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A Day in the Life - Andy's Day

Woke up at 7.00, early for me, with alarming news coming from the radio.

Ever since my big flare of Pemphigus Vulgaris it takes a while to get going in the morning.

First Betamethasone mouthwash of the day. There’s PEM in my mouth.

It’s sleeting.

Usual breakfast of porridge followed by zinc, iron, and vitamin D supplements.

Put some Dermovate ointment on a few bits of scalp PEM and later added some Etrivex (clobetasol) shampoo… left it for a while before rinsing it all off.

Spent the rest of the morning adding the final touches to a spreadsheet I’m making for PEM Friends.

Today is Thursday so it was the weekly PEM Friends Zoom gathering at 12.30, always good to see everyone and have a chat.

More Betamethasone mouthwash.

Tried to call the GP to get the results of a recent blood test. The test might indicate if the effects of the Rituximab I had for PV have faded. Their phone is out of order so walked to the surgery. The test results are difficult to interpret but it looks like my B cells are finally bouncing back so make an appointment to get fourth COVID jab tomorrow at the local vaccination centre.

Take the vacuum cleaner apart and rinse all the bits. It really needed it… I don’t know why, it doesn’t get used much!

The weather has improved, very windy and cold but the sun is making an effort. Go out for daily walk. I try and do at least 2 miles on most days but sometimes the PV fatigue gets the better of me. Do the inland route today as the beach will be freezing.

Partner gets back from work at 19.15. This week he has had to physically go into the college where he teaches because of staffing issues. I’m still vulnerable to COVID and neither of us is happy about him having to be there, especially now the restrictions have been lifted. He’s wearing a mask in the house. And testing all the time, of course.

Had another go with the Betamethasone mouthwash.

The vacuum has dried out so took it for a test drive. Much better. Small wins are important.

Watched the news. Very disturbing. Mouth hurt while I ate dinner.

Read more of “An Elegant Defense”, a book about the immune system.

Final Betamethasone swish of the day.

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