Life’s an Itch

Does Psoriasis itch? Yes, and can be very distressing.

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So why am I talking itch? Well, many healthcare professionals believe it doesn’t and has low or no impact at all. They obviously have no idea! (I have been tempted to throw itching powder at a few of my doctors in the past who have dismissed the itch)

For me the itching can get really bad leaving me feeling exhausted and stressed out. On many occasions I have ended up scratching so hard that I have ripped my skin open, with blood every where, not to mention triggering trauma to my skin causing a flare up.

So when I was asked to take part in this fantastic campaign I was more than happy too.

Life’s an Itch  is a campaign bought together by The Psoriasis Association and Celgene, also supported by The British Dermatological Nursing Group.

“A campaign to raise awareness about the real impact of itch for people with psoriasis”

I was asked to submit words that describe what ‘Itch’ means to me, along with other Psoriasis Bloggers…and this amazing piece of art work was produced.

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Get involved with Life’s an Itch and create more art work like this!

Pso it all started when I was 13

It started when I was 13 years old, I felt small spots on my upper back and neck they were raised and red, almost like a heat rash. I showed my mum as I couldn’t really see properly; she too thought it was heat rash. Within days it speared to my elbows and knees and we knew something wasn’t right as it no longer looked like a rash.

The spots had started to pop and had a ring of dry pealing skin and it was incredibly itchy. My parents took me to see our GP straight away as it started to spread on my legs and arms. I was diagnosed almost straight away, my GP had a dermatology background and soon as she saw my skin said it was psoriasis. She did however ask another doctor to come and have a look to confirm the diagnosis. I still remember them saying “you have psoriasis, and there is no cure you have this for life!” 

I remember feeling numb and not quite understanding what they were saying, almost like I couldn’t hear what they were saying to my parents. It still haunts me to this day, hearing I have a condition that has no cure.

I was referred to a dermatologist straight away, by the time my appointment came through I was covered head to toe in psoriasis. To be honest the wait wasn’t that long, a few weeks at most.

I couldn’t understand what was going on; my skin was on fire and hurting like made not to mention how itchy it was. But I kept a lot of this to myself; I didn’t know how to express how I was feeling. Soon this way of dealing with it became normal. I put up a front and carried on like nothing was wrong!

I was a young girl when my whole body was covered in Psoriasis. One minute I was fine, happy carefree and the next it was all out of control and I bottled it all up. I became withdrawn behind closed doors, crying myself to sleep every night. Hours and hours questioning myself “what have I done wrong, why won’t this go”

At the time I didn’t realise but looking back now, I had a temper that was volcanic. I would break out in a rage and punch my bedroom walls, break glasses, my insides would ache in anger but I never let anyone see this side of me. Occasionally I slipped up and my parents would notice I was not my happy bubbly self and tried asking but I brushed it off.

One day I just couldn’t hide it from them and cried and cried, screaming and saying it hurts and I want it to go away. They were so upset to see me this way and I couldn’t handle seeing them so upset, so I decided from that day onwards I would never show them I can’t cope. But I knew it wasn’t really working I could see it in their eyes they worried. I was hurting and in pain and I wanted to protect them and just wanted them to see the daughter they knew before all this, chatterbox full of happiness and smiles.

School was really hard.  I was bullied, called names, rice krispy, pizza face things like that. My face was covered in psoriasis, not like I could hide it! For some reason it didn’t rise to it, I was too tired fighting to cope with psoriasis, and had no energy to deal with the comments.

I always feel really disappointed in my teachers; I received no support from them at all. When I started high school I was fine, then all of a sudden I’m covered; they can see, but never once did they ask if I was ok. Oh the excuses I made up not to do PE and Dance, you would have thought that this might have set off alarm bells and prompt them to find out what’s going on!

The years just seem to pass by with no signs of the psoriasis clearing. Part of me held on to hope one day I would wake up and I would have clear skin, the pain and suffering would end and I could live the rest of my life normally…that day hasn’t come!

I have server plaque psoriasis and it has never fully cleared, I have tried so many treatments, topical, light treatment, systemic, biologic and also alternative therapies like acupuncture, reflexology, diets, home remedies the list goes on, and I guess it won’t stop there….

In 24 years of having psoriasis I have only had few months here and there of almost clear skin. I have never managed to clear all of it. So far the best treatment that I have done well on is the biologic injections. Currently I am on Stelara but am at the point where I have become immune and starting to flare up again. I am having discussions with my consultant to see what available next is, fingers crossed!

My biggest fear is having a massive flare up as I am not strong as I used to be in fighting it off. My body is exhausted and it really takes it out of me.

I have come a long way from the dark days where I closed up and wouldn’t share with anyone how I feel and what it’s like to have a chronic condition. I now focus on helping others not to suffer in silence.

PSORIASIS ASSOCIATION CONFERENCE

 

On Saturday 9th May 2015 Psoriasis Association held there annual conference at the beautiful Whittlebury Hall in Northamptonshire.

It was a pleasure to be invited as a guest speaker at the conference.

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I spoke about co-management of Psoriasis and Psoriatic Arthritis. Diyen my partner came along too, he filmed me speaking, and I have to say it always hits home harder when I hear myself talking about my journey. I know it’s all happening but I guess because I am living the moments every day I forget how tough things can really be sometimes. Maybe it just goes to show it is who I am and the way I deal with these chronic conditions is normal now.

But I always question “what is normal” everything is always changing and I am exhausted trying to keep up with it all.

Anyway back to the conference, this was the first one I have attended and I have to say it was very good, lots of new information and advice. Also an opportunity to meet other sufferers, share advice and experiences.

It was great to catch up with Victoria, founder of Psoriasense, we have had the pleasure working on a few projects together.

Some interesting topics were covered

  • Social media
  • Treatment decision making and psoriasis
  • What role does diet play
  • Co-management of psoriasis and psoriatic arthritis

When I was first diagnosed with P, 24 years ago information was very little and no support groups at all. It’s refreshing to see how much support there is out there now. A big thank you has to go out to those who suffer and share their stories and create awareness.

NO MORE SUFFERING IN SILENCE

Diyen knows a lot about the conditions and how hard things have been for me, he also found the information extremely beneficial. He also struggled to understand why so much is missed by consultants and why referrals are not made by GP’s, actually he was extremely annoyed! Since then he has been asking me a lot of questions, I think his making sure I have all the support I need.

If you haven’t had a chance to attend the conference I highly recommend you do! I know many of us touch base via social media and the Psoriasis Association Facebook group but meeting in person would be great. I always look forward to meeting fellow warriors!

Oh and the goodie bag is amazing, some great products to try out!

Some great samples to try