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!

Life’s An Itch

1047_Lifes an itch log0_FA-01

Psoriasis itches. Is that stating the obvious? It will be to anyone with psoriasis and I would imagine anyone who has ever had a dry skin condition would have probably assumed that psoriasis itches. If you’ve had sunburn so it peels you can probably relate to it also. So why am I telling you that it itches? Surprisingly, many dermatology professionals do not think that psoriasis itches or think that itch is not as bothersome as patients say it is. Excuse me? I have the itch, I think I know exactly how bothersome it can be. I am the one after all who has had countless sleepless nights due to itching. I am the one who has scratched myself until I bleed because the itching just won’t stop.

I do find this kind of funny though as I have posted before about the definition of psoriasis. The word psoriasis comes from the Greek word psōra, meaning “itch”. So the name given to the condition basically means itch. Why would a condition named after itch not be itchy?

This is only one part of having psoriasis. It is for many though the most irritating and misunderstood part. So a campaign has been launched to raise awareness of how itch affects people’s lives and what itch means. Life’s An Itch is a joint project by The Psoriasis Association and Celgene and fully back by The British Dermatological Nursing Group. It started a while back with a meeting of healthcare professionals and bloggers of which I was lucky enough to be part of. We were asked to submit words to describe what “Itch” means to us and the results produced this brilliant artwork. 210715 Final imageYou can add your words and help the campaign grow. Just visit the Life’s an Itch website and submit your words. It is completely anonymous and more artwork will be created from how we all feel about itch. You can also take a look at the word cloud to see what others have said. As it is anonymous I won’t reveal which words I submitted.

If you don’t have psoriasis, please take a look and maybe it will help you understand a little more of what psoriasis patients go through every single day.

The Wedding Guest

Going to any function when you have psoriasis can often bring on bouts of anxiety. It’s not just thinking about what to wear to cover your skin or whether you feel brave enough to bare your scars. For me it is more about what to put on my skin. Yes, men get these worries too and so many of us choose to ignore or not discuss it because it is not perceived as something men should do. Even if you discuss it with yourself in your head it’s good for you, don’t feel you have to “man up” and just grin and bare it.

As a guest at a wedding later today I have spent what feels likes a month deciding what to wear. Well I knew I was going to wear my best suit, it’s what it’s there for. I have been preparing though. My scalp has been a bit flaky so there’s been some intense treatment to calm that down. I have just purchased a navy blue trilbury too so I have to be flake free. I don’t want anything to show on my hat or the shoulders of my jacket.

Then I had to think about a shirt because I have to think about is my skin irritable, will it be hot. Luckily it seems the weather has gone cooler so I have gone with an Egyptian cotton shirt. It’s soft, not too tight fitting, even though it’s tailored, and it’s thick enough that if warms up a bit I will still be comfortable without a jacket.

What next, ah yes, my legs. These are the worst part of my body. Obviously no shorts today but going back to the suit I will explain why this causes concern. The suit is from Savile Row, the iconic British Street which is home to some of the best tailors in the world. So yes it wasn’t very cheap and as you would expect it is made out of a very good material, material that would not get on well with my greasy ointments. A few months ago this may have cause me a lot of anxiety as my legs were pretty scaly and I would have to seriously consider wearing a different suit.

I have had a bit of luck with how to prepare for the suit though. Firstly, I woke up at 3 am this morning and have struggled to get back to sleep. This is not actually due to my psoriasis, this is more that my head is flooded with thoughts of the new house my wife and I took the keys for yesterday. So exciting times are ahead and the most stressful bit is out of the way. Why is it lucky I woke up so early? Well as I couldn’t sleep I thought I may as well put my Dovobet gel on now as it will have a good number of hours to soak in and work its magic before I need to shower. I have been making sure I keep my treatment regular this week also.

Also recently I have been lucky enough to receive a few gifts in the post recently.  One being a tub of Hydromol ointment. It is the waxy oily kind of ointment and I find this great to slather on before a shower. I wouldn’t put it on before getting dressed as it wouldn’t be comfortable but as something to seal in moisture and protect your skin whilst showering it is perfect. Even washing doesn’t dry your skin out if you put this on.

The other gifts were from Galderma who sent me some of the products from the Cetaphil range. I have been using their Restoraderm Skin Restoring Body Wash and have to say it probably is the best body wash I have used to date. You don’t need a lot, you feel clean and you don’t get that dry tight feeling after you shower. Even without the routine above of coating my body with Hydromol, it still works well.

