I became sick in January 2015, or potentially earlier if I look back over my health records from the years before that. I did not receive an official diagnosis until September 2018. That is almost four years later. This is by no means unusual – in fact, some would consider it a very quick diagnosis… More A diagnosis is an important part of dealing with disability
My fitness level, last time I got it checked, was that of an unfit 69-year-old. How do I know? When I was getting my ME diagnosis, I was hooked up to an exercise bike and a lot of different machines measuring different things. After analysing this data, it was compared to an ‘unfit average’ for… More Living with ME and POTS – my physical symptoms
A while back I texted my mum at 22:00 to see if she would be interested in writing a short something about having a child with a chronic illness. The next morning I woke up and mum had already sent me this article! I had to take some of the excessive praise out, but besides… More Dealing with chronic illness: a mum’s perspective
One of the biggest problems facing ME/CFS is the lack of research going into it. At the moment, there is no cure. And any possibility of a cure is far into the future. But it is still something that I want and dream about. However, in discussions about Disability Pride, it sometimes seems that, in… More Can I have Disability Pride yet still want a cure for my illness?
One of the first questions you get asked when you are getting to know new people is “so what do you do?” If you have a chronic illness and, like me, are unable to do very much, this becomes a very difficult question to answer. Our self-identity is very often made up of the things… More Chronic illness and the loss of identity
The Corona virus has been on the loose for seven months now and, in that time, has infected millions of people. Throughout the pandemic, certain key statistics have been reported, around the numbers of deaths and the numbers of recoveries. However, these statistics miss out a large group of people, who after months of having… More Post Corona illness and medical gaslighting
Since 1st June, a considerable number of countries in Europe have been loosening their regulations around the corona virus. Lock down is ending! I have heard friends planning holidays within Europe, and seen pictures on social media of people drinking wine on the terraces. But not for me. As I mentioned before, since the beginning of… More Corona lock down is ending, but not for me…
‘Chronic Fatigue Syndrome sufferers “can overcome symptoms of ME with positive thinking and exercise.”’ I’m sure we have all seen these headlines. A remarkable discovery: yuppie flu is exactly that; it’s not a real chronic illness – it’s just in people’s heads. Despite the fact that almost every case of CFS/ME (Chronic fatigue syndrome/myalgic encephalomyelitis)… More Off the PACE – scientific malpractice and chronic fatigue syndrome
In the last couple of days, in light of so much thought and discussion about illness, I have been reflecting on the period of time when I first became ill with chronic fatigue syndrome. And I can’t get rid of the lingering feeling that, in the next few years, as corona virus continues to spread… More I’m sick and at first I didn’t know