Still talking psoriasis

Psoriasis, yes that again. Not sorry if you’re bored of me talking about it. You can’t be as bored as I am of it. Estimating 17 years with this decease and even though I’ve had clear skin in that time I have never felt more positive. It isn’t just that the medication is working, it is the support of the medical staff. Today I was asked why am I better. Honestly it is becuaee of where I am, the medical staff looking after me understand, they care, they listen. Listening is the single most important part. Compared to a lot of patients I don’t actually talk about psoriasis that much. The thing is, I talk to all of you but my previous consultant never listened so I stopped talking to them.

It makes me wonder if I came across as a moany old so and so. It doesn’t matter if I did as no one has ever told me to shit up and more so I have been encouraged to talk about it. It seems whilst my previous care didn’t understand the deep rooted mental issues connected to psoriasis, you know the professional, you all did.

So why have I decided to blog again? This year I ended a 15 month wait to get the hospital and consultant I wanted to see. I received the care and understanding I had needed for 17 years. We talked about my psoriasis, how I felt and why did I change hospitals. We also discussed the future. Before I met my current consultant, not one medical professional had asked how I feel about the future. It threw me to start as I didn’t know how to answer. I have thought about the future with psoriasis but asking myself I never really answered. The future is scarey on the face of it. If I woke tomorrow suddenly covered again I don’t know how I’d feel. Depressed, angry, all the feelings I held for so many years about this decease. I was also asked how I would feel if the current medication hadn’t worked

So I sat, I thought about both questions. Should I wake tomorrow finding my skin covered in psoriasis again I would probably cry, scream, shout and wait until I had calmed down enough to contact the dermatology team. When I think that could happen, think about the future I relax. It scares me but then I know I have the best people looking after me. They listen, they care. There’s the two key elements again. Listening and caring. I cannot stress enough how, when this is genuine, how much it helps. Even if things do not work those two elements make me trust the team. I know I can’t rely on them to help me and that they genuinely want to make me better.

A life with psoriasis is full of uncertainty and you need to rely on people. Trust the information and advice you are given. My consultant is one huge part although I know she would argue she’s a small part of it. There are many others that help me, my employers (giving me time for these consultations), my friends, family and, the most important person, my wife.

Maybe it’s because it’s getting close to Christmas I am feeling this way and wanting to thank everyone. If it is, then so be it. Whatever the reason it doeant change the fact that the future for me and psorisias is bright. Well for me it is, psoriasis may beg to differ.

Most likely the last post for this year and for some time so happy Christmas.

Psoriasis – The opportunity to say thank you in person

When you have any illness or require any treatment you get the opportunity to say thank you to those who help you. Well most of them. The people you meet, such as your doctors, nurses, support group, all of those people you come into contact with during your treatment and recovery you can meet, shake their hand, give them a hug and say “thank you”.

There are others who help you who you may never meet, never even know about or simply not take notice of. To me, these are some of the unsung heroes of our treatment and I know some people will possibly disagree. However, without these people there would be no medicines to helps us. I am talking about the employees of Pharma companies, researchers, scientists, every single person that goes to work each day with the sole aim of making people’s lives better, even though they rarely receive any thanks.

Having psoriasis I also count the numerous companies that make skin care products and continually develop them to make them more effective and more comfortable to use. As part of my recovery from years of depression and anger I found a way to help was to start saying thank you to people. Thank you for helping me enjoy life again. Doing this makes me feel better because it adds positivity to my life. It is very true that doing something nice makes you feel good.

So over the last few years I have taken time to thank everyone I can think of who has helped me over the last 15 years. I have written letters, emails, left on line feedback, tweeted. Better than this though is to say thank you in person and recently I was given the opportunity to do just that.

