Despite advice from a media savvy friend that one should do so, I’m not the type of person who reTweets anything that praises me. I just reply and say thank you. I am not sure what is to be achieved by yelling out to cyberspace that someone likes your work. It comes across as either needy or narcissistic and I don’t want to be either of those. You wouldn’t go up to somebody in a pub and say “Look, John from Doncaster thinks I rock and @twinkletoes says I’m hot and funny”.*
(*in the interests of full disclosure, those were made up names and comments – NO-ONE has ever Tweeted that I’m hot and funny).
So with that in mind, I post the words below NOT because they say once things about me but because the Manchester Psoriasis Shout Out was designed to highlight to people with this condition that they are not alone and that there are resources and methods that help. From the feedback below, it seems we did our job. So if anyone reading this does feel isolated or at the end of their tether with this horrible condition than please have a look. And then maybe drop me – or some of the groups I will link to underneath -a line.
I present it unedited…
Here’s how I feel about the psoriasis shout out and how it’s effected me since.
I first heard about the shout out back in April through Helen the Flaky Fashionista and Tony [sic] Hadoke. They both had reached out to me some weeks before via twitter when I was at a very low point with my psoriasis. I had searched the hash tag #psoriasis and came across Helen first. We started to chat about various treatments etc, and then she introduced Toby to the conversation. At that point, knowing there were two separate people outside of my family who knew and also suffered from the disease was somewhat comforting. It truly gave me hope, and actually brightened my day. After a few conversations, they both mentioned about the ‘Shout Out’ campaign being run. I knew I had to be a part of it, even by just attending. I was also asked to take part in Helens fashion show and initially I agreed, but soon bottled it as I was scared of standing there and people staring. Looking back, I truly wished I did take part as I’ve since learnt to embrace my P and no be embarrassed any longer. I came to the event at Salford Royal, just as the flash dance started. I immediately felt myself welling up, I couldn’t believe that all these people were getting up and dancing for psoriasis – it was amazing. I went over to the van and spoke to some amazing people. I was slightly overwhelmed, and had a lump in my throat the majority of the afternoon. At this point my P wasn’t as bad as it had been on my arms so I was able to wear short sleeves, but my whole mental state was a mess. I felt low, ugly, angry and quite hateful. All of which slowly went as the afternoon went on. I was introduced to Helen and Toby, and I was slightly nervous. I was nervous because in the few weeks id had spoken to them on twitter, I’d become slightly in awe of their work for raising awareness and the like. I couldn’t get my head round how accepting they both were (to a point) of the P. We sat down and had a chat, and it was nice to just be truly honest about how you feel etc. We also made a few jokes about P and leaving skin around. Which, if you’ve ever suffered from P, you’ll know you need to maintain some level of humour to keep you sane.
Complimentary massages were on offer, Which I heard were fab. But one of the things I was keen to see was the mindfulness session and the talks about the future for P. I went into the mindfulness session with a very open mind – I know my limits and I know sitting there nice and quiet is beyond me. But I did it, and initially I thought this isn’t for me at all. But the weeks after I would say I utilised some parts every now and again. It was wonderful to hear the talks from everyone, it’s lovely that people actually look at P and think I’m going to do something about this. It’s not the most glamorous disease there is after all.
A real highlight of my day was meeting another sufferer called Russ. He’s amazing. He has both P and PSA, but he was still smiling. He read me his poem, I can’t explain how I felt but he hit the nail right on it’s head. Again, I turned into a girl and started crying. It was at that point I told myself to wind my neck in and just accept what is and move on. When I left, I called my mum right away who is also a P sufferer. And she was gutted she couldn’t get the time off work to come. She said that she could hear a change in my voice and said I sounded more brighter then I had in months.
Unfortunately, I’ve since had a flare up and was admitted to the ward. I was on there for two weeks, and it felt like therapy. The nurses ask you upon admittance what’s most important to you? I looked round and most people had put things like go home or get better. Mine was to wear shorts – I’m a girl, and I’ve pretty good legs apart from the scabs. I felt that the admission was the ending I needed to finally accept my P and embrace it as part of me. With the help of all the wonderful staff and patients I feel I’ve done just that. I’ve been out of hospital two weeks now, and the weather is scorching, perfect time to get my legs out in a pair of shorts. Yes I’m flake free for the first time in over 10 years, and it feels amazing.
I truly believe that the Helen, Toby and the shoutout were my turning point and is love to be able to help others out. So sign me up for next years shout out xxx
My thanks to Rebecca for letting me share her feedback.