For the last … I don’t know how many weeks, to be honest, I have had insomnia. This is unusual for me – I’m a good sleeper, I have good sleep hygiene…Fibromyalgia and Insomnia
Only a day after writing the blog post – “Twenty Ways To Enjoy Cooking Without Pain “ a blogging friend sent me a link to the BBC on an article entitled “Fibromyalgia and pain: How cooking gave me my life back”
In the article Bryony Hopkins BBC Ouch, wrote that Fibromyalgia sufferer Ian Taverner said “When he turned to his cookbooks while managing fibromyalgia, he found the timings unachievable and the expectation of the photos overwhelming.”
“The pain was so bad I couldn’t hold a knife, I couldn’t stand up to cook, I couldn’t carry anything,” he says. “I almost gave up before I started.” “Ian spent years “existing” until the NHS referred him to the pain management programme at the Bath Centre for Pain Services – the last form of treatment available to him.”
Initially, he took to the kitchen alone, but found he needed the support of his wife and girls to make it happen.
“To start with, I thought, ‘I’m not really cooking, because they’re doing it’, but actually the point was we were doing something together.
“We tried some really simple things like boiling an egg and I needed help with the hot water pan because I would drop it. I learnt it was okay to make a mess – the key point was not to give up.”
Slowly, Ian developed methods to cook and realised others could benefit from what he had learned and came up with the idea for a cook book he called Cookfulness.
The recipe book focuses on cooking with a disability or chronic condition. It doesn’t contain any photos of the finished dishes and the timings are adapted to allow a realistic cooking pace.
“I don’t want people to feel there is a ‘success’ criteria,” he says. “Whatever you come up with – it’s right.” Ian now cooks every day.”
“Ian’s top tips are to keep pre-chopped vegetables in the freezer, batch cook, prepare your utensils in advance, use all your space in your kitchen and dob’t be afraid to ask for help. “
To help research and to understand more about Fibromyalgia the National Fibromyalgia Association (Official Research of the NFA) have a very important survey that sufferers of Fibromyalgia could take part in.
The survey is on patient reported symptoms. The NFA are excited to be partnering with the Department of Neurology at the University of Rochester Medical Centre to implement this study to better understand which symptoms are of the most concern to people diagnosed with Fibromyalgia.
The goal is to advance their understanding of the experience of living with Fibromyalgia, to enable them to help guide and encourage the development of improved therapeutic treatments.
To take part in the survey head to the National Fibromyalgia Association website or click here. If you prefer more information about the survey before you take part then you can find more information about it here. You can also become a member of the National Fibromyalgia Association here.
Without these sort of surveys it is hard for medical professions to get a true light on the pain with Fibromyalgia so it is important that we all take part in it.