Leo Pharma are one of the pharmaceutical companies that produce treatments for psoriasis and they are on a mission to help people achieve healthy skin. Now before anyone gives me the “Pharma companies are only in it for the money” whether you think this or not, without these companies we would have much worse lives. Being UK based and how our pharmaceutical industry is regulated, I just don’t see it. All the campaigning and support companies give here cannot be used to promote products or be used as marketing.

My relationship with Leo is fairly close as up until late last year I was one of the first and a regular blogger on their Quality Care site. This was just the start of a journey which would help me immensely. Whilst blogging for them I met not only some of the Leo staff, I met fellow patients and bloggers and learnt from them. I saw the angry depressed person in me and the often positive happy people they were. It made me change, their attitude rubbed off on me and I got better for it. It is even noticeable on this blog that my posts became more positive over this time.

Then there is the Leo Innovation Lab. A bringing together of brilliants minds to develop non-medial ways to helps us. Such as HelloSkin, Flayme and PsoHappy. There are more and I have only mentioned those I have used. I haven’t mentioned their products and I won’t. I would guess some of you have used them and never even realised. I didn’t know who Leo were or what they did until approached about blogging for them. So about three years ago I realised they had been with me from my very first diagnosis. The people at Leo had bene standing by my side and I never realised. This is why I wanted to say thank you.

Last year when I decided to leave the Quality Care blogging team it was not goodbye, it was a time I felt I had nothing more to offer and also I want to hear what others have to say about living with psoriasis. So I wrote to them and you can probably guess it was a little bit more heartfelt than many of my other thank yous. This year I was contacted and asked if I would like to visit their offices in Copenhagen and meet their employees to give that thanks in person. I could not get time booked off work quick enough. This for me, as a patient, was a very unique opportunity. I was going to meet the people who make the products that treat me. How many of us get that chance?

It was very much a flying visit, I had a quick walk round the city the day before and arrived fresh one morning at their global HQ. I have to mention that whilst I was going to be speaking to their employees I cannot mention the nature of the event and in fact apart from my five minutes on stage I was kept away as I am not and never have been a Leo employee. During the day though I did get to chat and talk to many people and it was a bit odd to me. People kept wanting to hear about me, to know how I got through each day and about my psoriasis. All I wanted to do was say thank you to every single person I met. There were moments when we almost cried, there was a moment when we did. It was an emotional day and one I will never forget.

This would be the same for any other company out there who gets little recognition and certainly rarely any thanks from the patients. For any illness, any condition, if you ever get the opportunity to thank the people that make you better from start to finish please take it. Please write to them, call them, tweet them Facebook them, do whatever it takes to let them know you are here because of them. The feeling I got from the Leo staff was that they care, they care so much and I want them to keep caring and keep getting up for work each day knowing they help millions of people just like me. Again this goes for all pharma companies. You get little recognition, If a doctor prescribes your medicine, who is thanked? The doctor. Does anyone get a message to the R&D team that made that product and say thank you, you made a difference.

So from me, just one patient it is a huge thanks and that goes to the following, although not exhaustive list:

My family, friends and of course Bob the cat.

The staff, doctors and nurses at my GP and Broomfield Hospital, Chelmsford.

The Psoriasis Association (UK Charity), National Psoriasis Association (USA).

The Pharma companies, Leo Pharm, Novartis, Celgene, GlaxoSmithKline to name but a few, I know some make products under license.

Dove, Aveeno, Oilatum, Galderma, Westlab, Epaderm, Hydromol, Neutrogena

There are probably some I have missed off here and sorry to those I have.

 

Please note that whilst my trip to Leo Pharma was funded by them, it was all within current industry regulations and costs and expenses were nominal. So, no I don’t make a living out of doing this. I have no affiliation with the company and cannot endorse any of their prescription products. Please always consult your doctor for medical advice.

