Monthly Archives: March 2014

Mar 10 2014
16 Comments
Emotions

MS Replies…

MS repliesDear Stumbling,

Thank you for your kind and thought-provoking letter (see, I do read your blog, so ner ner ner ner ner, as you so eloquently put it). I think it’s time we had a little chat, don’t you? Mind the step and pull up a chair.

Look, between you and me, I know I wasn’t invited. I’m never exactly welcomed with open arms. I mean, really?

But let’s get a few things straight. Who told you life was going to be easy? You can’t turn the clock back and I’m here to stay, so you may as well get used to me hanging around, whether you like it or not (harsh but true).

Which leads me neatly to my next point. Sure, I’m pretty nasty. I mess up your body and put your brain in a blender. But I’ve been kind to you too. Don’t laugh – without me, would you really appreciate life so much more than you used to? Would you really make the most of every day? I don’t think so. You were quite happily trucking along, making plans, blah blah blah, without a care in the world. Life. Is. Not. That. Simple.

See? I helped you change your life, didn’t I? Yes, I know you lost everything, but we’ll run through that, shall we? Career? If your employer was going to treat you like that, they weren’t worth it anyway. Ditto partner. He scarpered at the first sign of trouble. I saved you the pain at a future date. And stop worrying about finding someone new. Find yourself first, then think about it. So in a strange kind of way, I simply hastened the process of clearing your life out, didn’t I?

And I really do think you should thank me for that. Sure, I prod you and push you over. And? I see you laughing at it now. You turned it round. You used to trip and curse every single time. Now you shrug it off. Life is all about adapting, every single day. Nothing stays the same. And if that’s the only thing I can teach you, then I’m happy.

You’re doing ok. You faced up to me (and to be frank, you’re a teeny bit scary when you do that). I think you are much more powerful than before, despite feeling weaker. Have a think about it.

Anyway, I’ll leave you with that. And please, no more pity parties. Yawn.

Yours forever,

MS

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Mar 08 2014
20 Comments
Emotions

Dear MS…

Dear MSDear MS,

Were you having a laugh? I used to speak three languages, yet that morning three years ago, I woke up unable to speak English.

You threw sand in my eyes and made me walk funny.

And I certainly didn’t want to have that MRI, nor the Medieval lumbar puncture that followed.

But, you know what? You’re here now, so I might as well get used to having you around, you pesky minx, you.

So, keep on making my hand numb (haha), keep on forcing me to sit down and fall asleep no matter what the situation (eek), keep on making me avoid any direct sunlight as if I were a vampire.

You are a parasite and I hate you. You have ruined my life. But sadly, you are part of me now so we might as well get on. I will accept the enforced sleep breaks, the dodgy walking, the tripping. But I will never, ever accept the worst you can throw at me. Who cares if I no longer speak fluent Norwegian? I can still read it, so ner ner ner ner ner.

Who cares if I can no longer write 3000 word essays? I graduated last year. Yah. Boo.Sucks.

You are a leech. You destroy everything you touch. Families, relationships, careers. You took everything from me  and you were unrelenting in your destructive mission.

So you chewed me up and spat me out, Dear MS. I lost my partner, my job, my career, most of my friends. But I win. I will be a better Me.

I didn’t ask for you to appear and gnaw at my nerve endings. It’s ironic. I feel you. I feel emotions. And that will not end, no matter what you throw at me.

Yours,

Stumbling XXX

 

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Mar 06 2014
2 Comments
My Ramblings

This Is Me

Ta daI have had some insightful conversations this week with people who have only known me since my MS diagnosis.

Without wanting to inflate my dented, bruised ego, they have all remarked on how positive I am.

Who, me? (looks behind, just in case). Well, yes, I guess I am in some ways.

“O wad some Power the giftie gie us To see oursels as ithers see us” as Robert Burns, that famous Scottish poet wrote – or in other words, wouldn’t it be fab to see how we appear to other people?

Well, this has certainly helped my little, fragmented and shattered to smithereens sense of self. I too often concentrate on my shortcomings, my weaknesses, my complete inability to fit in with my socio-economic grouping.

So, hey, this is me. This is me with MS, this is me living with MS.

I’m not actually doing that badly. The dark tunnel I went through is coming to an end. I’m not the same person I was, starting from that definitive date in July 2011, the day I woke up unable to speak properly (I mean, really, how dare MS do that to me?).

I have been through every single grieving stage, and then some. I have held countless pity parties. I have gulped and cried into my wine glass  too many times to mention (plastic glasses, now, of course).

But when I say, This Is Me, who exactly am I now? Am I new and improved? Am I better than before? Hmm. Let’s switch viewpoints. How do I appear to others? That might give me a handy guide as to how I am doing.

Well, I am Campaigning. I am Getting Involved. I am Informed. That aside, what does the future hold, for me, personally?

If I thought I had enough problems trying to date as a divorced single mother of 40, how on earth can I push my way through the dating Meat Market as a 40 year old, divorced, single mother with a degenerative illness, MS? Ahem, not that finding a partner is uppermost in my thoughts (much).

No. As I said to someone today, the best thing MS has done for me, is it has allowed me to battle something alone. To find my own strength and find comfort in being Alone. I don’t want ‘Another Half’. I don’t need to ‘Feel Complete’.

When I find that career and that special other person, it will be on equal terms. I don’t need to be rescued. I just need someone to say. ‘You are you, and I like you’.

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Mar 03 2014
6 Comments
Daily Life

Mirror, Mirror, On The Wall…

mirrorI am writing this by flickering candlelight, with slightly shaky fingers (shakier than my normal MS-y fingers).

Yesterday, I had the misfortune to think that clothes shopping would be a most excellent idea. I had a bit of spare money (The Teenager was away, natch), so what could be more soothing for the soul than treating myself?

Well. On entering the store, I was accosted by a very, very, very young and very skinny slip of a thing, no doubt a size sub-zero, who asked me in a bored voice, ‘wanna sign up for our catalogue?’ Nope. ‘You looking for anyfink special, like?’ Nope. ‘Help you with anyfink?’ Nope. Um, can I shop now please? ‘yeah, whatevs’.

I shook her off and wandered round the store, picking things up and hooking them over my arm so the sizes wouldn’t show. I must have looked distinctly dodgy as a girl darted over and asked, ‘can I yelp you?’, eyeing up my bag. Nope.

I sought sanctuary in the changing room. Mistake. Big mistake. I waited for the girl on the door to finish her very important phone conversation, ‘yeah, gotta go, oh I know, loves ya, yeah, you too babes’ (rolls eyes, sighs, stomps over to me and slaps a round disc with a 5 on it into my hand). I shuffled off to the cubicle and sealed the curtains each side. Just in case.

Right. trousers. Stumble over attempting to change into them. Get the fright of my life. Who’s that person looking back at me?

It was me. In eight different, unforgiving angles. In all my glory. I slumped to the plastic chair. Really? Seriously?  That’s me side-on? I turned my face this way and that, examining my double triple chin. The fine network of wrinkles spreading out from under my eyes. I looked…..old and tired.

I gulped back the tears and took the trousers off, but not quickly enough to avoid seeing how I looked from behind, an image now seared indelibly in my brain. Pulling myself together and dabbing at my eyes, I took my stuff, paid and left.

Back home and as deflated as a popped balloon, I examined myself in every single mirror in the house, the cat trotting behind me like it was some kind of game. I googled ‘get rid of a double/triple chin fast’ and ‘how to lose 4 stone in 4 weeks’.

My tip? Dim the lights. Cheaper than a neck lift. Extra bonus – you don’t see the dust, but that’s another story…

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Mar 02 2014
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Blogging

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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