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/ Continue reading 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 as high-risk, the UK government has asked me to ‘shield’ for … Continue 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: And the most important question: My infusion was called Rituximab (also known as Rituxan or MabThera), and it was to treat my ANCA associated Vasculitis. I … Continue 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 gain may just help somebody else. And so the idea of a book formed. Continue 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 entered the hospital to find out the results from my latest … Continue 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 symptoms of a disease or condition. Selfish? Probably. It is incredibly … Continue reading Stress: oh no, please don’t cause a flare!
Chronic Illness: Learning to Live behind my smile 