Psnow & Psoriasis

For those that don’t know, I live in the UK. It’s been a bit cold and snowy over here, although if you watched the news you’d think the whole island had shipped off to the Arctic and the ice age was beginning. Apparently we have a polar vortex hitting us which I like to think is something where Doctor Who appears in his T.A.R.D.I.S to help save the world again. Oh and don’t ask me which Doctor and for any opinions on it, I’m not getting in that argument. So anyway, it’s a cold, below freezing, got to minus 6 tody apparently (one for the fact fiends).

Now my skin, so far this year, has been more up and down than I have known for some time. Literally one week no flaking, the next week peeling like a snack. The weather is a bit contributor to that, something I have no doubt about. I can actually feel it, my skin is drier despite increasing medication and there are days I think it is okay and can literally feel it scale and crack up as I walk to work and the cold wind blows against me. Before anyone tells me how to dress, prepare etc for winter, I’ve had this condition for over 15 years now, I know what to do, I know what causes the issues. My point here is that this current period of freezing weather is making my skin react different to normal. One thing abut psoriasis is that it is anything but predictable.

I am trying to remain upbeat, after all my recent outlook is to remain positive, stop moping and being depressed about it. Good to write that down and remind myself really. Also many of you will know I try to put a bit of humour into my writing to make psoriasis seem less gloomy so here it is and I hope you’re ready, I mean I’ve just made you read all of the above for this one thing I actually thought of as the catalyst for this post. Hold on to your bobble hats,…..

I love the snow when I have psoriasis, it’s the one time I can flake as much as I like and no one will notice.

I’ll get my coat…. and my scarf, gloves, wooly hat.

#Psoriasis Hashtag Censored

You may have seen in recent tweets if you follow me, The Psoriasis Association, Get Your Skin Out or the numerous other Psoriasis awareness raisers out there that Instagram have started blocking certain Psoriasis hashtags. So that’s not the images themselves, just the hashtags to stop people being able to search by them. Why? Well there is no reason given and there is a campaign, led by The Psoriasis Association to get Instagram to answer. My assumption on the reason will be that someone didn’t like what they saw so have complained. Rather than looking into it, it seems someone at Instagram, or maybe it’s just an automatic process, have blocked hashtags. I hope it’s an auto process and there isn’t someone at Instagram who actually thinks we should be hiding, that would be a very sorry state of affairs.

In a world obsessed by body image this isn’t that surprising. We are told every day we must look perfect. Unfortunately world, we don’t and what a boring world it would be if we were all perfect. It takes some people years to come to terms with their skin whether it be psoriasis, acne, eczema, vertiligo to any other skin condition you can think of. It’s not just those with skin conditions. there are people out there for other reasons that do not fit the perceived definition of normal or beautiful. The reality is that our differences are what makes us beautiful. It took me over ten years to start showing my skin in public after years of thinking people are staring at me. The reason I started showing my skin  more is to show it is normal.

Going back to the hashtag censoring though I just cannot make any sense of this. Why the hashtag and why not the image. Has someone really seen a picture of psoriasis and said “Oh the picture is okay but I really don’t like you saying Psoriasis or PsoriasisAwareness. I just don’t get it. Why would you stop us trying to raises awareness of a condition. You do realise the main people that search for these terms are those with it, working in healthcare or know someone who has this condition. Why stop them finding resources? Are there really people out there going “I want to be offended today, I know I don’t like people raising awareness of psoriasis so I’ll just search #PsoriasisAwareness”?

So dear Instagram, in your own way you  are trying to censor us or our skin, I’m still not sure entirely what your point is as you won’t answer. In a funny way I wish it was as easy as censoring psoriasis, if I could censor it from my skin I would. Not sure if you realise this but I do not actually enjoy living with this condition, putting on lots of topical greasy treatments, flaking everywhere I go. Nature gave me this condition, it is not something you can just censor and hope it goes away. We are not living in the dark ages any more, there are no leper colonies to ship us off to so the “beautiful people” do not have to see us. In fact, if you consider yourself beautiful and are offended by the sight of psoriasis then maybe you need to look in the mirror, look deep inside yourself and see just how ugly you are inside.