After this I use something I have been wanting a long time. It is a new product they have called Moisturising Body Mousse. What can I say? It’s brilliant. Again you don’t need a lot to go a long way and it is great if you have a few patches of psoriasis rather than total coverage as you can use this all over. It’s not just your psoriasis patches that need moisturising, you do need this all over and the mousse is excellent. It is really light and soaks in quicker than anything else I have come across. This means you don’t feel like you need to let it soak in for half an hour or so before getting dressed. You can put it on and in seconds feel dry enough to dress.

Also, the mousse isn’t greasy so when you’ve got a fine suit or that special item of clothing you want to wear there is no worry. If you have severe psoriasis thought his really won’t be the product for you. So that’s the suit sorted then. No staining, no stickiness, I can wear my suit and not only look good but feel good.

So that’s how a man chooses both what to put on his skin and what to wear to a wedding. A wedding where the invite is to my wife and I. Psoriasis has not been invited. I might post a pic once we’ve been to he wedding.

For more info on Hydromol please visit http://www.hydromol.co.uk/hydromol/home/ You should be able to find a 500g tub of the ointment is around £8.00 in most chemists.

For information on Galderma ranges including Cetaphil please visit http://www.galderma.co.uk/ Please note that the mousse is a brand new product, it should now be available in most Boots stores. RRP £13.99.

Conditioning the mind

Those who have had psoriasis or psoriatic arthritis for some time will know about getting into a routine and having the right mind-set to fight both conditions. You need to train yourself into applying creams at certain times, trying to make sure you follow your treatment plan without fail no matter what. Learning how, when other things get in the way, how to adapt your routine.

You also need to find something inside to give you the resolve to keep fighting, to get up every day despite how tired you feel and keep going. Your mind is the key here, it just needs conditioning. I only mention this as I have heard it said or heard people saying similar things. This is great, yes it’s true we do need to get the right mind-set. However, psoriasis and psoriatic arthritis also try to condition your mind.

This has struck me recently as my skin is doing better and my arthritis is not aching as it has done. In fact, apart from my hand, the aches in the rest of my body have been either non-existent or very mild for some time now. The only thing is I can’t get out of the routine that both conditions got me into.

When my skin and joints were particularly bad, if I woke during the night or early in the morning I would have to move. My back stiff or knees and shoulders aching, skin itching. I had to move as the pain of laying there was too much. With itchy skin the first thing you feel when you wake, again you just feel the need to move. Partly so as not to disturb my wife who would be sleeping beside me. Oh and that’s another guilt trip psoriasis plays on you. You’re the one with the chronic illness, the one who can’t sleep properly and feels tired most of the time and you’re the one who feels guilty about waking your partner.

Anyway, where was I? Yes, waking up aching and itching would always lead to going downstairs, trying to get the joints moving and finding the painkillers in a hope sleep may come back. By this point though my brain was usually wide awake and going through the depressing dark thoughts I often had when my condition was particularly severe. Most of the time sleep would not come and I would end up watching tv and surfing the net and mainly noticing that most of the people on twitter at that time were chefs. This only led to raising my admiration of chefs and others in hospitality with the early starts and rarely would I see them complaining. More, you see the love and passion for their work. I know there are other early starters and workers, the night-shifters. These are usually busy working rather than on their way in to work to be able to tweet.

Back to present day. I have been up since 5.50 a.m. and it is now two hours later and I have not found sleep. Not because I’m itching, tired or aching. It’s just something I do now. I actually laughed at myself earlier when I thought about this, thinking if I feel okay why didn’t I just roll over and go back to sleep. Psoriasis and psoriatic arthritis have trained me not to go back to sleep. Annoying because come about 5 or 6 this evening I know I will be feeling very sleepy and by about 8 or 9 I will probably go to bed. My day gets shifted a couple of hours forward. Great to get a head start on the day but when no one else is awake I can’t really do much except write a post on my blog. So you can guess when most of my posts are written.

The challenge now is to see if I can recondition my brain to not wake up so early or, if it does, to go back to sleep for a couple of hours. Somehow at the same time, I have to keep the treatment and fighting mind-set so it is just one bit that needs re-tuning rather than whole re-set. But then, if I do manage to recondition my head, when will I write my blog posts?

Continue Reading »

Late 2014 I was invited to the offices of Aurora Healthcare to take part in an interview about psoriasis. It is a frank interview with no preparation as to what the questions would be. I hope that watching it will help people understand what it is like to live with psoriasis. If you do watch it, thank you for taking the time.

