How I look at my MS differently after all these years

Joan Jordan was diagnosed with MS 10 years ago, in her latest blog Joan shares with us how she looks at her MS differently after all these years.

This could be the shortest blog in the history of MS & Me. Two words: “Watch this!”.

“To put MS in the spotlight in 2019 and speak loud and clear about the unseen impact of MS across Romania, but also the world, #APANRomania created an impressive and exciting artistic movie, especially for carers: #MyInvisibleMS - The GIFT.”

So, have you watched it yet? What did you think? I was initially a little surprised at the title. Is there some kind of reward offered to those living with MS? How can it ever be considered a GIFT?

While I try to feel happy for other people when they talk about “spoon-intensive” feats I could never achieve (like running marathons), a tiny part of me still mourns for the part now incapable of running for the train. I wonder do they actually consider my situation when they tell me that I should contemplate running 26 miles? The only way I can understand it is that the world still turns, and people are excited about their own challenges and don’t think about (or understand) mine. That’s where the GIFT comes in!

I suggest that you show this video to your loved ones, your work colleagues, your family and that person who is always trying to get you to join them for marathon training. It’s a very simple and hassle-free method of conveying what it is like to live with MS. An incident does not have to occur before you share it. Think of it as a pre-emptive solution! Holding grudges against people I expected to care about my chronic illness has not worked in the past. The person I am hurting most is myself and it’s cost me a few friendships.

Also, living with MS is not only about loss. I have been given the gift of being part of a community whom I get and gets me.

A word of caution though.

Just because somebody has MS, it does not mean that you are on the same wavelength. It’s so important that you find your tribe, regardless of age, gender or skin colour.

Of course, I am not saying that I am happy that I live with MS. That would be mad! What I am saying is having been diagnosed for 10 years and lived with symptoms for all of my adult life; it’s much easier to coexist with it than fight it. Eduard Andrei Pletea (Board Member APAN România) who has kindly given me permission to share the video nails it when he says: “Our goal with this movie is to raise awareness about all these invisible symptoms and how much they do affect us. The story is also about accepting MS, adapting and living at your best with MS by your side.”

I hope that you find a use for it in your MS toolkit and would really love to hear what you and your community think of the video. The final word goes to Eduard: “Living with MS might be very rough, way too difficult to manage but you will have to accept that you will have bad days and to love yourself more within these because blaming will not help. 

Darlings, it's not important what you have, its important what you do with what you have. So, you do have MS, what it's your next step or your super power?”. 

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