Category Archives: Emotions

Mar 31 2013
4 Comments
Emotions

Cutting Ourselves Some Slack…

The last blog post brought up some interesting comments. I wrote about being too hard on myself for not being able to do everything the same way as pre-MS and it seems I’m not alone in this.

I’ve been carrying on as if everything is the same as before, leading only to anger and frustration when things don’t go according to plan.

Take the other night. The Teenager was away, I was all dressed up in my arty clothes and jewellery ready to hang out in an  arty wine bar with a friend. So far so good. I was feeling on top of the world. I was doing what everyone else takes for granted.

Two small glasses of wine and a couple of slices of caramelised onion  and rocket pizza later, I was ready to swap my flats for slippers and settle down for a night in front of the telly. I went home incredulous at the early hour and sought solace in a family-sized Bubbly chocolate bar, but it did little to assuage my feelings of sadness and anger at being such a lightweight.

Time for a re-think. MS smashes into our lives, obliterating everything in its path. We can go under or resurface, tweaking our lives in new ways.

I may not be able to go out as much, but when I do, I make the effort to hang out with true friends, the ones who’ve stuck by me through it all. I might not be able to (or want to) schlep round the supermarket, but oh, the joys of Waitrose online shopping certainly make up for it.

Housework? Clever lighting and candles hide the dust. Stuck on the sofa, pinned down by MS fatigue? Scrolling through Twitter on my phone, connecting with similar MSers across the world makes me feel far less alone. The Teenager has more of my undivided attention as life has slowed down.

MS makes you reevaluate your life. What is truly important? What will make me happier and more fulfilled? How can I improve my life despite MS?

We are all doing just fine. Most of us are still juggling everyday life as best we can as well as living with a serious neurological illness. We should be proud of ourselves. We got knocked down, but we get back up again. And again.

A big high-five to everyone.

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Mar 07 2013
20 Comments
Emotions

Chronically Ill, Terminally Depressing?

I'm fineThe builder popped over to see me after work the other day. I was on my sofa, floored by MS fatigue, snuggled into my duvet, watching trashy tv.

As soon as he walked in and saw me, he took a step back, a look of dismay on his face, ‘God, I feel depressed just seeing you there like that.’

If he’d slapped me across the face with a wet fish, it couldn’t have hurt more. I protested, made a joke about it, but it touched a very raw nerve.

I don’t want to be depressing. I don’t want to be that person on the other side of an invisible divide. I saw myself through his eyes and didn’t like what I saw. MS has shoved me under ice. I look the same, but I’m trapped, banging on that ice, yelling pointlessly for my friends on the surface to hear me.

I’ve had to absorb a lot of changes into my life since MS smashed into it like an unwanted gatecrasher at my party. Some of them are huge, but most are small changes I now take for granted – the afternoon naps, the slower pace of walking, the brain mush. To me they are now normal. But seeing myself from someone else’s viewpoint brings me up short. I can see just how much I have changed and I hate it.

Before MS, I was always on the go. I travelled the world, had incredible adventures, and I’ve been strong, independent and vibrant. Looking at myself now, I can see I have I’ve become a shadow of that. My house has become my refuge and I spend far too much time in it. It is comforting. No one can see me trip, hold on to the banisters, drop another glass. I feel safe here.

I know the builder didn’t mean to hurt with his comment. I probably needed to hear it. I want to get my zest for life back. MS is a hefty ball and chain to drag through life, but at least if I’m facing forward, I can’t see it, even though I know it’s there.

At the moment I am standing outside the party, nose pressed to the window, watching everyone else’s lives unfolding. It’s about time I joined in again.

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Feb 16 2013
8 Comments
Emotions

Blogging Is The Best Therapy….

Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.

I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.

Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.

I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.

Then everything changed.

Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.

Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).

So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..

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Feb 13 2013
12 Comments
Emotions

I Stumble, Therefore I Am

super squirrelI caught the tail-end of a programme the other day in which a man with a prosthetic foot was being interviewed. He was asked if, should a miracle cure become available, would he take it?

He was vociferous in his rejection of this – he was perfectly happy and his ‘disability’ had made him who he was.

Powerful stuff. Mulling it over, I came to a surprising conclusion. MS has shaped and moulded me in completely unexpected and positive ways and given me courage where previously I had very little.

When I was younger I was in a terrible, near-fatal car crash. I vowed to change my life forever if I recovered, and I would never take anything for granted again.

A year later, the scars had almost healed, I could walk properly and I was back to normal. Did I carry that message and always remember how fragile life was? Did I heck. But with something like MS, there is no end point, no point at which you can forget, so we really do need to change our lives and keep changing them, whilst appreciating every small victory and achievement.

I used to hate MS, until I realised that by hating it, I was hating a fundamental part of myself and this was essentially self-loathing. MS is me and I am MS. It is not a separate entity. I went through a dark, lonely, terrifying grieving process and hit rock bottom not just once but repeatedly.

When a chink of light appeared, I was on the up again. I frequently joke that when you get diagnosed with MS, anything else is immaterial. You can cope with pretty much everything life has to throw at you. And I think that is true and a powerful lesson to learn at my age, rather than as a wistful pensioner looking back over a life less-lived.

MS has given me a kick up the backside. It has made me speak up for myself, it has made me more confident and less willing to accept shabby behaviour. My stumbling, my tingling, and dodgy hands are now part of me. I stumble, therefore I am…….

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Feb 01 2013
2 Comments
Emotions

Happy Now?

I’ve had a tough couple of days. My old nemesis MS fatigue has dropped in for a visit and shows no signs of taking the hint and shoving off, the scoundrel. But in my new, positive spirit, I’m just trucking along, trying to make the best of it.

To cheer me up, I read an article I cut out of  January’s Glamour magazine – 100 Things To Make You Happy and here’s some of what I have taken on board:

  • Become a regular somewhere – I am now a regular at several cafes due to my (at times alarming) Americano addiction, and it’s nice to have a chat and pass the time of day.
  • Get a cute fix – I regularly google ‘animals doing funny things’ and ‘cute baby animals’. I also google ‘ugly babies’. I know, I know, that’s terrible. But try it – I dare you not to smile.
  • Watch ‘The 19.57 From Euston’ on YouTube – a man hires a singing group to perform on the London underground while he proposes to his girlfriend – soooo sweet.
  • Put clean sheets on the bed – possibly one of my most favourite thing to do. Finish off with a squirt of perfume or Febreze if you’re a cheapskate.
  • Buy a smart new notebook – I just bought two and am cultivating an intelligent air in cafes (see above), scribbling down my bon mots and musings. Pretentious, moi?
  • Write down, in new notebook, three things that made you happy each day- it really works.
  • Use a zingy shower gel to get you going in the morning – this works too, but I have to remember not to grab The Teenager’s Lynx by mistake. Not nice.
  • Try a new thing every day – a different newspaper, a new route somewhere, anything. This is great fun and really perks up your mind. Mind you, my builder friend has bought me a chicken curry pie for my lunch. I’ve never tried one before and I’m not sure I want to….

Am I happy now? You betcha.  The article ends on these facts for all us worriers out there:

  • 39% of things you worry about will never happen
  • 32% of things you worry about have already happened
  • 9% (ONLY 9%!!) of worries actually relate to important issues.

So, I’m off to the cafe, notebook and pen in hand. Perhaps I’ll try a different coffee, shake things up a little. The excitement! And it might, just might  keep me awake a bit longer…

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