The administrative burden of chronic illness

When you're diagnosed with a chronic illness, i.e. an illness that you're going to have for the rest of your life, there is an initial period of shock and disruption. This might last for weeks or months, but eventually you find that life settles down and you adjust to the reality of living with your… Continue reading The administrative burden of chronic illness

The listeria diet

In my time waiting for Lemtrada (alemtuzumab) treatment, I've been part of a very useful Facebook group with members who have had, or are having, or are thinking about having Lemtrada. It's a great place to get support and advice about a drug which has many possible side-effects and treatment regimens that differ wildly from… Continue reading The listeria diet

Checking in: three months after Lemtrada

The peonies in my garden are flowering for the first time since I planted them three years ago, so there's no doubt summer is almost here. The last three months since Lemtrada have passed in a blur, and I can't quite believe we're more than halfway through May. It feels like a good time to… Continue reading Checking in: three months after Lemtrada

101 Ways to be Happy #3: a day on the South Bank

Today is the three month anniversary of my discharge from hospital following my Lemtrada treatment. Since it was decided that I would have Lemtrada, a year and a few years ago, I've been on a special anti-listeria diet. It's been a challenge - no chilled ready-to-eat food, no unwashed salad or fruit, no cured meat… Continue reading 101 Ways to be Happy #3: a day on the South Bank

Labels

The seventies, when I was born, is an almost unrecognisable place. Back then, even into the eighties, attitudes in Britain towards people of non-white ethnicity, non-British origins, non-heterosexual orientation, or disabled people were largely acceptably offensive by today's standards. Terms that are now understood to be deeply insulting were an unremarkable part of the everyday… Continue reading Labels

Lemtrada: day four

It's day four of Lemtrada, I have one more night in hospital and one more night of treatment, and the rash is here! I currently look like I have the neck of a 16-year old boy after his first experiment with his dad's razor. It started with itchy arms when I woke up this morning,… Continue reading Lemtrada: day four

Lemtrada: day three

It's getting a bit like Groundhog Day in here. I woke up at 4.30 this morning and just couldn't get back to sleep, I think thanks to the steroids rather than any disturbance on the ward. I put my Calm app on my phone and listened to a story about the Nordland Express in Norway,… Continue reading Lemtrada: day three

Lemtrada: day two

My last two entries were quite short and I didn't go into much detail because I was tired and a bit too spaced-out to get my thoughts in order. So I'm writing this a bit earlier in the day, and hopefully I will remember all the things I meant to say! I'm now hooked up… Continue reading Lemtrada: day two