Every day

For various reasons I have been talking about Psoriasis a lot over the last couple of weeks. Mainly from meeting many new people and getting involved with psoriasis based projects. A question that keeps coming up is “Do you find you just forget about it now you’re used to it?” I could answer that with a simple no, to both parts of the question. No I’m not used to it, I don’t think I ever will get used to it. I have said before that if I allow myself to get used to it, Psoriasis starts to win. I mean, of course I try to just go through every day as normal, as if this is normal life, you have to, otherwise you would go insane.

The other part of the question, “Do you forget about it?” Oh how I wish I could. To go through a day without giving it a second thought would be a dream come true. This is how it works ever day with psoriasis:

• Have I moisturised?
• What cream shall I use?
• Given the cream I use, what shall I wear?
• Depending what I have to do that day, governs what cream you use. Needing to dress smart, it’s a body lotion, the ointments are too greasy and will stain my suit.
• Is it going to be hot today, do I need to wear light clothes that will cover my legs?
• Is it going to be cold, do I need to put more cream on to combat that?
• I’m popping down the shops, better change out of my shorts and put trousers on.
• Have I got enough creams and ointments, do I need to see the doctor to get more?
• How is my face feeling, do I risk shaving today or will it irritate?
• I want to wear my black jacket, how flaky is my scalp?

These are just a few of the daily questions you ask yourself. Every day I get up I have to think about psoriasis, I have to live with it, I have to treat it and it doesn’t end even when your skin is fairly clear. You still have to keep up the routine of moisturisers because it can come back and the fear of it coming back or a flare up means you never stop treating it.

Then when I sit and think about it in this way I feel guilty. There are worse conditions, more severe illnesses and hear I am moaning about my skin. I can still do most of the things I want to do, I just cover up to do them. But think of this, if someone put itching powder in your clothes every day of your life for several years, you tell me how you would cope after endless sleepless nights, not being able to relax, going through long periods of never feeling comfortable then add in the paranoia, depression and anxiety that comes with psoriasis

Psoriasis is a bully, it never stops taunting you so you never can just forget about it, if you do then it will jump on you and knock you back down. You get on with your life, you take a deep breath, you look at the beautiful things in this world, you keep fighting. You do this every single day, some days being harder than others. So to ask those questions again:

Do you ever forget about it? No, never.

Are you used to it? No, I would rather get used to having clear skin.

Psoriasis to be Highlighted on New Health Show

I have recently been made aware of a new health show being produced by Outline Productions which will be looking at psoriasis. It sounds like an interesting concept as they will be looking at home remedies that people use to treat their psoriasis. If you would be interested in volunteering for the programme, the details are below.

TV OPPORTUNITY

 

Outline Productions is making an exciting, ground-breaking programme that will explore the world of health and beauty home remedies.

Do you suffer with psoriasis?

 Are you interested in testing an alternative home remedy?

 

We are looking for volunteers based in London or within the M25.

 

Please contact volunteers@outlineproductions.co.uk

When emailing, please provide your name, age, contact details (including phone number) and your location.

If you take part, I wish you luck and hope some of these remedies will provide relief from psoriasis. I would be interested to hear from anyone who does take part, any new idea for treating psoriasis is always welcome.

This evening’s treatment

It’s strange sometimes that as your skin gets better it goes through a period of being sore. My legs are looking better, there are no thick patches of scale. They are at the point though where they are peeling almost like sunburn. It is that thin skin peel, like you could just peel the whole shin to reveal new skin underneath. The itching is just bearable but because it’s basically fresh skin, it is very tender so scratching quickly breaks the skin.

So after a big scratch earlier today I have had to refrain from treatment until tonight.  Even after waiting for the skin to dry and heal the broken patches it is very sore to treat. Five minutes ago my legs felt fine, I am now sat here with very sore legs as the dovobet soaks in. It annoys the hell out of me that while my skin looks better than it has done for months, there is no let up from the pain, the soreness or the plain uncomfortable feeling of sticky, greasy skin.

