My Psoriasis Journey

Here we go, I wasn't sure I was going to write this blog post as I find myself feeling sort of embarrassed by my condition, but then I thought why shouldn't I talk about it because I am not the only sufferer. By talking about it I might inspire others to talk about their suffering which can only be a good thing, Right?

So for many years I have suffered with a dermatological condition known as psoriasis, I have often suffered small break outs on my face, hands and wrists which have always been controllable. I have been using a dermal cream soap and using a moisturizer for years now, and when I have suffered a bad flare up I have been to docs for a steroid cream and used vasaline which has regained control and eventually the psoriasis has disappeared. I have not actually managed to find the cause of my psoriasis to date, but in the last 18 months or so I have found it spread to my scalp but has been controllable, I switched out my normal shampoo and conditioner, and replaced with a vegan shampoo and conditioner with know nasties in it, to a degree it was helping. Until it wasn’t!

In the last 9-12months it has become gradually worse, to a point I was really struggling, I went for a shorter haircut to try and help things! But eventually it got to a point where shampoo and conditioner just weren’t cutting it anymore and I have been in agony with it all. I had to head back to the doctors and was given a medicated shampoo and some steroid cream to put on my scalp in an attempt to regain some control. Sadly I was struggling to get the cream on my scalp and it was making my hair greasy which wasn’t making me feel great, plus I was still really struggling with a sore and itchy scalp which made me feel embarrassed. I was becoming stressed out and anxious about it all, but that probably hasn’t helped as stress can make it worse. I have even tried changing my diet by eating less meat, bread and trying to be healthier but I am yet to find the cause.

 

So I bit the bullet and headed back to the docs, as sadly by this time my psoriasis flare had spread to my ears, arms, some spots on my legs and chest which really hasn’t been helping my mental health in any way at all, feel so self conscious of my body at the moment, my arms look awful and get so itchy and sore. I revisited the doctors and they have put a referral in to a dermatologist but I have to await an appointment, I am alternating my steroid creams on my scalp, and I have to spread it on my arms and legs too, I moisturise daily because if I don’t I am itchy constantly. After the most recent docs visit I made the decision to cut my hair off after docs said I needed to make sure I was fully rubbing steroid cream into my scalp for it to help. Since then I have lost most of what was left other than tufts here and there!

Not feeling good about myself at all, looking like I am a cross between psoriasis sufferer and god knows what, my head and body look awful, found myself covering up with hats, bandana headbands and long sleeves. Megan even asked me if I was getting poorly with cancer which broke my heart, I had to explain that mummy had a sore head and body because of a nasty psoriasis flare up. Then over the February half term my lovely friend turned up on my door step with the most amazing present, a gorgeous long curly wig to help me feel comfortable and more myself again. Her words ‘I wanted to see you smiling again’ because even though I’ve had my hair short, long, short again and a variety of colours its all been because my hair made me feel good, my crowning glory so to speak. If I was having a good hair day it always helped if I wasn’t exactly feeling at my best. So having to remove my hair was the most scary, heart breaking thing to me and I know many people go through this everyday for a variety of different reasons, and I am not looking for sympathy in anyway at all, I just want to get my story out there.

Recently I kind of bared all on my Instagram after receiving the wig, with recent events in the media and the whole BE KIND campaign I decided to post a with and without the wig picture for awareness more than anything to show no matter what someone looks like you never really know what might be going on behind the scenes in their life. I have since got another wig again not real hair and its a short one that needs a little tweaking before I can happily wear with pride, but I will wear it and I will feel good in it. I do not wear a wig at home I tend to wear my bandana, I did gain control on my scalp and has some lovely regrowth, but this has been short lived as I have flared again. Which in turn has meant I have had to remove the regrowth and go back to stronger steroid cream so my hair is tufty again, this is not making me feel great but with everything going on with the corona virus outbreak I could be waiting a while for dermatological appointment for my photo therapy and what ever else they decide to do. In the mean time I guess I will flit between flares and controllable on my scalp and I hope to gain control of the flare ups on my arms, legs and chest because right now I am dreading spring and summer coming because I don’t feel like I can wear skirts or dresses with no tights and I don’t want to wear short sleeves very often either. To be brutally honest it has really messed with my anxiety and mental health, I worry what people might say about the fact I have no hair so don’t like leaving the house without a wig, and then I find myself worrying what people will say if they realise I am wearing a wig.

My intention with this blog and some future ones is to keep you update with my psoriasis journey and what happens with dermatologist appointment when that comes through, plus I fully intend to book myself back into the doctors and ask for tests to be done to try and get to the root cause of my severe flare ups as I just can’t go on like this anymore. I want my own hair back and to be able to wear the clothes I want to wear without feeling self conscious about how I look.

Do you suffer psoriasis or something similar? What do you use to control it? I will try anything to find something that works.

Thank you for reading and supporting me. Follow me on all my social media links found on my contact us page.

 

Kayleigh x