Category Archives: Emotions

Aug 08 2013
19 Comments
Emotions

This Is What MS Feels Like

lonelinessImagine you had a life-long friend.

This friend’s been with you through everything. Every high, every low. Seen you through weird and wonderful adventures across the world, the birth of your child, a near-fatal car crash.

One day, this friend turns on you. To begin with, you don’t really take much notice, you’re too busy trying to get on with life. You ignore the niggling doubts. You trust this friend implicitly, with your life. But the warning signs become hard to ignore. You’re sure they’re drugging your coffee, it’s the only thing that could explain the overwhelming fatigue. They begin messing with your mind, mixing up your thoughts, your emotions, garbling your speech.

Things escalate badly. They begin pushing you over and tripping you up. You never know when it’s going to happen and you start to live in fear. Your balance is shot to pieces, the pain is uncontrollable. You start going out less, hiding yourself at home. You’re bullied at work because of the friend, who by now is an enemy. This will ultimately be an excuse to fire you from a job you love. Friends abandon you, leaving you even more isolated. Your family can’t begin to understand what’s happening to you, no matter how many times you try to explain.

Your income drops as you have to reorganise your working hours, your social life is non-existant. Simple tasks become mountains you have no hope of scaling. Just getting through each day in one piece becomes your sole aim. Fear and loneliness are now your constant companions, keeping you up into the small hours, frantically working out what your new future will look like, if you have one at all. Every area of your life is rapidly changing beyond recognition, so fast you can barely keep up. Your son cries in his bedroom. He can’t cope and you don’t know quite how to console him when you can’t even reassure yourself.

This is what MS feels like. Your body, your friend through life who has never let you down before, attacks you from every single angle.

Drugs, treatments and a superb support network have restored some kind of order to my life, although it is not the life I had before. But those black, dark days will remain with me forever. And they may, just may, reappear at any time. Carpe diem.

Tagged , , , , ,
Jul 31 2013
43 Comments
Emotions

And This Is What You Could Have Won…..

and this is what you could have wonA post caught my eye on the MS Society forums the other day. An anonymous person wrote, ‘what would you have done if you didn’t have MS?’

There were some curt replies – ‘a futile question’, ‘this question is a bit pointless’, ‘I don’t think there’s any point wondering about this.’ But the second part of the question actually gave it a point – ‘Or have you been able to do all the things you want or wanted to do with just a few adjustments?’

I think this is perfectly reasonable to ask, especially as it was posted in the ‘new diagnosis and before diagnosis’ forum. Isn’t this what we all ask ourselves after we’ve been diagnosed?

Someone also replied that this was the same as wondering what it would have been like to be born a boy instead of a girl. Well, no, it isn’t. We’d be none the wiser if that had happened. MS generally strikes in the middle of someone’s life, there is a definite before and after.

Since being diagnosed, I have had to tweak my career path. Who knows if it’s better or worse than what I had previously planned? It’s just been modified to take MS into account. In a twisted way, MS has added a sense of purpose and drive to my life, which, truth be told, was meandering quite merrily towards an unknown destination. Essentially, MS has given me a massive boot right where I needed it. MS made me reconsider my life from every single angle, and how many people get that chance whilst still relatively young?

Or is it just too easy to blame MS for everything? ‘It’s not me, it’s my MS.’ It’s a cast-iron excuse, something to fall back on when the going gets tough. I hold my hands up. There were many, many times when I wailed ‘my life is over, s’over, s’not fair.’ For almost two years I convinced myself I had no future, nothing worthwhile to contribute to society. I’m not saying MS is a blessing. Far from it. But if we have to live with it, we have to make it work for us.

So, if we look at the question again, we could ask ourselves, ‘What would you have done if you didn’t have MS, and why aren’t you doing it?’

Tagged , , ,
Jul 18 2013
16 Comments
Emotions

Scaredy Cat

scaredy catA couple of days after my last A level, I boarded a train with £90 in my pocket and a one-way ticket to Vienna. With my Doc Martin boots and schoolgirl German, I was ready to take on the world.

Four years later, I went home, courage (or naivety) having taken me to several continents and back, with enough adventures to last a lifetime.

These days, I look back at that time with wonder. Who was that person and where is she now? The other day, someone said to me, ‘Oh, you’re so brave, the way you cope with MS.’ Am I?

Thinking about it, no, I’m not brave at all. I’m scared beyond belief. And what’s this ‘brave’ thing all about anyway? Why do people think it’s a compliment to tell someone with a life-long illness they’re brave?