I can still laugh though as I sit here and think about the new life I am about to start. I am leaving the world of accounts behind to start a new career as a chef. I put that much grease on my skin, I bet I would make a tasty roast dinner. Oh and for those that say drinking alcohol doesn’t help my condition, I will ponder in that as I drink this glass of red. Cheers all and goodnight.

Where’s my head at?

Given that since the beginning of December last year I’ve almost gone every day with some sort of cold, bug, sore throat, ache or pain (for those that believe in it, I’m a Virgo), I decided to go and see my GP. My main reason was to get a referral for to see a dermatologist as this prolonged period of illness and cold British weather was playing havoc with my skin. One day okay, the next I would be red, sore and wanting to make like Baloo Bear and find a scratching post. (Who’s now singing Bear Necessities in their head?) Oh man I bet that would feel good actually.

The problem is that the weather and cold bugs I’ve been getting are causing my moods to swing more than Old Blue Eyes himself. It’s also been resulting in a certain person scratching himself a little too much, well a lot too much, to the point of drawing blood. Sometimes I’m not sure I know I’m even doing it, my wife certainly does and she has her unique ways of letting me know. It’s all made for this year not starting too positively and the mood swings have stopped me getting off my moody backside and pulling myself together. I think though, most sufferers of psoriasis would tell you that pulling yourself together isn’t as easy as said.

I know I’ve been moody. I can even see how I speak to people and how I act while in these moods. It’s like an out of body experience as I watch on but am helpless to stop it. Luckily I have friends and family who will tell me when I’m being out of order or just plain off with people. Sometimes they’ll just steer clear of me and give me the five minutes I need for my brain to re-boot and take proper control of my emotions. It’s a very slow count to ten when I get in these moods and I can hear myself talking to me and telling me I’m being stupid and childish, to calm down and start again with whatever it was that I just lost my rag with.

Getting back to my GP and the referral, all was good for about two days as getting the referral sorted is a move forward, a step against this condition so you feel all good about yourself. Very quickly I became that moody changeable person, bitterly cold weather and then a very nasty bug that floored me for two days which I’m still recovering from just don’t help you stay strong. My energy was gone and my resolve was looking very fragile. Then along come the strange thoughts that you get when you overthink. It’s not difficult to overthink about psoriasis for me as it currently occupies every waking second of every day of my life (could do with the lights diming and a bit of dramatic music there).

There are two main thoughts that have gone through my head. The first was actually to think, how about I don’t medicate over the next four weeks until my derm appointment so my skin looks really bad and I get the treatment I think I need. Yes, bit of a mental one there. Yes I actually did contemplate stopping my meds to show really bad skin to my derm, partly this was because I had a sudden clear up and it didn’t look too bad and I thought they’ll just send me on my way saying it’s not serious. What you can’t see on me at the moment is that the healthy looking parts of my skin are also extremely itchy and irritating. They also can’t see what this condition is currently doing to me inside, maybe I should just take a lap top and show them my blog, although I could see me being taken to a nice comfy padded room if I done that.

The second thought I had was a bit odd for me. I make no secret of being an atheist, I actually told my mother when I was seven that I thought the bible was a good story (yes I’ve read it) and then want to explain the theory of evolution. I’m not against religion, I just don’t’ get it and this condition actually gives me arguments for and against. Psoriasis is so unrelenting in the way it attacks your skin and mind , leaving you depressed, full of anxiety and with low self-esteem that I understand why people would turn to religion (of any sort) for support and answers. On the other hand I think if there is a God, would he or she really do this to people and if you start the “It’s a test” argument, I’ll take all my psoriasis rage and clout you. That’s one thing I really don’t get, along with the rest of the evil that goes on in this world. Anyway, I’m not really here to argue about religion, I’m just trying to explain where I stand on the subject. My recent though was that if there is a God, which means there’s a heaven and then there must be a hell. This condition has me so desperate at times, I think that should there be a Devil, I would like to offer my soul in exchange for clear skin. Yes that’s how desperate this condition can make you. So if he’s out there, the offer’s there, oh and if there is a God, please explain to me what the hell (ha ha) I’ve done to deserve this.

