Today I’m looking at the resources that have really helped me not completely freak out and allowed me to get to grips with my situation.
It is devastating. Being told you have MS shakes your world; everything stops/contracts, fear roars to the front and we are moved, for a time, to feeling unreal, surreal in our own body and life. Then it gets very real and I for one, wanted to talk to other people with MS who were dealing with it and could tell me the down and dirty of life with it. I started a Meetup group in 2010 for people who wanted to talk to others with the condition, get information, feel ‘normal’ (because we are) and all without having to explain every little thing (it gets really tedious). I also needed to talk about work and staying financially independent. We are now 178 people from across the country (and some international) with 10-20 of us meeting once a month in Dublin city centre for a chat and a cuppa. For information and to join the Dublin MS Meetup Group click here or the image. I’ll respond asap.
Googling ‘MS’ can be a terrible idea, especially if you’re newly diagnosed. We look for the Penny dreadful-awfulness, the worst case scenario. However, nothing in the dreadful, harrowing stories you read is about you; it is the experience of whomever wrote it. Look out for the great sources of information such as:
The MS Trust is a UK based organisation that is focused on providing information people can trust because of their work and , supporting the MS specialists people need. It is one of the best places for really useful information,
Overcoming Multiple Sclerosis (the OMS Recovery Programme) is all about getting yourself to the best health – body, mind, spirit- possible.“It is based on the pillars of diet, exercise, stress management, sunlight, vitamin D and omega-3 supplementation, and, when needed, medication.”
Remember I spoke about meeting other people with MS? At Shift.ms people can meet and connect with other MSers, all over the world. This is a brilliant, engaging and powerful MS Community.
Build your strength by growing your knowledge and getting on with your life. Read books on MS, scientific papers, go to lectures on neurology/the brain/the mind, read about love and practice a life of happiness, write poetry and research the psychology of chronic illness, talk to other people with MS and when ready, delve into the horror of what life with MS can mean for some people. Always come back to yourself. You are unique, you have a life to get on with and all of these resources will help you make the most of it no matter what the diagnosis. I am not about being naïve. I am all about being informed and prepared no matter who you are, the life you live or type of MS you are living with (Relapsing-Remitting, Primary Progressive, Secondary Progressive or Progressive-Relapsing).
What do you think? What has worked for you? Comment below or get in touch on Twitter @emmadragon. Peace.
© Emma Rogan 2016