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

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 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

101 Ways to be Happy #2: thinking of spring

I had a notion that I was going to write a series of blog posts about 101 ways to stay happy in the face of whatever life throws at you, but after my first post on the subject (101 Ways to be Happy #1: five days on the Jurassic Coast), other stuff has got in… Continue reading 101 Ways to be Happy #2: thinking of spring

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

Four things I’ve learned about the welfare state

I try to be positive about my life, I try to tell myself I have worth despite my illness, but sometimes things come at me out of left field that make me question whether I should bother. Yesterday I read a story in the news about Michael Forsyth, who is being asked to repay all… Continue reading Four things I’ve learned about the welfare state