I will not apologies that I do not fit your standards of beauty. I will not apologise if my skin offends you. If you would just like to speak to Mother Nature, God, whichever deity you think runs this world and ask them why they gave us this then please do. We did not choose to have a skin condition, it was given to us. Being bigoted or racist are decisions you make and there is plenty of that not getting blocked on social media. So I ask again, why censor something that is natural? We are not freaks, we are an amazing community of people who live with a chronic condition every single day of our lives and will continue to grow confident and will remain some of the most beautifully different people in this world.

What can we do to fight this? Well we could all delete our Instagram accounts. That means they win, whoever was offended by an image of psoriasis is proven to be right and that we should hide away. No, we don’t hide, we give an even bigger presence on social media, we tell the world we exist and you cannot just ignore us. The Psoriasis Association have started a campaign to gain a response from Instagram on the subject and I would be grateful if you would share this campaign and sign. Details are here. There are instances of censorship on Facebook too, although it seems more prevalent on Instagram. These are two of the biggest social media platforms in the world and sadly without them it makes it difficult to spread awareness.

For those with the condition, remember that no matter what Instagram or Facebook may do you are never alone, you have millions of friends out there and it is full of some of the most amazing people you could ever meet.

 

 

 

 

Be more like Psoriasis

If you’re clicked this post you are probably thinking “What do you mean by be more like Psoriasis?” You see, I’ve been thinking. Psoriasis isn’t all bad, in fact it has some good sides. You may need to bear with me on this but believe me, it makes sense, well in my mind anyway.

Psoriasis didn’t’ attack me because of my age, colour creed. It just doesn’t care where you’re from, what language you speak or what your religious beliefs may be. Psoriasis will descend upon just if it feels like it.

Okay, so psoriasis may be a sadistic, evil little so and so but at least it doesn’t pick on you because of anything you’ve done. (Oh how I look forward tot he comments of “you must have lived a bad life, that is why you’re being punished”.) The thing is, that doesn’t matter either, whether you’re good or bad, your chances of getting psoriasis are pretty much the same.

Now I like to get a long with everyone and I, like psoriasis, do not care what your religious background, the colour of your skin or what football (soccer to my American friends) team you support. Let’s have a beer (or non-alcoholic drink of your choice, see I don’t even discriminate against tee-totallers), let’s share food (mostly steak but hey, if you’re vegan or vegetarian then grab something to your taste) and let’s just get along. In today’s world it seems we don’t do this enough.

So, like I say, let’s all be more like psoriasis (expect the making your skin peel and bleed, itch like billy-o, make us feel depressed and/or anxious and generally make us feel annoyed). Hmmm, have a feeling it is a good thing that I didn’t go in for professional debating.

 

Happy Christmas from My Skin and I

I have found it hard this year to write a Christmas message for the blog or even review the year which so many people will do. A lot has happened this year, some bad and I’m glad to say mostly good. With Psoriasis it is easy to focus on the bad things and let them take seed in your brain. It is a reminder that psoriasis is not all about your skin, it is much more. I have often said it is a disease that attacks your skin, your body, your mind and your very soul.

So all I want to say this year is to keep fighting, turn the negatives into positives and if you find yourself with nowhere to turn please remember there are millions of people who share this condition with you. 
From my family, including Bob the cat, we wish you a healthy, itch free Christmas and New Year. May the only flakes you see be made of snow.

Another day, another cold with Psoriasis

Let’s get something out there straight away. Yes I have a cold, no it’s not man flu. I’ve said this before, if you think man flu is bad try psoriasis flu. Okay so it’s not quite flu but even a cold when you have Psoriasis makes a cold all the more annoying.

