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

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

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

The last wait

It's been a long time coming, nine months to be exact, but finally I am here in hospital ready to start Lemtrada tomorrow. It's not lost on me that I could have gestated a baby in the time I've waited for my lymphocytes to recover from the bashing that two and a half years of… Continue reading The last wait

The Riddle of the Sphinx

"What is that which has one voice and yet becomes four-footed and two-footed and three-footed?" This summer was challenging. In April I started relapsing, my fatigue becoming overwhelming and my walking getting markedly worse. I tried high-dose steroids to treat the relapse for the first time, but they didn't make any difference to my symptoms… Continue reading The Riddle of the Sphinx

The ongoing myth of MS: an open letter to Holby City

I don't watch all that much TV, and when I do┬ámy viewing tends to be a guilty pleasure. I don't have the stamina to stay up late to watch the latest cult series, or the organisational skills to commit myself to following whatever the current Netflix talking point is. In the evening, when I've managed… Continue reading The ongoing myth of MS: an open letter to Holby City