Today my pain had not passed like I predicted it would last night. My legs hurt. My arms hurt. My body hurt. And my face hurt but only a little bit. This was all due to getting cold at the gym. As I said, the pilates movements didn’t make me sore. I have no muscular soreness or tiredness. Everything that is sore is my skin. It’s burning, agitated, inflamed, panicked, cold, hot, tight. It makes it so difficult to explain to people sometimes.

This morning I had my regular check up with the dermatology team at the Royal Melbourne Hospital. A big shout out to them – they are fantastic! There I have a team of about five regular dermatologists who are there year in, year out, and then registrars that rotate each year. I also have a dermatology geneticist who has provided me with a great insight into my condition. Fortunately for me, the head of the dermatology team is the best in Australia, and I get pretty good attention from him and the rest of the team.

When I have a check up, they rarely ‘treat’ me unless I am sick and need to be admitted to hospital. Generally they just prescribe me authorities for the creams and tablets I need, ask me how I am coping with life, and get numerous other dermatology student doctors, visiting doctors and specialists from other departments to come to look at me. Sometimes it feels like I am a zoo exhibit with so many onlookers, but these days I am asked whether I want onlookers before I get them. I have said no on occasions when I’ve not felt well enough to discuss my WHOLE MEDICAL HISTORY (how is telling them about the day I was born going to benefit the present day’s appointment? I have asked them!).

Today it was good to go to the hospital feeling sore and sad (because of the soreness) so I could talk it through with the team. It’s always good to have some reassurance from someone that they’re there if I get too unwell, and of course someone who understands the pain.

Quite often if I see a new GP or registrar in the emergency ward, my skin condition is more of a novelty interest for them, and they focus on that rather the skin issue rather than my sore throat, or in the case of the emergency ward, they may not understand the severity of it, or be shocked by the severity of it! I guess it’s so rare that the doctors less experienced in dermatology want to learn as much as they can from me, or put me in the too hard basket.

The dermatology team also focus on the whole of my medical care, and refer me to other specialist departments at the Royal Melbourne such as the eye specialist, ear nose and throat, surgeon and genetic counselors. If I need urgent medical attention they are there for me when I call the hospital. All this care for a public patient is wonderful. I never begrudge paying my Medicare levy or Medicare levy surcharge!

Even though I was really sore today, I left the hospital with a (small) chocolate pastry (the Royal Melbourne Hospital cafeteria ROCKS!) feeling really good about myself. It was really good to have a sounding board. And one of the doctors reiterated how ‘amazing’ I am to cope with this condition and lead such a full life.

Work was pretty fun too, which meant my soreness didn’t worsen. I work with a great group of people and my work is very rewarding and friendly which I love. (I have also found it hard to switch back to the PC keyboard at work since buying my MacBook Pro!)

After work I wanted to rest up and elevate my legs, so didn’t feel like cooking. I bought dinner, which is rare for me to get takeaway on a weeknight.

I bought sashimi (I adore raw salmon, not so much cooked salmon) and rare beef from Sushi Sushi, and prepared a very quick salad of blanched cauliflower, asparagus and broccolini, grapes, salad greens, the carrot from the sashimi and cherry tomatoes, with a dressing of lime juice, chili, sesame and sugar (inspired by Faux Fuschia). It was delicious, and very healthy. I loved the tang of the dressing on the salad paired with the sashimi. I didn’t rate the rare beef though, and wouldn’t recommend it – too bland, even with soy sauce on it.

Here is a photo of my dinner. It may be a bit bright and plastic looking because of the flash?

It was very yummy!