Smiling through life with MS
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
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
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
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
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
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
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
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
"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
When I was a child, Christmas was my favourite, favourite time of the year. In fact, the whole slow sweep from October into the 25th of December was joyful to me, gradually gathering momentum until The Big Day. I loved the presents, of course, but more than that there was something ineffable about the nights… Continue reading Coming back to Christmas
