Nov 28 2012
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Emotions

Happiness Starts Here…

I had a lovely response from yesterday’s post – thank you to those who took time to comment. This got me thinking about gratitude. My recent work and health situation has taken a lot of my energy and it is all too easy to forget that for 90% of the time, life is just fine.

Like mindfulness, it is about taking pleasure in all things in the present moment and being grateful. It means not dwelling on perceived hurts, slights, comments. They have happened, they are the past. To drag the past into the future is to set yourself up for failure.

So today, I want to give myself a kick up the backside and jot down everything I have to be grateful for:

  • My family – they are incredible and give me an enormous amount of strength and confidence.
  • My friends – who have been so supportive through this difficult time. They are always there for me.
  • The NHS – especially the MS team. I don’t know where I would be without their help, advice and shoulders to cry on.
  • My health – strange to be grateful for this. I have MS, but it could have been worse. Much worse. I still walk, I still have my sight, I am still independent.

These are only the main points. I also have a lovely house, a comfy sofa, a huge stack of books to enjoy and a firm belief that life will get better. My MS is almost under control with medication, bar a few hiccups. The work situation will be history soon enough. The Teenager is growing up to be a darn fine young man. A fantastic friend made me a Shepherd’s pie and cake at the weekend when I was poorly. Seems to me I’m actually very fortunate.

Sure, we all get dark days. I know I do. Days when the situation seems hopeless. And that’s fine too – we’re all entitled to feel sorry for ourselves now and again. But when the bad days start to outweigh the good ones, that’s when you have to act. The famous phrase is that we don’t regret what we have done in life, but what we didn’t do.

This situation will pass. Life will move on. Will it all matter a year from now? I doubt it.

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Nov 27 2012
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Emotions

Right Here, Right Now

I am stressed. And if you follow this blog, you probably already know that. There’s far too much going on, and my brain is in risk of imploding.

Losing my job has unsettled me far more than I expected. I don’t feel safe or secure. I know I have continuing employment, thanks to my friend, but it’s a stop-gap. I worry about money, about  when/if I will have a full-blown relapse, about the future. This has to stop.

So I have decided to try to live much more in the present. Right here, right now. I don’t know about you, but my mind starts whirring over as soon as my alarm goes off in the morning. Standing in the shower, I go over my fears, what I should have said to someone but didn’t, my worries, everything. By the time I make my first coffee, I’m bogged down with stress. Surely not the best way to start the day.

By trying to yank my mind back to this present moment as much as I can, I am hoping to stay focused, serene and stress-free.  To start with, it is difficult. Our minds like to go wandering about, poking into all the dark places. But then we miss the beauty of the present. We live life only by reviewing the past, which can get pretty tedious.

At the shops yesterday, I tried it out. It’s fabulous! I noticed things I don’t normally see. I appreciated beauty more, rather than constantly thinking, analysing and brooding. I have applied it to my work, too, with great results. I have four weeks left in my old job and I want to give my absolute best, as a matter of principle.

In some ways, MS helps with living day to day. I know, not always in a good way. We worry about every new symptom, every little tingling or numbness or something not working the way it should. But in another way, MS can help us appreciate the good things in life. A day with fewer symptoms than before, or a good catch up with a friend or simply feeling that life isn’t that bad after all. MS really does put life into perspective.

Life is short. Life could be worse.

 

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Nov 26 2012
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Daily Life

Christmas All Wrapped Up

Well, possible relapse to one side, I am sadly excited to report I have Christmas all wrapped up.

This time last year, I was ‘lucky’. I was on my second course of steroids for yet another relapse and I was flying. I couldn’t sleep, I had extreme amounts of energy and I was absolutely buzzing. I would wake at 4am every morning and, possessed with a demon drive, I wouldn’t get to sleep til gone midnight. My house has never been so clean – all that energy had to go somewhere.

The lightbulbs were dusted, the skirting boards washed down and every single bit of cutlery cleaned to within an inch of its life. I put the tree up one morning at 5am. It was fully decorated and lit by 6am. I whizzed around supermarkets, wrote endless lists and had everything planned with military precision. Only problem was, once the steroids had left my system, I was a rag doll, limp and lifeless, with a fixed grin on my face.

This year, I have fulfilled my steroid quota, so no bonus energy for me. With that in mind, and with the spectre of a relapse still looming (is it or isn’t it, darn it??), I need to get Christmas sorted, just in case. So yesterday, I finished my present shopping, chose wrapping paper and tasteful ribbon and even rounded the trip off with a quick visit to Starbucks, The Teenager in tow. I had bribed him with a chocolate shortbread and one of those strawberry drinks with squirty cream on top.

