Today, on International Women’s Day, we celebrate the impact females from our country and internationally have had on the world. I’d like us to also celebrate how damn amazing women with MS are and give you my experience of the past few years.
I vividly remember saying to a friend two Christmases ago that I thought there was something going on with my body. Soon after, MS came crashing into my life and the lives of my husband, my children, my family, my friends and my work colleagues. As we’ve journeyed together, as much as I have changed I also I see how the people in my life have changed too. The experience has changed me to such an extent that there are times when I’m overwhelmed with self-pity, wallow in ‘this is only about me’ focusing on who I used to be. But it isn’t just about me, it is about Us.
This Mother’s Day I’ll spend time enjoying time with family, reflecting on my life and the different roles I have. And then I’ll think about my MS and its progression. I compare myself to this time last year. I was working full time, I walked without an aid, I was driving my car and I loved walking the promenade on holidays. There are many activities I still do but now, there are limitations that I never imagined. MS has brought pain at an extraordinary level, cognitive/bladder/lung/mobility issues and overwhelming fatigue. My MS is Primary Progressive and it feels like I haven’t had a day’s break from it in six years. And if I’ve not had a break, my family hasn’t either. They’ve had to deal with a changed mother and wife, home life being different, changed plans. We all know how difficult it can be to deal with change when we want it, how much more so when it’s something we DON’t want! No matter how much I want them to look at me and see “my mother/my wife, a strong independent woman” I’m not like I was. I am now more dependent on others. While I am grateful for the help of my family and friends and would be lost without them, I’m finding it really hard. Before all this, I was always the ‘go to’ person, the fixer, the do-er. These limitations are new and I’m doing what I can to get comfortable with the changes.
I have always been adamant that my children and my husband will not be my Carer (again back to changing roles). I want them to continue being children and my husband, my partner. I want to be their mother and his wife. Yes, down the line there will have to be changes made and I worry more than others about my future. But I am still a mother and someone’s wife. When I’m in a slump, I think how ‘this’ is not what anyone signed up to and I long to take away the fear and inject a great big dose of laughter back in. Yet, we are a powerful clan, we have ‘dug in’ by learning together about the changes this disease can bring to someone; we have ‘held on’ by continuing to love and support one another and seeing how well we’ve done, We, the Devereux/O’Connors are as brave as any group of Amazonians!
This Week of Women, I started by taking back some power, remembering my own gifts and using the example of other women who overcame great obstacles. Being brave isn’t always about being the loudest or the fiercest. There are times when even talking can be too much for me! Brave is saying every morning that today, I’ll try again. Today and on Mother’s Day I say to every woman with MS, you are brave and please, keep trying.
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