Jess' Hospital Diary

Day 1

It’s day one in Ward 4 and already I have a pit in my stomach.

Like many people, I hate hospitals. In my head they’re for the sick and elderly, not people like me, young, active and healthy. As the nurses help me with my gown and my first round of lotion, a thick paraffin based concoction, the guilt sets in. A voice in my head says ‘This is your fault, you let your skin get out of control’.

I think it’s easy with a condition like psoriasis to feel guilty when you have a flare up or bad patch (ha, get it bad patch), because we feel so responsible for our condition - whether or not it’s actually in our control.

By noon, a nurse is applying my first layer of dithranol, a white paste that’s spread over my whole body which according to one nurse ‘will burn the scales off’. Having a medical professional apply paste to your entire body (and I mean entire body) is a humbling experience. There’s no judgement or space for awkwardness, because you just have to let them do their job and help you, because the reality is, if you’re in hospital with psoriasis you need the help, and that’s okay.

It’s 4pm and the boredom has really set in and made me reflect on my condition. I think about how it’s shaped my life so far and my relationship with my body. It’s never been a neutral relationship, it’s always been intense hatred for how it looked, how it felt and made me feel, or intense delight over a recent treatment success that’s given me a bit of respite.

By 8pm, I’ve had the dithranol softened with more paraffin, followed by showering with an emollient and the ever familiar Capasal Therapeutic Shampoo (if you know, you know). And finally, I’ve been smeared with a layer of coal tar which gets into every nook and cranny as well as staining my bed sheets (which I’m really trying not to focus on).

So that was my first day in hospital, and I’ll be following my journey as I stay and get treatment. What I hope this series might do, is help people with psoriasis know they’re not alone in their feelings and to know what it's like getting psoriasis treatment as an in-patient, so that they feel more prepared for what can seem like a massive experience.

Day 2

It’s 6:30 am, and I wake up feeling greasy, a nurse is at my bedside asking for my arm to take my blood pressure and my bed feels coated in black coal tar. On a side note, did you know that literally comes from coal?! I didn’t.

The day properly starts at 8:30 am with breakfast and changing the sheets, giving me a fresh set to swiftly ruin with my pastes and potions. The morning passes quickly, a blur of attempting to shower off last night’s ointment - do all psoriasis creams make you feel waterproof? Before reapplying a new layer of dithranol and talcum powder until I resemble a rather lopsided snowman.

The only difference to my treatment today is that the nurse spends an extra half an hour applying coal tar to soften the scales on my scalp, which I sit with the entire day. If there was a smell from my childhood that might be it, coal tar, the thick heady smell of that orange slime, which rather disgustingly has always reminded me of melted earwax. It’s the sort of ointment that coats everything.

I think it must win the dermatology popularity contest every year because I swear this ointment is prescribed for everything, by everyone who deals with psoriasis. And from there, time decides to slow down to a snail’s pace.

But then halfway through the long afternoon, something rather surprisingly yet also completely expected happened. All of us in Ward 4 began to talk to each other. In an age where we expect everyone to be on their phones or in their own bubble, human connection still wins out and we seek out the thread of commonality within us - psoriasis.

And so that’s what we did, we talked about our own psoriasis stories, the years of treatment and plethora of creams and concoctions we’ve received. The pure joy I felt talking to other people about psoriasis, who didn’t just listen but understood in a deeper, more meaningful way.

And that’s how the rest of the day went, getting checked by the nurses, reapplication of moisturisers and little pockets of chatter and comradery over our shared experience.

No matter how my treatment goes or what my skin looks like at the end of this, I’ll remember this sense of togetherness and appreciate it.

Three days, that’s how long it takes for the hospital routine to get old, for me to start to feel the hours trickling by and feel exhausted by the constant company and overstimulation of the hospital.

The morning goes by with the same routine I’ve completed for the last few days; blood pressure and temperature, breakfast, sheets changed, shower, paraffin base and dithranol applied and left to marinade on my skin.

However, today is the day I see my consultant and we discuss my treatment going forward. This is the day I’ve been waiting for, because it’s when I get to discuss their next treatment plan for me… Immunosuppressants.

But let me back up first.

