Tag Archives: support

The Darker The Shadow, The Stronger The Light …

limboI’ve had the most incredible week.

Believe it or not, my podgy-moon-face has been in three different films, all raising awareness about MS in different ways.

First up, a video at my local teaching hospital to show trainee doctors a real-life MS scenario. Let’s just say, I hope I haven’t put them off neurology, gah.

Second, a film for The Newly-Diagnosed. Hopefully I came across as reassuring and positive about MS. A tricky place to be as we all have to go some sort of mourning period? I know I did and it lasted well over two years.

Third, me and The Teenager went to London yesterday. I was taking part in a film for World MS Day, about coming to terms with an MS diagnosis and all it entails.

It’s all been busy and illuminating. We went down the day before so we could be calm and collected before Filming. Plus The Teenager has GCSE exams looming next week, so he packed  a bag full of notes and a lot of anxiety. Mind you, all notes went out the window when he spied the massive telly on the wall in our hotel room, conveniently placed in front of his bed. And the chocolate vending machines in the foyer.

Anyway, I met some phenomenal people, all living well with MS. Despite MS? And that’s the thing. We’re all so different. We all have wildly varying MS stories, but we’ve all forged an ultimately positive path.

I’ll be honest, I often feel isolated. I’m a divorced, single parent with MS (get the violins out, meh). Yet there is a wonderful network of people who will draw you towards them, putting an arm around you and tell you, ‘no, you are not alone.’

MS casts a very dark shadows on our lives – on our relationships, our family, our work, our … very being. Who are we now? Now we have MS?

Well, the good news is, if you are in the shadows, there are so many people out there holding out a friendly hand. No one has to go through MS alone.

I remember, back in the Bad Old Days, when fatigue and relapses pinned me to my sofa. I sent out a tweet, ‘I need support’. Well. The support came flooding back. I was never again alone.

And that’s the thing. For all of us who have been through the darkest days, can we light the way for the peeps who are going through the same thing?

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Got MS? Help Yourself!

digmannJen Digmann is my guest blogger today. Jen and her husband both have MS and use their experiences to help empower others. Check out their website here.  

When I decided to marry Dan, I knew there would be a few certainties in my future. I knew I would be hearing and seeing a lot from Mr. Bruce Springsteen. Likewise for baseball games. Both which I’ve done gladly.

Another thing I knew was I would become the co-leader of Dan’s MS self-help group. I gladly have done that as well After all, I also am living with Multiple Sclerosis.

Something I always tell members of our group is that I firmly believe the more you know about this unpredictable disease of the central nervous system, the better you are able to live with it.

I am lucky that information about MS is pretty easy to obtain. However, after living with the disease for nearly 17 years, I’ve realized that finding credible, accurate information may take a little more work. With more than 400,000 Americans also having MS, you are bound to hear the occasional, “Yeah, my aunt (or neighbor, coworker, or other relative) also has that and she started taking cold pickle juice baths and only eats orange-colored food, and she’s cured!”

Well-meaning advice, but not exactly the most reliable resource.

A person with MS can talk with his or her neurologist, check out trustworthy websites like nmss.org or healthline.com, or look into self-help groups.

Being the co-leader of one such group for the past eight years has been both a privilege and an awesome way to meet others who understand what I’m living with and to also constantly learn about MS. And sometimes I may think Dan and I know most everything about the disease, but then I realize there is still a lot we can learn.

As the meeting was ending, I quipped something about my trigeminal neuralgia, and sure enough Sherri chimed in how miserable that condition is. I never knew she was dealing with this too! It almost felt like a put-on-another-pot-of-coffee-we’re-not-done-yet kind of moment. Don’t you love meetings like that?

She and I were talking about this obscure symptom, and our group’s general consensus was: MS is strange like that. This statement led Dan to talk about the tight banded feeling he was experiencing in his midsection. “Yep, that sure sounds like the MS Hug to me,” Dawn and Rhoda enthusiastically agreed. Really, we needed that coffee.

Next thing you know, we were hurried out of our meeting space because the attendees for the next event were there.

As we gathered up our belongings, we chuckled about the great friendships we’ve made because of Multiple Sclerosis. And I couldn’t help but smile a little more as I reflected on how in eight years I’ve become a baseball watching Springsteen fan who looks forward to co-leading a great meeting on the second Saturday of every month.

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Transformation. Complete?

When your world is turned upside downTomorrow it will be exactly a year since I was unceremoniously ushered out of the MS Limboland waiting room and into a whole new world of clinically definite multiple sclerosis.

MS has had an impact upon every area of my life. Everything has been transformed and I’m not the same person I was last May, but for my MS anniversary, I am going to concentrate on the positive changes.

I’ve done my grieving, I’ve cried myself hoarse. I could either live out a sad, bitter life, railing against the injustice of it all or seize this opportunity to change my life for the better.

I’m full of gratitude for the support network I have – the family and friends who stuck by me through the dark times. The ones who made a swift exit? Probably for the best, eh? I’m indebted to all the healthcare staff who pulled me through and who continue to support me and I’ve made a whole new circle of brilliant friends.

Being bullied at work and subsequently sacked simply for having MS showed me that when I’m pushed into a corner, I can still come out fighting. Ironically, as my colleagues were trying to crush my spirit, the whole experience made me stronger, braver and has restored my self-esteem.

Probably the biggest transformation though, is within my own character. I’m no longer willing to live a life according to what is ‘normal’ or what is expected of me. I am choosing my own path. For far too long I have gone through life reacting to the whims and actions of other people, forgetting in all the chaos that in fact, I had a choice all along.

It took something far bigger than those people to turn my world upside down and to put into perspective just how fleeting and how beautiful life is. MS is here to stay, for now, and as long as it does, we have to learn to get along. It’s part of me, so I can’t hate it. I have to keep learning to adapt, take the good days with the bad. Is the transformation complete? You betcha. Phase One at least….

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