Maybe it’s because I’m Icelandic and from a seafaring nation but the sense of life as a journey and that my experience is my ship and I am its captain has been integral to my life for a long time now. As a captain I am acutely aware that any successful journey, any successful exploration requires a strong and committed crew, with skilled experts in each role.
Easing difficult symptoms towards a stronger health or even full recovery, in my mind, can be a challenging journey where we often don’t even know if we’ll ever reach our desired destination.
One of the unexpected challenges of my journey to recovery, and what I see with the patients I work so much of the time, is the lack of understanding and prejudice associated with these types of symptoms. Some medics and practitioners would tell me that my condition was so severe that I would never recover. Some would say that it was all in my mind. Some would promise a miraculous recovery. Some would blame me for not trying hard enough when something didn’t work. Challenging those practices, educating medics, practitioners, colleagues and loved ones alike is an important and demanding mission that we embrace.
I was ill with M.E. and Fibromyalgia for six years. For the first year I was pretty much housebound, needing extensive care and support. For most of the six years of being ill I had to make use of scooters, wheelchairs, walking sticks and all sorts of aids to help me function and improve.
I have now been well for a good few years and over the last five years have dedicated my resources and focus on working with people who are experiencing CFS/ME and related symptoms in collaboration with the Optimum Health Clinic in London. With over 3000 clinical hours under my belt and having supported hundreds of patients, I’m acutely aware of the need for this type of support and how important it is that it is easily accessible and available.
You are the Captain of your Ship. Choose your crew well, they will help you reach your destination.
A few years ago I attended a conference; Monica Greco was one of the speakers presenting a paper1 on not just CFS/ME but on a whole array of symptoms for which currently there isn’t a clear test or a marker and therefore there are limited options of treatment or support available. She told us that it is estimated that 50% of all visits to GPs are in this category of symptoms. I found this statistic truly shocking. Since then I have expanded on my learning and practice to include the whole of this category.
As I learnt about my conditions and symptoms, the people in my crew were integral to the success of my journey and ultimately full recovery. I benefitted from expert advice, knowledge and understanding, from across different areas of expertise. They were the people who knew this terrain and had travelled it extensively before me. Their advice, knowledge and understanding helped me orientate myself and navigate my way.
Thora Rain, MA Hons