Here’s my psoriasis pledge what can you pledge?
It’s the time of year where students are about to begin their university adventures, here’s my advice for those living with psoriasis who are beginning their courses, I hope it helps and good luck.
Leaving home and attending university was a task I found very challenging as I was both excited and nervous to find out what may be ahead. Knowing I was moving away from my comfort zone to mix with new people wasn’t something I found difficult however having psoriasis made this ten times harder.
My mind was all over the place before I moved away as I was more or less covered in psoriasis at the time I was to move and knowing I would shaking hands with people and introducing myself was becoming a nightmare. Knowing how to explain psoriasis and what it is can often be a difficult task because making other people understand how psoriasis can come and go, change peoples self esteem and the way they feel about themselves is often misunderstood.
My experience of moving away to university was positive, people excepted me very quickly and I felt at ease to bring up my psoriasis very early on. Talking to people about psoriasis I see is a very positive way to educate others, you will often find that most people won’t change their opinion of you due to your psoriasis and it is not an issue.
Here’s a couple of pieces of advice from others for people living with psoriasis who are starting university…
I was honest with my roommates about it. It was a tough conversation but made it easier.
To be open with people about what it is&lead with the fact it’s not catching. They’ll be far more understanding than you think.
My personal advice for those who are moving away to university is first to explain what psoriasis and be truthful about how this impacts you, if there are times when your skin is sore and you want to time to relax and treat it give your self some time alone and let your friends know you are fine but need time to chill. Find a doctors surgery on campus or near by and visit to ensure they are aware you have psoriasis and they understand how your psoriasis affects you, whether you have a small patch or are completely covered it can affect us in different ways. Depending on the severity of your psoriasis you may be best to inform student services on site and see if they can support you in any way there may be support available you are unaware of.
Preparation can be key for dealing with difficult situations be ready for what is ahead and be positive.
For more information about dealing with psoriasis at university visit the psoriasis association for teens page http://www.psoteen.org.uk/pages/view/deal-with-it/school-uni-and-beyond
Good luck, Jess x
Many people have found my blog through an article on the BBC Newsbeat page, which was produced through an interview with BBCs Tina Daheley.
Last week I was given the wonderful opportunity to travel to London to take part in some radio interviews to talk to about my experiences of living with Psoriasis and also talk about an exciting new project in which I’ve been involved.
I have been working in partnership with leading health care professionals and Leo Pharma to develop The Psoriasis Think Twice campaign. The aim of Think Twice is to raise awareness of psoriasis patients that are stuck in the cycle of repeat prescriptions or who aren’t receiving the best support and care for their psoriasis, as well as providing useful resources to enable this to change and patients to become in control of their psoriasis.
This was something I found as a great opportunity as it gave me a chance to change what may have been negative experiences for me into positive experiences for other people living with psoriasis.
One resource for me which is so important is called 7 Tips for 7 minutes, which is a resource for patients to use when attending their appointments with health care professionals in order to help give some suggestions as to what questions you may like to ask, what you may need for your appointment and a place to write some extra things you may like to have as preparation. One thing I have learnt over time is never be afraid to ask your dermatologist questions, this links back to my previous post! I like to know how I should be using my treatment, why this is the right treatment for me (why it is the best option) and also what if it doesn’t work? People may think this is a negative question however it is very reassuring to know that this isn’t the only option. These questions could have changed my whole experience of psoriasis if I had known to ask them earlier. This is why a tip sheet for me is a very important resource. ( The link for the tip sheet is on the Think Twice website.)
When in London I took part in a number of interviews with a dermatologist called Dr Anthony Bewdley, it was a great to have a chance to answer some questions about my experiences and also learn how things are changing to ensure patients are receiving sufficient care.
One of the questions I was continuingly asked was why do I think it is important for paitients to make sure they have regular check ups, and I personally believe continuous appointments with a health care professional allows you to be in control of your psoriasis and get the right support you need and if this isn’t the case then something isn’t right. Don’t be scared to ask for a second opinion or questions the treatment you get given. To be happy and healthy the treatment and care has to be whats right you and your lifestyle.
Please make sure you have a look at the Think Twice website.
There are some wonderful resources on the website including a wonderful video called Exposed by a lovely person called Rena. I found this video useful when trying to explain how I was feeling about my psoriasis as it meant I didn’t have to talk I could let my parents and family watch the video.
Looking forward to hearing from you all.
This week I received an email asking if I was aware of the Boots Health Heros awards that are currently taking place, the awards give people who live with long term illnesses or that have been ill or just have someone special who helps them with their care a chance to nominate anyone from a health care professional to a family member to say thank you for all their hard work, help and support when it has been most needed. This got me really thinking as to who I could nominate and just how many people I could nominate. My parents and my brother would come first as they have really supported me and believe me at times I’ve pushed them to their limits when I have struggled to cope with my psoriasis, however for me they stayed composed and strong in order to keep me going. You can begin to breakdown just how lucky I have been, with my parents especially as they have taken me on numerous occasions to hospital appointments, researched things they could do to help and just generally support me with my day to day living, the bit which most people never really see!! But i am also lucky to have a great group of friends who always know how to pick me up if I’m feeling low and never would treat me differently for my psoriasis.
