Quality Care

Wowsa time just seems to be flying by! I have slightly neglected my blog as I have been busy working on some exciting projects and have been meaning to tell you all about them…

Quality Care is for a platform designed by Leo Pharma to bring patients, family, friends and healthcare professionals information, advise and support.

We have all spent hours on the net sourcing valid and trust worthy information, here you can do exactly that. All the information advise and support has been thoroughly checked.

Within quality care there is the Bloggers Universe, I am a resident blogger for this section, along with three other bloggers. We write blogs ranging from topics such as food, fashion makeup and lifestyle. When I was asked to be part of this I said yes straight away!  Its an amazing opportunity to be part of such a great platform. Here is one of my blog post Keeping skin moisturised for longer

Meet the rest of the bloggers, who also have there own blogs

Jess – Jessica and psoriasis

Simon – My Skin and I

Helen – The Flaky Fashionista

                                                    

 MyPso

If your one for downloading the latest App, then make sure MyPso is your next download. The app allows you to track and make notes on your psoriasis. You can log triggers and symptoms, take photos with the option to download the data to pdf form for you to take to your appointments and have more detailed discussion. I know many times I have gone and forgotten to mention something or by the time my appointment is due the flare up has calmed down, this way you can take photos and show your doctor.

Back in June I was invited to speak about my journey with psoriasis, along with Simon at the launch event for Quality Care. Its so refreshing to see how forward things have com. Being able to have open discussions and creating awareness as well as contributing to such great platforms of support and advise. At the event we were also joined by Dr Bewley and Dr Shah who spoke about the effects psoriasis has psychologically, it was nice to see how understanding and caring they were. Putting it out there that psoriasis is not just a skin thing!

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.