Alternatively you can watch this via You Tube as below:

SD version

HD Version

Mobile Version

Please note, the video was funded by Novartis.

Changing the routine

Following UVB light treatment last summer, which unfortunately only gave me about a month’s clearance, the last 10 months have been all about control of my condition with varying degrees of success. The first few months were fine but then a slight flare up around February this year led to more patches appearing and the fight against flaking starting again.

I went through numerous creams and ointments, trying new things, bathing and so on. Then came the idea to move house (which annoyingly still hasn’t happened yet) so there has been added stress since April. Add in a health scare, which has turned out to an infection of which I am now clear, May and June were particularly stressful.

Some who read the blog will know I tried a new product, Philips BlueControl LED. I had high hopes for this and have to admit defeat. That is not to say that it does not work, it just didn’t work for me, As the name suggests it controls psoriasis and if you add stress and bad health into the equation it could prove not to be as effective as it should be. I did go through a couple of weeks not using my topical steroids whilst using it and my skin got no worse. Effectively it kept my condition stable so this does show that is has some kind of effect.

I do feel I may have been a little unfair to BlueControl as I have quite a few patches, 7 on one side and six on the other side of my body (plus other spots here and there. With each treatment session taking 30 minutes this could mean trying to find up to three and a half hours each day to take the treatment. So this just didn’t fit into my work and home life. It should not discourage others from looking into it and giving it a go though.

So how have I managed to start clearing my skin. Well the stress levels have certainly not dropped. We have not yet moved and are becoming increasingly frustrated with how long everything is taking and I was only given the all clear by the hospital yesterday that there was no serious underlying issue with my health.

My routine has been this:

Shower every day, bath 3-4 times a week. I know, water dries your skin out and people with psoriasis often shy away from showering or bathing too often. When showering I have been washing my hair with Alphosyl 2in1 shampoo and also using it as a body wash on alternate days with Dove deep nourishing body wash. Yes, Dove that you buy off the  shelf and isn’t medicated.

When I bathe I put a drop or two of Alphosyl in the running water along with a good squirt of Aveeno body wash, also using Aveeno to wash with.  Once or twice a week I will also slather on an emollient before getting in the bath. Generally this will be Diprobase or Boots Derma Care moisturising cream, something thick and rich. In the bath I regularly add in a mix of dead sea and Epsom salts.

Once out of the bath I put a light lotion on so I don’t feel too sticky and currently have been using Aveeno moisturising creamy oil as this soaks in really well. After that goes on either Dovobet Gel (Ask for the gel, it’s so much better than the ointment) or Dovonex although usually Dovobet at the moment. Also applying the same in the evening a couple of hours before bed At the weekends I do something that I am not sure is right but it is working. I will put on the cream, then Dovonex and follow this an hour later with Dovobet. It was using the two products in conjunction lie this which really started to make a difference.

Now I am not sure if using a shampoo as a body wash and using two prescribed treatments together is correct or would be approved by my derm. The thing is when nothing else works, we become desperate and from desperation comes invention. This is nothing really harmful in Dovonex and it is not a steroid so I thought, what the hell. I am sure I am not the first psoriasis patient to use treatments in places they are not meant for. Please note though that as I ma not a doctor, I cannot recommend you do the same, I am writing this to make a point. The lack of effective treatments leads to us making or own.

I may as well add for my scalp I am using Betnovate and dab a bit on my fingers to do the inside of my ears. So there you have my current routine. Sounds like a a lot but in the morning I am showered and creamed up in half an hour. I always have a moisturiser and dovonex with me in case I need a top up during the day. The difference it has made is this:

9th May

9th May

The picture about is from the 9th May, you can see flaking and scaling which has been constant up until three weeks ago when I changed to the routine above. Below you can see the same leg is still red but has no flaking or scaling.

26th June

This may not look like a massive change but to a psoriasis patient it means a lot. No flaking means a lot less itching and no itching means restful nights, reduced stress and much less discomfort. I still won’t wear shorts but at least I’m not spending all day scratching, feeling tired or worrying about the pile of flakes I am leaving under my desk at work.

Money saver notes:

You can get this in double packs and my GP found he can then give me two of these on your NHS prescription so you get four bottles instead of the normal two.

Look out for offers in Boots if you want to try the creams I mentioned, they are often on 3 for 2 or other deals. Bulk buy when on offer.

The most cost effective bath salts I’ve found are Westlab, £4.99 for a kilo bag. They also do Himalayan as well as Dead Sea and Epsom. .


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