Psoriasis Update

I meant to post this about 5 weeks ago but I clearly didn’t. I don’t really have any kind of excuse why. Apart from I was probably napping and life got in the way I suppose.

I’ve been super poorly with 5 bouts of sinusitis in 5 weeks, which let me tell you is bloody miserable. I would be fine and dandy and then literally out of nowhere, I felt full of ‘cold’ symptoms, but without actually feeling like I had a cold. A few sporadic days off work. And then, as quickly as the symptoms came on, they’d disappear again. Only to return just a few days later. Repeat for 5 weeks in a row. One day life is going to give me a break.

I also went to Iceland for 4 days which was good because holidays are my favourite thing in the whole wide world. Saw some waterfalls. Saw some volcanoes. Suffered from sniffly sinusitis. Saw some more waterfalls. Also saw the Northern Lights though which was pretty super. Another thing to tick off my 30 things before 30 bucket list.

 

Although if anybody reading this has been to Iceland when in an arthritis flare can you please let me know your experiences because my impression of it from a disabled point of view, Reykjavik especially, was not positive and this was reinforced when I was speaking to a woman in a wheelchair who seemingly had had a terrible time of it. So I would be genuinely curious to know what others thought of it.

I also started running again and training for the dreaded marathon. 33 days to go FYI. Link to why I’m running is below:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=823987

Anyway, I digress.

I started writing this post when I was scrolling through instagram, and noticed quite a few of the accounts I follow had posted that a lot of photos tagged #getyourskinout had been removed due to them violating the community guidelines.

There is nothing about these photos that breaks the rules. They are often very personal photos, posted with immense courage by people who might otherwise be too embarrassed to share with the world just what their psoriasis looks like.

For the record, I have never once been embarrassed of my psoriasis. Sure, I hated it with a passion (mainly my scalp) but I never hid it away. I went on hot holidays and got my skin out in swimwear. Bare legs. Bare arms. I often wore sleeveless shirts to work without a care in the world. I was often praised for this, which whilst I appreciated (receiving compliments is second only to my love of holidays) I also felt baffled by because there should be nothing to compliment. It’s just arms.

So back on whatever day I first drafted this post, I decided to reshare a photo of my legs, covered in guttate (caused by sulfasalazine, but that’s a whole ‘nuther blog post), alongside a photo of my legs as they are now. My legs (and scalp, and arms, and tummy, and boobs and bum and face and well, ALL OF ME)  have been completely changed by cosentyx. No psoriasis. A wee bit of scarring but who cares. I certainly don’t.

I wish I had taken more photos of my psoriasis in the days and weeks after I started cosentyx, but it really did happen so rapidly it was too overwhelming. I think I have been completely clear for 5 months now. I still sometimes gaze down at my arms to check how bad they are only to be met by clear, soft, skin. I still occasionally scratch my scalp, expecting to feel something, almost wanting to feel, scratch and remove the plaques, and I’m still baffled that there is nothing there. Having my first haircut psoriasis free made me cry. That was how much of a big deal it was. I sat in the hairdressing chair and I was so overwhelmed by what was happening all there was to do was cry and hope that my muffled words of “just a trim please” was not swallowed up by tears. Thankfully I didn’t turn out bald so she must have got my drift.

Enough bumbling on from me. Spring has almost sprung. The days are getting brighter. I am looking forward to a great week ahead, finishing it off with a few days in Edinburgh where I am hopeful I will be able to do something that I love that I haven’t done in almost 2 years……dance.

To be continued.

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