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**Please note that the closing date for nominations has now passed**

I have left this post live as I think it is a great award and should be known that the nurses that help us are being recognised for all their hard work.

I have received an email about this great award recognising  the work of Psoriasis nurses. From my personal view, the nursing staff have bee pivotal to my treatment and are the ones who have made me open up more at appointments. They listen to my troubles, share a joke and gained my confidence as I have had to show the extent of my psoriasis to them. I have pasted the email below:

 

“Just wanted to let you know about the ‘Psoriasis Nurse of the Year Award 2016’ which launched this week.  This new award, supported by the British Dermatological Nursing Group and the Psoriasis Association, recognises the critical role of nurses, and the difference nurses can make to people living with psoriasis in the UK and the Republic of Ireland.

 Anyone living with psoriasis, including their families and friends, can nominate their nurse. The nomination form can be downloaded at www.bdng.org.uk/whats-on/awards and the closing date for submissions is 23rd May. Forms can also be requested by emailing nurseaward@redconsultancy.com.

The winning nurse will receive their award during the BDNG’s annual conference in Bournemouth on 22 June 2016. The person who nominates the winning nurse will also be given the chance to present the award in person.

I’m sure you will agree that this award will be a great way to recognise a nurse who has gone above and beyond in caring for people with psoriasis.  Please do feel free to pass this information on to anyone who you think may be interested in nominating their nurse for this award.”

 

I would like to thank every nurse out there. So often overlooked for the work they do and from my side it is greatly appreciated. You have helped keep me well and sane.

 

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Okay, so I was going to take a break until at least the new year and technically I am. Even though I’ve not been writing on here I have been keeping an eye on the site and seeing the views and receiving some lovely comments. Thank you to all of you who sent messages of support and understanding for my need to take a break. Funnily enough that soon after deciding to take a break I was filled with lots of ideas that I could write about. I guess taking out the stress released the writers block.

The year has seen me and my wife move into a new home which we quickly made our own. The pre-moving part was pretty stressful and the stress didn’t end there. My psoriasis seems to have decided to move in with us and spread itself about so that will be another trip back to the doctor in the new year. On the upside though, we have a cordless vacuum cleaner which I have found very handy for those flaking moments. It may sound strange but it has made me feel a lot more comfortable as I don’t feel so guilty flaking over the carpet or sofa now knowing I can quickly grab it and tidy up.

I now have a kitchen where I have room to create and we can entertain friends and family. This helps reduce the stress levels as psoriasis takes a back seat in my head while I concentrate on getting dinner just right. As you may have guess we’ll be having Christmas dinner in our new home with some of the family. Even with my skin getting increasingly covered I am looking forward to this Christmas, it will be relaxed and fun and I have some great ideas for dinner.  WP_20150912_003

The winter isn’t too bitter yet so I haven’t been too sore and that thought of it getting colder does sit over me like a dark could sometimes. My joints have already noticed the slightly colder weather and I have more aches and pains than I have for a few years. The thing is this year, it really isn’t bothering me. Christmas is coming and as well as wishing good tidings to all I wish it to my psoriasis and arthritis. Just because they show me no good will, doesn’t mean I should do the same. After all, I don’t want to end up being like Ebeneezer Scrooge. Now that’s given me a thought….. maybe Psoriasis needs a visit from the ghosts of Christmas past, present and yet to come.

I have said before that I should be thankful to my psoriasis. It is true that it has introduced me to a lot of amazing people. People who have psoriasis in common, whether that be because they have it, treat it, research, support us, make the treatments or help raise awareness. Some of these people have become good friends and without psoriasis it is very unlikely our paths would ever have crossed. There is one other thing I can thank psoriasis for, especially with my skin as it is now, Psoriasis guarantees me a white Christmas.

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So to you all, I wish you Merry Christmas and if you don’t celebrate Christmas then I wish the best of health today and always.

Merry Christmas & a Happy New Year from Simon, Michala and Bob the cat.

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Where do we go from here?

It is strange writing a blog about psoriasis. It is something I would rather not have as part of my life. It is difficult to say exactly how much I detest the disease. Yes, detest, that’s a good word for how I feel about psoriasis. I have not had you in my life as long as others yet it is still far too long that we have been together. I want rid of you, hang on, is it possible to divorce psoriasis? Well it’s got to be worth a try as nothing else seems to work fully.

So I write about you fairly regularly. As I try to get you out of my life I seem to let you in more and more by making you the centre of much of what I do. The thing is now it’s starting to irritate me. As much as I push you away I’m clawing you back into my mind to tell the world just how much I hate you. It doesn’t really make much sense does it?

I can sugar coat our relationship with “It’s to help others” and “raising awareness”. The truth is I don’t think it is doing me any good to have you as such a big part of my life. If I continue this way, even if I became clear of you physically you would still be there. Still in my head as I continue to talk about you. Imagine if you met someone and all they did was talk about their ex. That’s a little how I feel we would end up.