This Christmas, the theme in my house is ‘Scandinavian Minimalism’, cleverly hiding the fact I have no energy to loop endless decorations onto a huge tree. I bought two small trees and decorated them simply, with lots of white lights and nothing else. I found a sculpture of a reindeer made from driftwood and will be wearing a Sarah Lund jumper for most of December. I will disguise my tiredness with Nordic gloominess and a contemplative demeanor. Meatballs and cloudberry juice will be served, along with almond biscuits and salted liquorice.

One thought keeps recurring though. Can I save up my steroid quota next year and use them at Christmas? Mandatory steroids for all those with MS! A new campaign? Right, where’s the Akavit? God Jul!

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Nov 25 2012
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Emotions

Happy Anniversary, MS (you suck)

cream pie on faceHey, MS, Happy 6 Month Anniversary! After a year of hell, I was officially diagnosed on 25th May. I don’t need to tell most of you how horrendous the diagnostic process can be, suffice to say I am overjoyed never, ever to have to go through a lumbar puncture again. Have you seen those needles?

Having MS sweep into your life is like having an ugly, unwanted house-guest move in with two huge suitcases and the kitchen sink. For ever. No matter how much you try to get on with life, work around them and keep ignoring them in the hope they will go away, they stick around.

Not content with that, they inflict pain on you mercilessly in unexpected ways, physically, mentally and emotionally. They rack up extra costs, they stop you going out as much as before and they chuck out your high heels (that was a cheap, low shot, MS). They rob you of your health, your confidence and your zest. They frighten your family and taunt you about your diminishing prospects.

If MS were a person, they’d be arrested and banged up for life.

So how do I feel, six months on? The absolute permanence of MS horrifies me. It will never go away. The progression of it, too,  is something I tuck away in the furthest reaches of my mind, only to be thought about in very dark moments. I hate the constant fear, the gnawing anxiety of a relapse just around the corner. I hate the way MS has shaken my life so completely to its foundations that nothing is the same as before.

I know, I need to embrace this illness. I should accept that MS is now indelibly imprinted on my life. I need to Think Positive! Meditate, do yoga, give up the sweets, the alcohol, the stress. Don’t we all? If pushed, I would say that the one thing MS has given me is the ability to appreciate things more. Not in a hippy-dippy, mung-bean eating way – just enjoying small pockets of time when everything is ok, I don’t take so much for granted now.

I am still debating whether to get a tattoo, to mark this little anniversary. Something small, just between me and MS. I want a barcode, with the words, Best Before 25/05/12. Or should that be Best After…?

 

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Nov 24 2012
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The Teenager

Going on a Long Guilt Trip

Still no let up from the crushing MS symptoms. Still don’t want to say ‘relapse’ out loud. Worst thing is though, all the guilt has come flooding back.

The Teenager has been incredible since this whole MS thing started, and has started telling his friends, ‘my mum’s got what Jack Osbourne’s got’. The height of cool.

But he crumbles sometimes, unexpectedly, and it’s the saddest thing to witness. One day I told him off for not brushing his teeth. Five minutes later I hear loud crying from upstairs. I find him frantically scrubbing his teeth, taking huge, gut-wrenching sobs. ‘I hate MS, I hate what it’s doing. I hate you having it’. My heart broke into tiny pieces.

I try my hardest to hide symptoms from him. I sleep before he gets home, stuffing the duvet down the back of the couch. I have also trained myself to cat-nap and be instantly awake the minute he comes back from school. I write down key points about his school day so I don’t forget them, such as maths test, horrible PE teacher, German homework. I use Touche Eclat under my eyes so I look more awake and his rugby kit is always, always clean and ready. It’s a matter of pride.

But the guilt is relentless. I should be doing more with him. I should take him to town after school one day for a surprise and buy him a new pair of Vans. I should plan interesting day trips. We used to love baking together (thank you, The Great British Bake Off!), but we haven’t done that in a while. I haven’t the energy to clean the kitchen afterwards. The Swedish chef from The Muppets has nothing on my son.

So, I cut corners. I pass off M&S food as my own, leaving the chopping board out as ‘proof’ of my hard work. I spring money for pizzas (cool mum!) to save cooking, I buy more treats than usual and make sure his Lynx supply is fully stocked. I allow lots of sleepovers, so I know he’s having fun, but it gives me much-needed space too.  I make sure I am there for him, as much as I can be.

I hate what MS is doing to our little family. If I can just hold everything together, we will be fine. And maybe I won’t need to have Dominos on speed dial…

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