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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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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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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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.’

‘Meh.’

(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…

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Help Wanted….

craftyFor the first time in years, I have an awful lot of time on my hands.

MS took my partner, my job and my career path away from me (don’t worry, I’m not about to throw another pity party…).

Also, after six years, I’ve finally finished studying, plus The Teenager has got to the age where he’d rather pull out his eyelashes one by one than sit with me of an evening, supping hot chocolate and watching Grand Designs repeats. Not that we ever actually did that, but you know what I mean.

So this leaves me in a rather weird position. Having no partner clears an awful lot of time. No more, ‘you choose what we’re doing tonight’, ‘no, you choose’. No more planning blissful weekends window-shopping or sitting in little cafes staring into each others eyes. Not that we ever actually did that….

Having lost my career-path job and hence my future career, I now work in a job that I don’t really take home with me, apart from gallons of mud on my boots when I’m on site and a head full of dust.

So now I am in want of a hobby, and this is where you guys come in. I need your suggestions and you all probably know me better than I know myself. First the ones I can’t do – no more knitting (numb right hand), no more sewing machine (wasn’t clever enough to master it), nothing that takes a lot of space (tiny cottage, bonkers cat). I’ve tried baking but am so tired in the evenings, the cake mix ends up on the floor and the pile of washing up makes me weep.

I’m saving up for a saxaphone, but in the meantime I’m looking for something creative. I scanned all the crafty magazines at my local newsagents this morning and my brain got too full to concentrate so I grabbed my newspaper and left.

What do you think? Something I can do at the kitchen table with the radio humming gently in the background? My current hobby involves dossing on the sofa, flicking popcorn at the telly and talking to myself. Help wanted….

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