Something has to give and this has been playing on my mind a lot this year, really since I last had clear skin. The blog might have to end. I might have to stop talking. I mean, I’m not even sure what else I have to say on the subject. All I seem to do is repeat myself and I do question whether anyone is truly listening.

I want to be positive and upbeat. I don’t want to mope around anymore and dwelling on the fears and insecurities that you have brought me only add to the suffering. If you won’t leave me physically psoriasis then you will have to leave me in other ways. Maybe we should “consciously uncouple”. We at least need to stop talking, maybe then you’ll get the hint that I don’t want you around.

Like many couples I have decided to take a break from psoriasis. We can be like Rachel and Ross, except if you see someone else I really won’t care. I will feel sorry for that person more than I will care about you seeing them. I will still be working on some projects so I am sure we’ll bump into each other now and then. For now it’s goodbye.

I hope you all understand that I just need a break. I often feel pressured into writing and it’s not the healthiest state for me to be in. Having recently moved I am engrossed in cooking in my new kitchen and starting a new adventure with my Wife. This is much more important to me that psoriasis. I will still be fighting in the background and am sure I will return to the blog one day. Just in case it’s not this year, Happy Christmas!

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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!

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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.

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Now anyone reading the title of this post who also follows Jessica and Psoriasis may think I’ve just nicked it. I have the same title as it’s about the same campaign. I was contacted last week and have read the details of this campaign with interest as it does highlight a very good point. The Psoriasis: Think Twice campaign is based on data collected by Leo Pharma which has shown that large number of psoriasis patients do not have regular visits to their GP to discuss their condition and have their medication reviewed. I have personal experience of this and I will admit that it’s not all the fault of the GP’s. I personally have thought for some time that Psoriasis is a condition that really needs to be controlled by specialists as GPs do not have enough expertise. My visits to the GP often revolved around me telling them how bad my skin was and what medication I wanted to try. Or I became lazy and just put in another repeat, at one point getting this doubled just so I didn’t have to do it so often or spend so much money.

The campaign also highlights the financial pressure put on patients and the economy. Many psoriasis patients buy over the counter and other lotions, creams and basically whatever we can get our hands on to go with our prescribed treatment. So as well as the medication not really being effective, some of us are also having to spend a lot more money. The burden on the economy is the cost of people having complications due to being on the wrong medication. The estimated costs of this is to the NHS is £500 million. There is more to this than just a financial cost, from the research it was shown:

“Lack of regular review highlighted by survey could mean that serious comorbidities such as diabetes, heart disease, high blood pressure and cancer are missed “

•  Psori  On the Psoriasis: Think Twice website there is more about Jess and her story along with 7 tips on speaking with your GP so you go to your appointments better prepared. Believe me, I wish I had known these when my journey started all those years ago. I am still learning and often forget to say things to the doctor. The campaign has also gained the backing of the British Skin Foundation who say:

“Skin d   “Skin decease can have a huge impact on all aspect’s of a person’s life, including self-confidence, career and personal relationships. One way to try and combat this is to ensure that patients have the best information and resources available to them to optimally manage their condition. Ensuring easily accessible advice and guidance is vital to prevent patients from becoming stuck on treatment cycles of repeat prescriptions where there  may be a more effective alternative. This is why we support the Psoriasis: Think Twice campaign”

                   For more information please visit the Psoriasis: Think Twice  website. It is there to help you take ownership of your treatment.

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MyTherapy App

A company called smartpatient recently got in touch with me asking for my opinion on a new app to help patients of long term conditions including psoriasis. As it is only on Apple at the moment I have not been able to use it myself and thought I would share it so anyone out there with an I-phone or similar fruity product can take a look.

The app is called MyTherapy and includes features such as:

  • A task manager so you never miss an appointment or skip your medication,;
  • A progress monitor so you can see what has and hasn’t worked and, most importantly, how much you are improving;
  • Patient diary, which can be used to log how you’re feeling on any day, how long it takes for treatments to kick in and how many times you use certain treatments.

I have been assured that patient information is not shared and are very strict about security standards. There is also a function to aid privacy so if you set an alarm for your next therapy, whatever it may be, you can choose to show the exact name of your treatment or just that you need to manage your therapy.

The development of the app is ongoing and smartpatient are happy to receive feedback to improve the app further. I have been really impressed with the insight I have had and in talking to the Natascha who is one of the developers. This is an app for the patient so you the patient are the ones who can help shape it.

You can download the app at the AppStore and you can find our more about smartpatient here.

Please note that I am not a developer of this app and should you download it please give your feedback directly to the developers. You can email Natascha directly on brucker@smartpatient.eu

 

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