Being active

Last week I received an invitation to take part in the 2013 National Meeting Day panel discussion on September 28th by the MS Society of Ireland. Needlessly, I accepted straight away as ‘Being Active and Interactive’ is something that lies close to my heart.

If you’ve been part of my blogging community for a while, you already know my online involvement in regards to writing about life with multiple sclerosis as an unwelcome passenger. Because of this, adding something worthwhile to a panel discussion about how staying active and being part of an online community can lead to a very fulfilling pastime – no matter how dull or uninviting it sounds – is something I absolutely want to be part of.

As a child and teen, being involved and fighting for the good for those less well-off was something I wanted to carry into my adult life. However, after moving from Belgium to Ireland in 2002, this activity was pushed away to work hard on my career. I studied, did lots of overtime and enjoyed every second of it.

When I was diagnosed with relapsing/remitting MS in 2005, I was still employed and tried to do as good a job as before. I had many hobbies and friends to share time with after work. As the years went on, and MS took a over a larger part of my life, I noticed how difficult it became to keep those same hobbies alive.

At the end of 2009 I had to face up to a new reality: because of MS, I became a liability at work and I had to quit my job. How to spend my days became a big question, one I didn’t feel like answering just then. MS once again decided for me: during the first year of being retired, ‘just being’ became a calling. New hobbies were introduced as it seemed I had to catch up on the almighty RRS (resting, relaxing and sleeping), and nothing would deter me from this.

As time went on however, I became more attuned to what went on in the world of MS from being online much, as I started to see that perhaps I could find a niche in trying to be a spokesperson, an advocate for better disability services. After all, this was something I always wanted to do.

I also started blogging and while I knew I would write about life with MS, I also wanted to write about life in Ireland. I looked at Ireland in a different view than those who had lived here since birth and adding one or two stories about the silly, funny and darker days would balance out the monotony of writing about being disabled on my blog. As I kept on writing blog posts, I started to feel elevated, freed from feeling ‘the only one who is going through this MS hell’. Not only was I writing to help others, but I began to understand how writing was having a very positive influence on me.

Being active online is not solely being on Facebook to talk to friends and spread MS awareness, or using Skype to talk to family. By using a laptop as a very important tool to highlight MS or disability issues to the online community, or to email the government to advocate and fight for better disability services, I am helping to spread important information. I can do so from my bed, the kitchen table, the neurology waiting room and anywhere else, and it has the same impact as if I would do so from a desk at work.

There is no need to be physically present; advocating online is about as easy as it gets: by writing blog posts about what is lacking in neurological services, or with the help of the MS Society of Ireland, being interviewed at home by newspapers to highlight the need for specialized MS medication, I am adding a personal touch to news reports that spoke of that very need.

The power of the pen is a powerful one indeed; it is a cheap but rewarding diversion that will fill your days no end. Talking online with politicians and other disability groups followed and together with the hard work of many other volunteers and advocates, it began to bare fruits. Granted, a lot of asking, rethinking and waiting for answers might follow, but the feeling I get from advocating is probably the most rewarding feeling I have ever felt.

Also, when you find yourself on sick leave or retired from work and looking for a deserved cause to fight for, why not use your own experience, life stories, hopes and wishes? For example, when I feel physically well enough, I try to attend conferences in regards to disabilities or MS. Even when I don’t want my MS to be part of every minute of every day, I attend those in the name of others. When I can’t benefit from it, perhaps someone else will.

MS need never be the end of your interests, your hobbies and your life or lifestyle; as you go on, you find new interests and hobbies (even though I refused to believe this myself when first diagnosed!). People with MS can and will find other ways to keep active. Even if or when your body refuses to cooperate, or your fatigue levels are erratic at the best of times (like my own), there is a hobby, a niche, a new way of living out there. Finding it may take some time, but being active and interactive is fulfilling, even when you don’t believe so at first.

For more info, please go to: http://www.ms-society.ie/pages/what-we-do/national-meeting-2013© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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3 Comments

  1. suej says:

    I completely agree with being as active and interactive as you can, in a way that suits you. Which may be more mentally active than physically. It takes you out of yourself, gives you things to look forward to, gives you fulfilment. I have never wanted to be defined by MS, I am still me and want to be able to do things that are about me and those I am involved with. MS is an inconvenience that I have to learn to live with, and adapt myself to.

    Like

    • Billie says:

      Same here Sue! MS is not me, it is a part of my brain but that is where the relationship ends. From day one my then-boyfriend said ‘You may have MS, but you’re still sexy!’ and somehow this is always how I want to be named: I may have MS, but I am still me (a little bit less sexy after 8,5 years with this in my brain :))

      Like

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