About a month ago I went into work with a slightly tickley throat and thought I may have a cold coming on. By 11am I think it was in was on my way home with a banging head, sore watery eyes, ear ache and with little energy. That’s how quick a cold can  attack when your immune system is busy fighting something pretend infection. I don’t mean Psoriasis  is made up, one of the explanations of Psoriasis is that your body thinks your skin is under attack, hence the rush of blood cells to the skin and increased growth rate to repair it. Or as I like to put it “I’m not a hypochondriac, my skin is”. 

So while my body is busy fighting something that isn’t there, something like a mild cold can become a bigger issue if not treated quickly. So that day I totted off home, dosed up and spent nearly three days in bed so by Monday I was fit for work again. 

Added to this my skin flared up so I auvergne been having to up my treatment of that since then as well. Over the last week it has been looking a lot better and I’m getting it back under control and then, like I shouldn’t have expected it, I have a other cold. I felt the signs yesterday and started dosing up straight away and now panic sets in. Will my skin react to this cold? Well so far no, it actually less itchy than it was yesterday.

This kind of goes back to my thoughts that psoriasis never does what you expect it to do. It can react to situations or it may decide it can’t be bothered. The fact it hasn’t flared yet does not stop me worrying that it might just be a delayed reaction though. So the treatment of both the cold and my skin is increased. 

Years ago this was a real pain. I would moan and groan and complain that I have to look after too illnesses at the same time. When a cold leaves me with little energy I don’t want to have to worry about my skin too. 

Now, even though this may seem like a moan, it’s just something I do. I get on with it, “chin up”  as they say. Honestly this isn’t really a moan, more a get it off my chest, much like I wish I could get this cold off my chest.

Psoriasis – Make use of it.

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.

Psoriasis, what is it good for?

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.

Psoriasis: Removing the anger

Anger. Yes it deserves it’s own sentence as it is a word commonly associated with Psoriasis. Anger at the time it can take to get the right treatment, anger at others because you’re tired and stressed from a lack of sleep, anger because of a flare up, anger at yourself for letting it get to you. Then getting angry at others because they ask questions you are tired of answering.  Be honest with yourself,  do you know about every illness without having to ask questions? There are many reasons people get angry with psoriasis, I know as I was one of those people. Did you notice I said “was”? 

Okay this may surprise a lot of people who know me, they have seen over the years how much I hated having this condition, how much it got to me, made me shout, scream and lock myself away. How much I felt the world was against me. No more, Psoriasis, no more.

I am not sure how it clicked in my head, it only happened recently, that I realised that most of the distress I get from Psoriasis is because I was angry. The usual questions of why me? Why can’t it be cured? Why is treatment such a hit and miss affair?

Whilst having a cup of coffee, sat in my garden on a warm sunny day I looked around at what I had. Bob the cat was rolling around in the grass, the garden was blooming, my herbs were growing well as were my tomatoes and strawberries. You could say I had a little thyme to reflect. I looked at the house we have lived in for two years now and thought, I have this. I have so many things I love, a beautiful wife, Bob the cat, a house full of character and a kitchen made for cooking and entertaining (should probably do a bit more of that).

All of this has been achieved whilst having psoriasis. So why should I be angry with it? It hasn’t stopped me getting what I want. Okay it may have made me miss a few parties and shut me away a few times but that was just part of the journey. Part of coming to terms with the fact I have this now and there is little I can do about it. Okay I can take meds, look after my skin and diet. I can’t create  cure though and no amount of nagging the scientists and experts out there from me is going to suddenly produce one.

Psoriasis is with me for the long haul. It has decided to be with me so I take solace in the fact I must be such an amazing and charismatic person that it wants to be with me so much. Acceptance is the one thing I said I would never do and I know a few people who will read this with a smile now and a “I told you so”.

So my advice to anyone still struggling is stop being angry. Accept that Psoriasis has chosen you because you are amazing, it just cannot bare to be without you. Treat yourself well, look after your skin and, most importantly, live your life and make the most of every day.

To finish, as he’s been mentioned, here’s a little pic of Bob the Cat, especially as today happens to be International Cat Day.