Tag Archives: trigeminal neuralgia

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.

Tagged , , , , ,

The Trouble With Men…..

Peppa PigI love working with men.

The way they just point and snigger when I trip over and then shout out, ‘yeah, mind the step love, eh?’

And when they ask ‘is the leccy off? Can’t see the kettle on?’

I love that they can talk animatedly about cars for hours. Or motorbikes. Or the quickest way from A to B (very, very heated arguments).

What I’m not so enamoured with is their total disregard for their health:

‘Boss, what’s wrong?’

‘Oh nothing. Just that neuralgia on my face back again. And I’m soooooo tired. Do you want that last piece of chocolate twist?’

‘Really??? Have you been to the doctor?’

‘Ha! Like, no. Mind you, I’m totally spaced out on the painkillers. Neurofen are the best. Nice.’


(I then gear up for full-on nagging mode) ‘You do know, don’t you, you’re 8 years off 50. 50!!! You can’t take these things for granted….’

‘Yeah, yeah, whatever. Are you having that last bit or not?’

I love my boss. Not in that way. We’ve known each other for almost a decade. We get on brilliantly. But I worry about him. I’m probably healthier than he is. He said to me this morning. ‘it’s bonkers, it’s as if I just have to get home, have to lie down, and nothing else matters but lying down on the sofa.’. Um, yeah, I’m with you on that one.

So what should I do? I’ve already been with him to hospital the last time he had the nerve pain. This time round, his eye is shutting and he can’t open it properly. He looks worn out. I’ve emailed him the NHS guidelines about neuralgia. When I left him at work today, he was exhausted, turning on the cement mixer to finish the brick-work.

My lovely twitter friend has started a hashtag, #Boss2Dr – if he listens, I will buy him a Peppa Pig Easter egg (don’t laugh, he adores that pig).

As for me, I’m back in work tomorrow…

Tagged , , ,