Category Archives: Uncategorized

I recently wrote a blog for the UK based Genetic Alliance about my feelings on coming out of ‘Shielding’ and how I feel I can return to life after the COVID 19 initial pandamic response. Please have a read at the link below. https://covid-19.geneticalliance.org.uk/news/coming-out-of-shielding/

I have thought long and hard about how to approach this blog; it is such a hard situation to write about. Half of me wants to make it light and supportive, but half of me is terrified that I am sitting here waiting for death to arrive at my door. I’m immune-suppressed and classed asContinue reading “COVID-19: Vulnerability and the Serenity Prayer”

Please note this is my personal experience of Rituximab, your treatment may vary, you should discuss your individual plan with your doctor. I am not providing any personal advice. So you need to have a biological infusion? My first thoughts were: What the hell is that? How long will it take? Will it hurt? AndContinue reading “Rituximab infusion, things I wish I had known”

Today I launch my first book, I’m nervous, excited and also terrified. The book started as my own therapy of how to deal with everything that was changing in my life, and then I started to write down things I had learnt along the journey. And then I thought that the insights we had gainContinue reading “New book published: Chronic Illness: learning to live behind my smile”

One hospital visit for a routine appointment and I leave the building six and a half hours later, I like to think it is some great marketing pitch to sell the food in the hospital and boost funds, but I don’t think they are sophisticated enough to plan that far in advance. I only enteredContinue reading “Six and a half hours I will never get back!”

This week, we had a sad loss in the family, and it has been very emotional. However, for me there is an extra dimension to the news, how can I manage the stress levels and ensure I do not cause a flare in my disease? A flare is simply a sudden worsening of the symptomsContinue reading “Stress: oh no, please don’t cause a flare!”