiting list.

Sounds like quite a few people listen then. So why should I have any complaints? Back to the start of my list, the Psoriasis Association cannot advise me on which treatment is right for me, they cannot prescribe a treatment for me. NICE are in the same position, they can suggest to healthcare professionals how I should be treated, they cannot enforce that and again cannot prescribe a treatment. The pharmaceutical companies can make the treatments, I cannot go to them and ask for a bath load of ointment and, yes you guessed it, they cannot prescribe a treatment. My GP can prescribe certain medications up to the point where my psoriasis becomes severe and they have to refer me. Not because of a lack of knowledge, due to procedure and process. The nurses cannot just let me have some light treatment when I need it or feel like it, they need instruction from someone.

Who is left off my list of who listens? The consultants. Now before I start on this, lets make one thing clear, I can only talk about the consultants at my local hospital and I have been lucky enough to meet consultants from other hospitals who are taking great strides to improve treatment of psoriasis patients. My experience has been to be asked questions to which my answers seem to have no relevance. I have been asked how my day to day life is affected by this disease to be told, “oh well, it doesn’t look so bad so we’re referring you back to your GP”. I have been in a five minute consultation which only lasted 3 minutes, asked numerous questions, not looked at and told I would get light treatment. Quite clear that the treatment had already been decided on and I could have just as well not have turned up, they may as well have just referred me on. My point really is that the person who can really make a difference and decide what is the best treatment for me doesn’t really listen.

My frustration with this disease continues to be exasperated by people asking me questions and not listening to the answer. I could have diagnosed myself exactly as the consultant did since my first light treatment course. It would save a lot of time and money if I just referred myself and didn’t bother the consultant’s time. My view is and has been for some time, do not bother asking a question if you are not going to listen to the answer.

So, you are reading this post, you may even look at the pictures on the images tab. I ask you this, are you listening?

Be More Bob

When talking to psoriasis patients you will often hear comments such as “I hate how everyone stares” or “I’m worried what people think when they see me”. This is sometimes because it does happen and sometimes because it is in our heads. The world seems to focus on how we look, what we’re wearing, are we fashionable, good-looking? Fortunately I have it all, joking. I have been through the same worries, experienced the same anxiety when I’m particularly flaky or even when I’m fairly clear. What psoriasis patients need, I think, is for other people to be more Bob.

What do I mean by be more Bob? And “Who is Bob?” you may ask. Bob is my cat. Meet Bob.

SONY DSC

Bob doesn’t care what I wear or how my skin looks. Bob just accepts me for who I am, flakes and all. He is happy just to live with us and of course to be fed. He is that blind to psoriasis that he will scratch me whether my skin is bad or not. It doesn’t mean anything to him. This is what I wish people were like. Well, obviously I am not getting up early in the morning to give everyone their breakfast and to let them in and out of the house when they want. I think you get the drift though. It would be the same with any pet, the love they give is unconditional. You could grow a second head and the most you may get from Bob is “oooo that looks interesting, I’ll give it a sniff”. Yes, he talks, did I not mention that?

 

I have had moments with Bob where I have wanted to throttle him, when he has scratched my leg (probably my fault of course) and the skin breaks easy. Most of the time though I just want to give him a big hug, although he’d probably scratch my eyes out for that as well. As you would expect from a cat, it has to be on his terms.

SONY DSC

There are some occasions though when I think maybe he is aware of my skin. Like him falling asleep next to me and his paw is on my psoriasis covered hand. Or falling asleep myself and he cuddles up to rest against my flaky skinned back. Then this morning when I was about to put my treatment on, he walked up to me, looked at my legs and gently pressed his nose against a couple of the patches. I wonder how many of us could honestly say that if they saw someone with dry flaking skin that they would not be bothered about giving that person a hug or even just standing close to them.

So next time you see someone who doesn’t conform to the supposed level of beauty that the media impresses upon us or isn’t wearing the right clothes, whether they have psoriasis or not, try being more Bob. No you don’t have to press your nose against them.

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Looking for the positives

With psoriasis it is very easy to get bogged down with depressing and negative thoughts. Restless nights, constant fatigue, sore skin, anxiety and embarrassment are all common with psoriasis patients so it easy to see why psoriasis patients do not always have the most positive outlook on life. A few people have commented to me recently that I have changed this year, the negativity is mostly gone and I appear happier. This hasn’t only been following treatment to give me clear skin (for a short while), it has been a determined mental change in my attitude.

Getting down, fed up and depressed about my condition was making me, well, it was making me fed up and depressed. I also know that how I feel and act affects those around me. There have been factors that have helped, the arrival of Bob the cat last year and my decision to leave a stressful job have also had an impact. I do think that if I had not made changes to work and to my attitude towards psoriasis that I may have soon been back on the precipice looking down into the darkness of depression.

