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Something I don’t mention a lot on here is that I have psoriatic arthritis. The reason I don’t say much is because generally it doesn’t bother me. The worst joint is the knuckle of my right thumb. Yes I have very specific psoriatic arthritis. Maybe, like me, it is very lazy and just can’t be bothered to go anywhere else.

When I first got it,it just ached a it now and hten and suddenly it was twice the size it should be and I was experiencing intense pain. Just hone hand out of action and I had to take two weeks of work to rest it up and try to get the swelling down. It was very annoying as I am very right handed, in fact my left hand is pretty much useless most of the time. It meant not being able to cook, unable to do up buttons or tie up my shoe laces. As much as it was an annoying time for me, I think it was worse for my family as I became a grumpy and very irritable git.

Recently I have had another flare up, in fact I am in the middle of it now and I have learnt a few things.

  1. Psoriatic arthritis really is painful. How so much pain can be caused by one joint is beyond me. The slightest knock and I am rolling on the floor crying my eyes out. Okay, a slight exaggeration but you get the point.
  2. I can’t wear 501s. The pain in just trying to do up the buttons is excruciating. I love my 501s and I am sure they feel most unloved as I have cast them aside for easier to wear clothes. Jeans have feelings too you know.
  3. Work is a pain in the, well, thumb. I work in accounts so spend much of my time at a keyboard and typing one handed is something I just cannot do a hard as I try not to use my right hand too much. But have I complained? Have I moaned about how much my hand hurts and aches? Have I gone on about the fact that work is just making it worse? You bet I have. I’m making sure everyone in the office knows.
  4. I have a new found admiration for anyone missing any part of their body. I really don’t know how they do it. I just have a thumb out of action and I feel pretty useless most of the time.
  5. Picking up a pint of beer is really difficult, so I am learning to drink left handed.
  6. My left hand is rubbish at almost everything with the exception of changing gear when I drive. (Becoming better at picking up pints.)
  7. I quite enjoy instructing my wife in the kitchen. Chop this, slice that, wash these, get the dishes, pour the wine. I would have made a great head chef and I’m not even shouty.
  8. My cat has no idea when I’m in pain. What they say about animals feeling when you’re in pain is a load of rubbish or maybe I’m just moaning about it for a bit of sympathy and he is wise to it.

I have been a lot more positive and light hearted about it this time. Honestly, I am in a lot of pain and even typing this out sends a shooting pain up my arm. The difference is now I can see I’m not that bad off. When I first got psoriatic arthritis I was also having a very bad time with my skin so it was a double blow. With my skin partially under control I am able to cope with the pain. Did I mention that it’s really painful? Not sure I got that point across.

This has made me appreciate my thumb and that cats must have a really bad time of it not have opposable thumbs. I would give my thumb a thumbs up and say hang on in there, it will get better. I would like to give psoriatic arthritis the thumbs down. The only thing is I can barely move my thumb so it more of a thumb neither up nor down to both.

I will leave you with this. If you know anyone with any form of arthritis and they mention how painful it is, please believe them. It is not just aching joints. For me it is just one joint and I am having to take anti-inflammatory’s and strong painkillers to cope. There are people with much worse cases than me so give them your support, or a thumbs up!

No I’m not getting married. Today is Friday, the start of the weekend and the start of something new. I am meeting with Jo from Philips later today who will be lending me two Philips BlueControl units. As Philips call it this is an “Innovative blue light treatment of psoriasis”.

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Many of you may have spent lots of time staring at the name Philips as they make most of the UVB light bulbs used in light therapy. They have now designed an LED light treatment, BlueControl, which is UV free and the results so far have shown there to be no side effects. It is aimed for people with mild to moderate plaque psoriasis on the legs and arms. Each use takes about 30 minutes, which may sound long if you have quite a few plaques to cover, although you can use this at home and just have it on while having your tea, reading a book, playing a video game or having an afternoon nap.

When I was given the chance to try out the units myself I jumped at it. The thought of a side effect free and convenient treatment was too good an opportunity to miss. Also, the option to continue with your topical treatments is entirely your own choice. So if this means no more sticky ointments or greasy creams I will be very happy. I will be even happier if this works for me.

BlueControl is still being tested and I would be happy to pass your details on if you are interested in trying this out. Philips do ask that you would be willing to communicate with them regulars and be happy to  provide before, during and after photos. They are pushing to have BlueControl made available on the NHS so the more people who give positive feedback the better.

So 8th May 2015 marks a new start and possibly new healthy skin for me. There will be continual updates on the blog whether good or bad.

Disclaimer: Please note that I am not employed or paid by Philips. The units remain their property and this is a loan of the equipment.

The Cancellation

A few of weeks ago I was sent my appointment to see the consultant for my follow up after UVB light treatment last year. After the disappointing consultation previously I decided to cancel this. After years of seeing doctors and follow up appointments after light treatment I knew what the response would be. “Well you’re not severe enough for us to consider anything else so it’s back on topical treatments.

I called to cancel the appointment and followed it up in writing. I explained my reasons, which were the poor treatment, lack of eye contact during consultations, lack of actually examining my skin and total lack of confidence in the consultants at my local hospital. The reply “We confirm cancellation of your appointment”. That was it. Possibly it would be a little cynical of me to think that the same attitude runs through the hospital.

I am glad to say it doesn’t. I have mentioned before that while I was undergoing light therapy the nurses were outstanding. The compassion and empathy they show makes you feel comfortable and at ease. They are remarkably good and getting you to talk about your feelings without you even realising too.

Having had to visit the hospital for a completely unrelated health matter reinforces my view that the poor attitude in Dermatology is not hospital wide. I spent two hours in one outpatients clinic and things ran fairly on time. I had to see a nurse and a consultant separately which was organised extremely well with only a few minutes back in the waiting room between both. There was no rush, lots of explanation and, importantly, eye contact. It may sound silly, eye contact is so important. Would you trust someone who doesn’t even look you in the eye? It restored my faith a little in the hospital and reinforced my decision to cancel the dermatology appointment.

So, what did I do after cancelling? I went back to my GP and we had a chat and after discussing topical treatments we agreed on one batch of a steroid gel to kick my psoriasis in the butt before going back on a mild topical treatment. The side affects of steroid cream cannot be ignored so this will be a one prescription treatment. There is another reason for doing this to calm my skin down, I will be trying a brand new treatment soon which does not use steroids, in fact it doesn’t involve and form of prescribed topical treatment. I am meeting with the company responsible at the end of this week so look out for an update soon.

I should add that I did not have a knee jerk reaction to cancel my appointment. I weighed up the pros and cons and considered if I would be better off going or not. The fact I was due to see the same consultant as before and that even if I asked to see someone else they couldn’t guarantee it on the day it just didn’t seem worth it to me. I do have a GP with a dermatology background which is useful. I don’t want to encourage people to cancel their appointments, please do think about it and consider your options. If nothing else, make sure you cancel in plenty of time so you do not get a bad record.

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.

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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.

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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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