Change is inherent to all forms of life, especially true for us as human beings. As things in today’s society evolve so rapidly, we need to constantly adapt and find our way through it all. Things are often complicated and exciting at the same time, and for some of us they are enough as they are. But sometimes faith decides to add some spice to it all. Enter multiple sclerosis, our common friend.
Last week in Oslo, during the main EMSP 2016 Annual Spring Conference (I talked about it HERE), there was also the meeting of the Young People with MS’s Network. This was the 6th year since the group first started, aimed at raising the voice for all young people living with multiple sclerosis throughout Europe. For two days (18-19 May) we brainstormed and came up with ideas and plans to get the YPN moving forward.
The EMSP was kind enough to offer bursaries to a limited number of young people who wished to participate. There were also “veteran” members who only added more insight and experience to the ones who were just starting their journey. We were divided into four groups that each brainstormed new and useful ideas.
This year the aim was to discuss about readjustment in all areas of our lives while living with multiple sclerosis.
Usually, by “adjustment” we understand a change made in order to fit, correspond or conform to a certain state of things. It means to adapt or to accommodate something or someone to a new situation or context. It is self-explanatory that to “readjust” means to adjust again, to rearrange the pieces so that they once more fit the puzzle. The puzzle of life with MS in this case.
Change is inevitable. I’ve written about it HERE, HERE, HERE and HERE. As we grow old, we change. We even change as quick as from minute to minute in some cases. And that is especially true when one minute we’re our old selves and the other we find out that we have an incurable disease named multiple sclerosis. How do we go on?
We all react in different ways to shock. Some get afraid, some become angry, it depends. We all are different. But we all readjust as time goes by. Each in our different times, with our different struggles. Some people refuse change altogether. They deny anything happening to them and try to go on living as they did up until then. But sooner or later, reality comes knocking, waking them up.
Readjustment needs to be done early. We need to be prepared. (Tweet this)
This was the context in which our discussions began. We exchanged opinions on how the situation is in each of our countries and more importantly, what have we done on a personal level, to adapt to what I may call “our new normals”, how did we readjust to life with multiple sclerosis?
Little to no surprise, the common denominator was the fact that multiple sclerosis is something you can live with if you have the right tools to transform our lives for the better and be prepared to what’s to come.
Life is unpredictable by itself, MS adds to the equation, but it’s vital that we get to know our enemy as best as possible. Thus the need for reliable information on MS was one of the first points that we all agreed on.
Leading a healthy lifestyle (nutritious and clean food, exercise/movement to get the blood flowing, rest/relaxation and not forgetting treatment) that fits our own conditions and likes was another.
Finding balance between activity and rest is needed in order to help the body and thus the nervous system relax and repair what it can be repaired. Fatigue being one of our “arch-enemies”, resting enough is paramount, as to also help with general wellbeing, better symptom management and a clear mind.
We all agreed that prevention is more important, and that we each need to design our own lifestyles, according to our bodies needs and personal preferences. The emphasis was put on health and wellbeing.
Being our own best friend and always finding balance and support within is another readjustment and staying-ready tool. The most important contributor to our emotional, mental and general body health is ourselves. No one can help us if we’re not willing to play our part, if we’re not letting people be next to us. At the same time, we agreed that things change, so the most stable rock that we have is our own self. When everything else fails or disappears, we will always have ourselves. Be friends with our own person. Our body is already putting up a fight with MS.
Having systems in place and daily routines are also of great help (more about how our brains help us with that HERE), as they automatize and save time with our daily activities: saving energy and easing up cognitive input. Systems are of great use for almost everything you might think of: have one in case of a relapse (who to call, what to take to the hospital, what comforts you, things to say/ask/do, etc), one for morning and one for evening routines (train your mind to do certain things without thinking, you’ll save energy; remember to be flexible though, allow space for adjustments), or for anything you might have going on in your life. Personalize them.
Last, but not least, having a support group to reach to in times of need is also important. We thought of having a group of peers, of fellow young MSers who will be able to understand and listen to you without judging. The feeling of belonging is very important, especially when you might feel out of place because of something MS-related.
After all this was said and done (noted down :) ), we agreed on the need to have practical advice to give fellow young MSers. Each of us was asked to think of ways to adapt what was discussed to our own local contexts, to draw inspiration from all these ideas and see what we come up with as to best serve the interests of young people with MS in our countries.
We thought about creating toolkits for the Young People’s Network, to be used in things like goal setting, accomplishing dreams, relationships, career, disclosure etc. Email was identified as the best way of communicating between us, as were moderated discussion groups and the influence of young people’s advocates that can empower and help with supporting one another facing MS.
We came to talk about empowerment tools like access to jobs, courses and anything that will help a young MSer become who s/he wants to become, while staying an active member of society for as long as possible and with the most benefits (ex: financial security, emotional wellbeing, mental health, healthy relationships, etc).
We were encouraged to imitate how the EMSP network of young people came to be and draw inspiration from that in order to replicate the system into our respective countries. Change always starts with and within a community.
Each group thought of ways to attract YP to join the larger community. We ended up with ideas like:
- create workshops on YP MS and life issues (keep it relevant), practical advice to their problems;
- somehow connect all / national groups into one coherent network that supports and empowers young people with MS in Europe;
- stay in touch within each region (exchange ideas and know-how);
- act like experts in your own local networks, providing insightful and useful information while remaining approachable and adding a personal touch;
- allow each member to feel welcome and like they belong, activating and organizing YPG in each country, get people on local / national level together (events, join in activities);
- give examples, offer templates, share practice, inspire - be an example and show / share other examples from the rest of the people in YPN;
- write articles and advertise them (get them to the people who need them most),
- focus on delivering inspirational messages (ex: Lori, Steiner) and on the psycho-social aspects of MS (YP are part of friend, work and family groups - how does MS affect all that? Find ways to make things better);
- discuss what the message will be about in your area and find ways to optimistically explain to YP that they too can climb their own “Mount Everest”;
- find what’s missing in our countries (the “blind-spot”) and come up with a plan / ideas.
Remember that we are not our MS. It is just a disease, an imbalance inside our body. We are all much more that that. Reimagine our ambitions and create new ways in which we can achieve them. Become the architects of our own lifestyle. Design our road to personal independence. We are #strongerthanMS.
Thank you & it was a real inspiration meeting all of you,
Denisa Paslaru (Alexandra Celic - alias)
P.S. Feel free to add or comment upon all the things written above. Collaboration is the foundation of growth.
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