In April 1985, Beverley was getting ready to fly to Brazil to speak at a WHO International Conference. Unfortunately she responded badly to her yellow fever vaccinations. Despite feeling dreadful, she felt she couldn’t let the organisers down and went on her trip. Not long after she returned she was hit by the flu, which turned into a never-ending exhaustion. She was diagnosed with, what was then called the Yuppie Flu, now known as ME/ CFS. It took her eight years to fully recover, but since hasn’t had a single relapse. Whether or not my brain is back to normal, she says, is an entirely different question 😉
What is your advice to people who are just diagnosed?
Listen to your body. Don’t push through and give it time! But know that it is possible to recover.
Who is/ are your biggest supporter(s) and what did they do?
I was very fortunate that my GP was sympathetic as we struggled to find out what was the matter with me. At that time, in the 1980-ies, ME/ CFS was called the Yuppie flu, suggesting that those who had it were just slacking. At one point, having read numerous negative, dismissive, articles, I asked my GP why she believed that I was actually ill. She said that as she had rarely seen me in her surgery and, and as I had been a fit and healthy woman, she knew that there was something seriously wrong.
By the time I became ill I was a single parent of two boys aged 9 and 13. The boys were getting themselves, and me, breakfast and taking themselves off to school, the eldest on a bicycle, the youngest with the help and support of my neighbour. I recall lying on the settee giving the boys a step-by-step guide to cooking a roast chicken for Sunday lunch. To my shame, my youngest remembers my comment on their wonderful achievement as, “Oh, you have put the stuffing in the wrong end!”.
Later, when I was a bit better, I was asked if I could come to a meeting. I was not sure I could do that, but they begged me, “please come, we need you here, and don’t worry about running out of energy, we’ll arrange something for you.” So I went, and when the meeting broke for lunch, one of the staff came over and said, “we are going to have our lunch and you are going in here”. I was led into another room in which a bed (and my lunch) had been arranged. “You can have a sleep and when you feel recovered come in and re-join the meeting”.
What were the key elements for your improvements/ recovery?
A GP who believed I had a serious illness and the realisation that I had to slow down, not push myself and celebrate the small improvements.
What good thing has your illness and journey brought you that you would not have had otherwise?
What is your go-to comfort food?
Can you share a quote, cartoon or inspirational message that cheers you up?
Gloria Gaynor singing I will survive and watching Mama Mia.
If you have to come up with a metaphor for CFS what would it be?
I found that if I pushed myself, not only would I feel exhausted, but the worst symptom was the feeling someone had attached a series of strings tied to my internal organs and suddenly tugged them. The only way I could stop the pain was to lie flat on my back.
Please share a picture of you in your happy place