Back in the pre-“YouTube” eighties, I learned how to change a plug. It’s about the only thing I remember from being a Girl Guide - well that and how blue my knees turned the day we marched in the perishing conditions of the Saint Patrick’s Day Parade!. Since then, any electrical device that goes on the blink in my house gets its fuse checked and its wires inspected… quick sticks!!! After that, I put down the Phillips screwdriver and call in the experts. It is empowering for me to know that I can manage the simple stuff by myself. Of course, I would never attempt a solo run on a big electrical job. I do think however that it’s important for me to understand in advance what I am getting done and why.
I try to take the same approach when managing my MS. Since being diagnosed in 2010, I have picked up a few “tricks of the trade” on my journey. I can read the warning signs and so be better prepared when a relapse is imminent. I can take steps to minimise the impact on me and my family. I now know that a 30 minute nap helps to “reboot me” when I feel that fatigue has rendered me unproductive and foggy. I figured some of these things out by myself but the majority have come from observing how other MSers manage their symptoms in order to get the best out of life with a chronic illness.
I still need help when it comes to medication. When I read about all the therapies currently available to me, I get overwhelmed and confused. New studies excite and baffle me in equal measure! Finding the right medication has a huge effect on my quality of life and I need guidance to break medical jargon down into plain, meaningful English. I need to know what I can do to help my own condition and much like the big electrical jobs, I need to understand what I am getting done to my body and why.
The EUPATI Toolbox on Medicines Research and Development is a 'go-to' resource for patients who want to understand how new medicines are researched and developed, as well as how they can get involved in this process. Launched on 27 January 2016, the EUPATI Toolbox has articles, factsheets, slides, videos and infographics on over 50 topics related to medicines research and development and patient involvement. It can be used for self-learning and personal study, but it can also be used for training and it has been released under a creative commons license in the hope that patients will share this information with others, and adapt it to suit the education needs of their communities.
I am excited about the EUPATI Toolbox as it is providing me with some of the missing pieces I need to be better informed about my own health. From now on, when I come across a medical term I don’t understand, I will be taking a look a www.eupati.eu to fill myself in on what it means. I urge you to check it out and see what you think. Baden Powell had it right when he said that it pays to “Be Prepared".
Watch NOW!
Add new comment