However for these awards you can only actually nominate one person and for me that person is my Dad, having suffered with psoriasis himself he can understand what it feels like to have your hands bleeding because they are cracked and the uncomfortable feeling you get from not being able to cover them. Although not only has he suffered himself with psoriasis, he has been at my side the whole way through my own psoriasis battle from putting my creams on for me when I was younger, taking me to hospital appointments to sitting in my front garden in the middle of the night when I couldn’t cope with living with my psoriasis and alongside this carrying on with his full time job. He truly is one in a million.
I would really urge everyone to nominate someone who they class as their Health Hero as a way of saying thank you for all their support, you never know they could be the winner. You can enter via this link http://www.boots.com/webapp/wcs/stores/servlet/ProductDisplay?storeId=10052&productId=1469281 Entries should be in by the 20th May, good luck!
Hello all, I trust everyone is well..
I thought it was about time I took back to my blog to give you all an update on my life at the moment.
Last time I wrote I was beginning to take a new tablet as I had stopped taking my cyclosporine, I was given Myfenax to take how this sadly has had no impact at all on my psoriasis therefore I currently in a time frame of trying options and waiting for new treatment. It has been suggested that I next try Methotrexate and if that fails we will look at biologics. I have tried to avoid Methotrexate as I had heard about different side effects including affecting pregnancy and fertility so if anyone uses this it would be great to hear from you. I always find looking at new treatments very hard to draw a conclusion from as there are always so many ways of looking at things and different things to take into consideration, however my hospital have this wonderful poster on the wall which gives you some ideas of questions you may like to ask and reassurance as to the fact you are entitled to ask questions! I’m sorry the picture is not that great but you may find this helpful!
There is also a great resource this week called the Manchester Shout Out which involves lots of great people from dermatologists, the psoriasis association and psoriasis fashion blogger Helen. If you are around Manchester or can get there this could be a great help for understanding and living with psoriasis. Have a look at the website for the schedule
http://www.psoriasisshoutout.co.uk — if you attending this event and would like to write a blog post for me please email email@example.com
Until next time, Jess
Wonderful story about a rare type of cancer, I have been asked to share this…
So firstly I should start by wishing everyone a Happy New Year even though it’s a little late I hope everyone had a wonderful festive period and is enjoying the beginning of 2014..
My year has been great so far in the first week I turned 21 and i’ve been enjoying myself spending time with my friends and family. Although I’ve been enjoying myself and everything in my life is good, my psoriasis has been causing me a little anger and alot of pain.
I stopped taking my ciclosporin before christmas and my psoriasis made the most of returning very quickly and following this cracking an awful lot and making my life very painful to the extent I had to slow down what I was doing and give myself time to breath.
When my psoriasis flares up I tend to find myself in the same routine getting angry at the fact I have it, spending my time trying to justify that its ok to feel angry and in alot of discomfort as my psoriasis tends to attack my hands first. When I give myself time to breath and reflect I can generally bring myself to my senses quickly and realise that things could be worse!!
The problem I generally have is that for the last few years I have used ciclosporin to clear my skin using it in periods, and it works fantastic for me personally and I can clear my skin completely at times however a year ago I got my first full time job and I have found it hard to combine using this treatment and going to work. Ciclosporin gives me great results with the consequence of me feeling rubbish. I normally get headaches and feel sick which makes going to work hard but I try and do my best. The problem I have is that the treatment works great to clear my skin which is great but taking the tablets is a challenge in itself. I hate my psoriasis so I take the tablets that clears my skin but leaves me feeling ill!!
I am currently looking at maybe trying a private route to see if it is possible to try UVB again but at a time that would be suitable for my job as I truely feel I have to try a good routine and make sure my psoriasis doesn’t take over my life like I can let it do at times. I have an appointment with my current dermatologist ( who’s great) on Monday and I am going to discuss with him looking at possible other options that may work as honestly is the best policy even if you dread the answers you may get.
I have really struggled over that last couple of weeks psoriasis and I’ve had so much support over twitter. It’s hard to describe how I feel at times, I tend to question an awful lot but I know that I have to keep working hard to challenge my psoriasis and making sure that people are aware of the impacts psoriasis can have upon someones life.
Making decisions around things such as jobs, whether you have children, other illnesses etc can really make it difficult to combine everything but you have to make sense of what is most important, for me I know if I don’t treat my skin there comes a time when I stop functioning and I become feeling low therefore the most important thing is to find a treatment that doesn’t affect my job, luckily for me I have a great boss who’s very understanding which makes life much easier.
I would love to hear about anyone elses experiences of psoriasis and work, you can leave a comment on here or email firstname.lastname@example.org
Until next time Jess xxx