One of the ways of fighting psoriasis, I discovered this year, is to find a positive out of every situation where psoriasis attacks. Recently I went to the work’s Christmas party. It was in a great venue, we had an excellent hotel laid on for us to stay and I was really looking forward to the night. Being Christmas, everywhere was busy and the venue soon became very warm, especially for someone with psoriasis. I could feel my skin starting to crawl, then the itching started and I felt like I just needed to escape. When I get uncomfortable like this, I become very self aware of how much I’m fighting and scratching and so the anxiety sets in. The only way I find to stop this is to leave, which is what I did, with a little bit of guilt about leaving my colleagues so early. I got back to the hotel feeling angry with myself and after cooling down and putting on some cream I started to relax again and felt a lot better.

So my Christmas party was cut short and psoriasis looks on laughing, thinking it has won. Let me tell you , Psoriasis, you didn’t win. My wife and I had big plans for the next day, shopping in London followed by dinner and a show. The only problem was, we had left the tickets for the show at home. So here’s looking to the positive. At 5am in the hotel when my wife, unable to sleep, suddenly realised the tickets were at home I was of sound mind and not hungover to check the internet to see if we could get replacements. The answer was no. Luckily we were staying close to the station and my bright clear head, but tired body, was able to jump on a train and head back home to get the tickets before breakfast at the hotel. If anything, psoriasis actually helped me. If it hadn’t been for that mini flare up I may have not been in any state to make that mad dash home and back which would have made a big change to our plans. So thank you psoriasis, I’m not sure how you knew we’d forgotten the ticket.

With Christmas so close it is important to me to stay in a positive mood and I hope this little tip helps other patients. Just remember, even when psoriasis looks to be winning, you can turn it around. Happy Christmas all and I wish you a healthy and itch free New Year.

I have been honoured with a nomination in Healthline’s Best Health Blogs of 2014 and I need your votes. I am not sure how this blog has managed to get this far. What started as a rant and sounding board to stop myself going insane seems to have grown and I am still amazed that anyone finds this at all interesting. Thank you to everyone for your support, it is truly appreciated and has stopped me from giving up on the blog several times.

If you do have the time and feel that you would like to vote please visit the Contest Site. To find my blog you need to search for “myskinandi” or “psoriasis”. If you do vote, thank you.

I wish you all good health and will take this opportunity to wish you a very Merry Christmas and Happy New Year.

Simon.

http://www.healthline.com/health/best-health-blogs-contest

Being Watched

I went very quiet on the subject of psoriasis after my light treatment earlier this year. Thinking about it, I was just glad that my skin was cleared and didn’t have to worry about how I looked or feeling tired after another sleepless night. Things have been good, new job, new skin, well it’s like having new skin. Things seem to be on the up. I can walk through town in short sleeves without worrying about people staring at me, well they may look at me and think “put a coat on man, it’s winter”. It would be even better if I could shake off the feeling of being watched though. I can feel eyes burning into me, watching my every move as if they’re waiting for something. I can see this person out of the corner of my eye, partly hidden in shadow. I can’t make out their face, it’s almost like they’re not really there.

The person watching me is me, Simon with psoriasis. He’s there watching for any sign of weakness, winter coming, my recent cold, a few failures in the kitchen that have been stressing me out, a very busy time at work to pile on a bit more stress. The old Simon (okay younger Simon but you know what I mean) may have crumbled and given in to Psoriasis Simon. Ten years or so with this condition has taught me a lot and with words from friends and family ringing in my ears the fight is a little easier.

What Psoriasis Simon doesn’t know is that I know how to deal with a cold now and whilst a week or so ago I thought a flare up was coming, it was only a mini flare. Yes I still have a few more patches but they’re not red, they’re not too itchy and they’re calming down already. So many winters with psoriasis and I know how to deal with that. Yes work is busy, for the company I work for it is a very busy time of the year for us. Is it stressful? I guess it is, is it going to be an ongoing, tear your hair out kind of stress? No. It’s the good kind of busy, it means we’re doing well and it is a great bunch of people who I have the pleasure of working with. Dare I say that work is fun? Yes, I dare.

So to the kitchen, This has been harder to deal with. Food is my passion and with under-cooking, burning and dropping dinner in the sink, my temper has been strained and my brain a little frazzled. This is one of the toughest things for me to deal with, not being able to cook. As I rapidly lose my cool Psoriasis Simon looks on with a smirk, his scaly fingers reach out to take hold.  year or so ago I may not have been able to shake loose from that grasp. Now, with a hug from my wife, a few minutes to myself and very long count to ten, oh and a “I am never cooking again” tantrum, the next night I am back in the kitchen.

I would like to say my return to the kitchen the next night was a success, I think it was. It seemed to be okay but my cold has been the type that I really can’t taste anything. Tagliatelle and pesto with added basil and extra garlic gave me a hint of flavour. The four measures in a JD & Coke meant I could actually taste the JD. This is stress for me, this is where Psoriasis Simon starts creeping back. Somehow I have kept my cool (ish), I have cooked each night apart from last night when my wife made a lasagne, which I am rubbish at and for the first time this week I could taste…… so maybe my cooking wasn’t too good after all.

This post, Being Watched, started of looking like one of my old depressing posts about psoriasis controlling me, making me mentally unstable and destroying my life. I’ve learnt to take moments like this and turn them around. Psoriasis Simon can watch, he can stare as much as he likes, I hope he enjoys the view of me getting on without him. I may even be nice enough to let him have some of my cooking.

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