Please don’t start arguing religion with me, I don’t want to get involved. We all have our beliefs and I respect that, I have friends from many religions. If you want to say a prayer for psoriasis sufferers, that’s most welcome and thank you, all the same if you want to raise a glass of Jack Daniel’s in the church of Inn keeping, that will also be welcome too. Like I said, we all have our religions.

Mugged by psoriasis

I had been thinking of a new piece to write about psoriasis, looking at something a bit more upbeat, possibly humorous (well what I consider funny anyway). I did start writing something the other week, oh you’d have laughed, it was hilarious, honestly. Actually I can’t even remember what I had started to write as since then I have been dragged back to that precipice of despair and aguish.

After a pretty crap skin month in December I was starting to recover a little, in fact my skin still seems to be clearing up on a daily basis. That seems to be only in appearance though as my skin feels like I have a million insects crawling under it, it burns, itches, is painful, every last inch of it. To look at me you wouldn’t say I had a skin condition (as long as my elbows, legs and back stay covered). It seems at the moment that the better my skin looks the worse it feels.

This has been annoying me as I can’t sit still and haven’t been sleeping well. I find it hard to concentrate at work, I’m irritable, snap at the slightest thing. I have asked for a referral back to the hospital recently as I went to see my GP in a rather sorry state. When asked what was up, I answered with one word “everything”. I had nothing left at that moment, it’s all I could say, it’s how I felt. I know that not everything is wrong, it’s the state of mind psoriasis gives you. The one thing I do feel though is that I have given up. After all this time fighting this condition I am starting to feel like it’s won. I wrote about a war with psoriasis that I was winning, well psoriasis just performed a stealth attack on me and has floored me.

It’s being in a constant state of unease, of not being able to relax anywhere that was getting to me. My skin is clearing but  it itches like hell and as if that wasn’t enough my psoriasis does one more thing to push me over the edge. As I sat at my desk at work, I felt like there was something on my scalp, just above my ear. I put my hand up and felt something damp, seeing my hand I saw blood. This wasn’t blood pouring down my face, nothing that dramatic but it was the final straw and I broke, badly. I didn’t know what to do, who to turn to. All these years of dealing with psoriasis and I suddenly forgot how to deal with it.

I spoke to my boss and minutes later I was walking out of the office, shaking, trying to keep hold of my emotions. I didn’t stop to speak to anyone, head down, heading for my car. I didn’t think about what was happening as I had to drive, all I wanted was to be home. It was only once I got home I let go, my resolve shattered and I was a mess of emotions. There’s despair, anguish, anger, a lot of anger and confusion. I’m still angry now and I don’t understand what is happening anymore. Why now does my skin decide to spontaneously crack and bleed. I don’t even consider my psoriasis to be that bad, certainly not like it was at it’s height when bleeding skin was a daily occurrence.

I think it maybe shocked me too. I thought I had this thing more or less sussed, I knew what the game was and how to play it. I didn’t know that psoriasis decided to play it’s joker. I spent the rest of that day overdosing on moisturisers, I soaked in balneum bath oil, washed my hair with a rich moisturising shampoo, poured balneum over my scalp then everything went on. Anything I found went on my skin before I started to feel normal again. Ha, normal, at this point I’m now sticky and uncomfortable, but at least it’s not an itch.

All this recent episode has taught me is I can’t keep plodding along thinking I’m in control. Psoriasis has mugged me while I wasn’t looking and put me back on the edge with just a think rope holding me up as I wait for the next appointment with a consultant. The war has definitely swung in favour of psoriasis and I’m not sure I can win anymore. The little hope I have is that as I have found with this condition is tomorrow I could be itch free and kicking it’s arse again.

One last comment which is to thank my very understanding boss.

Scientists use DNA to discover new genetic clues that increase risk of psoriasis – National Psoriasis Foundation

Scientists use DNA to discover new genetic clues that increase risk of psoriasis – National Psoriasis Foundation.

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 2,400 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 4 years to get that many views.

Click here to see the complete report.