Originally posted on Living in a glasshouse:
It’s hard to know what to do in a pandemic. There are so many things we can’t do the way we’d like to do them. There are other things we know we could do, but it’s hard to get started. Occupational alienation is a concept that can help…
Category Archives: Uncategorized
Some days are flat
Some days I feel very flat, not flat-chested, flatlined or flat earthed, just plain flat; the feeling where you really don’t care what happens, what you eat or wear. I’m not sure if you class it as fatigue, depression or some other title that may fit the mood. I don’t like to admit that anyContinue reading “Some days are flat”
Hey Politicians, remember there are more than two sides to a story
I am so tired of governments assuming that we are on one side or the other of an argument! We are all either Brexiter or Remainer, believe COVID is real, or we don’t, and we are racist or not. There is an assumption that we pick a political party and cannot ever agree with theContinue reading “Hey Politicians, remember there are more than two sides to a story”
Coming out of shielding
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/
COVID-19: Vulnerability and the Serenity Prayer
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”
Rituximab infusion, things I wish I had known
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”
New book published: Chronic Illness: learning to live behind my smile
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”
Six and a half hours I will never get back!
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!”
Stress: oh no, please don’t cause a flare!
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!”