Over the last 14 years of having psoriasis I’ve learned three things; 1. Your skin impacts your life far more than you realise, 2. Everyone’s got an opinion for what the cure is, and 3. You’re often never fully taken seriously because ‘it’s just skin’. That’s probably why it’s taken me 14 years for immunosuppressants to be offered because the reality is I’ve never actually taken my own condition seriously enough. The immunosuppressant they want to offer me is called Adalimumab (try saying that three times fast). This injection is taken every two weeks and does exactly what it says on the tin, suppresses my immune system, therefore suppressing my skin cells from growing wildly out of control.

And this feels like a huge decision for me because it has the potential to hugely impact my health and also because my fiancé and I had originally planned to go abroad this September.

We had a full plan in place, were well underway with our TEFL qualifications and had been looking to get visas and plans finalised. Now, obviously it’s my choice to take the Adalimumab, but when you’ve had a condition for 14 years and someone offers you what feels like a silver bullet, it deserves some consideration. And that means making difficult decisions to put your health first and focus on trying to get better.

My point is, chronic conditions take up so much room in the brains of those who have them. The symptoms, the treatments, it all takes us space which we’d be rather using for something else - even if some might say it’s ‘just skin’. And that’s what people don’t realise. It may just be skin on the outside, but it’s not skin deep.

The saying goes, variety is the spice of life, and this couldn’t be more true as an inpatient for dermatological treatments. Which is why I’m here to give you Jess’ Top Tips on Keeping Yourself Entertained!

First up; hobbies. If you’ve not got any hobbies it’s time to find one and quickly or if you’ve got a hobby (or hobbies) it’s time to stockpile on activities related to that like the scaly little psoriasis dragon that you feel like.

For this visit, I’ve brought ten downloaded seasons, eight downloaded movies, six new books, five balls of yarn, four crochet hooks, three packs of card making materials, one Mario switch game and a partridge and a pear tree.

So, if you’re going into hospital for an extended stay, try to explore something you’ve had your eye on; scrapbooking, crocheting*, drawing, the world is full of great ideas to fill up your time. You can see below the crochet lemon hat I made!

Second top tip, walking (if you’re able)! I’m in the privileged position where I don’t have psoriatic arthritis, and so mobility isn’t an issue for me, so approximately 4 - 5 times a day I go for a short 20 -25 min walk through the hospital.

Thirdly, use this time to watch those new shows and movies you haven’t had the time for! Before I came into the hospital, I made a little list of things I wanted to watch and have kept to the list. The other I’d recommend is not watching tv or movies all day, because in an empty hospital day, 14+ hours of screen time will leave you feeling sluggish as hell.

And finally, and most importantly, make time for friends and family! I’m in the position where I’m in the hospital isn’t close to my friends and family, so I’ve been making time for them digitally. For example; I’ll have a digital lunch call with a friend or have a cosy gaming and video call session in the evening with another friend or go for a walk and rant call if I’m feeling a bit down that day.

My focus has been on making myself as comfortable as possible while I’m in hospital, because the more comfortable I am, the more relaxed I’ll feel meaning I’ll get better quicker. Hope you enjoyed this list to keep you entertained and that you got some inspiration if you’re going into hospital as well!

Day 5

And with the weekend over, I return to Ward 4 for my next week of treatment. Over the weekend my psoriasis continued to amaze me by clearing up more than I’d seen in the last two years.

Compared to last week, I feel much calmer as I settle into my bed and space for the next week. The unknown makes up the majority of our fear when it comes to hospitals, but now that I know my daily routine I feel in control. The nurses are familiar to me now, the timings around treatments and the general feeling of being in hospital feels less alien and unfamiliar. And I’ve got the company of some of the same patients who joined me in the ward last week.

And so the day goes as expected, I arrive at the ward, I settle in and apply my paraffin base before the doctor arrives to assess my skin.

Fortunately for me, my psoriasis has responded well to this daily topical regime they’ve given me. The only problem is… the itching. Potentially one of the worst psoriasis symptoms (at least for me) this itching has been with me for over a decade. If left to my own devices I could spend hours itching, going from limb to limb trying to get some relief… relief that never comes.

Let’s stop talking about itching now because I’m thinking about it too much!

The other big change today is that I’m moving up in strength with my Dithranol from 0.1% to 0.25% strength, meaning I’ll be hyper vigilant with how my skin’s feeling. Any burning sensation and the paste needs to come off.

Other than that it’s been a quiet day. The treatments keep working and I try to remember that I’ll have to try and keep up a better moisturising routine at home.