What’s the alternative? One thing I do know, my courage has deserted me. I’m not brave. I’m just making the most of a terrible situation. MS has split my courage right down the middle. Yes, I stood up to bullying at work. Yes, I fought my way through the NHS. On the other hand though, MS symptoms have stripped me of my day to day courage.

I drive as little as possible. I walk as little as possible. I don’t go out in the sun. I sleep rather than socialise. Everything is planned right down to the last detail. In short, I am boring. Did I really drink Champagne on a train station roof in Poland for my 20th birthday? Did I really move to New York on a whim? What happened?

After I mentioned this to my mum, she kindly said, ‘you haven’t lost your courage, it’s just been re-directed.’ In a way, she is right. MS was a curve-ball that dismantled life as I knew it. Courage didn’t come in sweeping gestures, it came bit by bit as I slowly put my life back together. Tenacity drove me forward and got me through the long, lonely nights when I wept into my wine glass.

I’m working on changing from being boring back into a semblance of my former self. So if you see someone drinking Champagne on the roof of Cardiff Central in August, holding an ‘I’m 40!’ balloon, that’ll be me.

Tagged , , , ,
Jun 18 2013
14 Comments
Emotions

Fake It To Make It

fake it to make itYou know how we’ve been told for years to think positively? Well, the experts are now telling us we’ve been doing it all wrong. Yup, no amount of chanting ‘I am worthy’ in front of the mirror each morning will help boost our self-esteem.

And repeating ‘nothing tastes as good as skinny feels’ will not encourage me to relinquish my undying devotion to Häagen-Dazs.

Apparently, we need to fake it to make it, acting as if we already are what we aspire to be, so I should actively push away the ice cream as if I don’t like it.

I tried this last night, taking the enticing tub from the freezer, setting it on the table and then pushing it away, wagging a finger at it, saying ‘naughty ice cream, naughty’.

After I’d finished the whole tub (of course), I looked at the other tips and hints. If you’re feeling down, smile, you’ll feel instantly happier. If you make a fist, you feel more determined. If you strike a powerful pose, you’ll increase your self-esteem. Don’t do what I did though and try them all at the same time – you’ll look like a spaced-out bag-snatcher.

I don’t give up easily, so I gave it another go, concentrating first on the smiling exercise. Whenever I felt a little down, I smiled. And do you know what? I actually think it worked. It’s hard to think negatively when you’re beaming away. Although when I found a half-eaten, two week old sandwich in The Teenager’s bedroom, the smile was more like a grimace.

Moving on, how many of us slump and slouch? I know I do. So I pushed my shoulders back and stood tall, and yes, I felt better. Odd. Making a fist to feel more determined feels a little strange, but I see Andy Murray doing it all the time, so it must work.

There’s a lot to be said for faking positive emotions but I’m not sure if it will become a new habit for me just yet. It’ll have to join The List, along with drinking more water, picking up my kettlebell without keeling over and learning how to cook an artichoke. Meh. Smile!

Tagged , , ,
May 24 2013
10 Comments
Emotions

Transformation. Complete?

When your world is turned upside downTomorrow it will be exactly a year since I was unceremoniously ushered out of the MS Limboland waiting room and into a whole new world of clinically definite multiple sclerosis.

MS has had an impact upon every area of my life. Everything has been transformed and I’m not the same person I was last May, but for my MS anniversary, I am going to concentrate on the positive changes.

I’ve done my grieving, I’ve cried myself hoarse. I could either live out a sad, bitter life, railing against the injustice of it all or seize this opportunity to change my life for the better.

I’m full of gratitude for the support network I have – the family and friends who stuck by me through the dark times. The ones who made a swift exit? Probably for the best, eh? I’m indebted to all the healthcare staff who pulled me through and who continue to support me and I’ve made a whole new circle of brilliant friends.

Being bullied at work and subsequently sacked simply for having MS showed me that when I’m pushed into a corner, I can still come out fighting. Ironically, as my colleagues were trying to crush my spirit, the whole experience made me stronger, braver and has restored my self-esteem.

Probably the biggest transformation though, is within my own character. I’m no longer willing to live a life according to what is ‘normal’ or what is expected of me. I am choosing my own path. For far too long I have gone through life reacting to the whims and actions of other people, forgetting in all the chaos that in fact, I had a choice all along.

It took something far bigger than those people to turn my world upside down and to put into perspective just how fleeting and how beautiful life is. MS is here to stay, for now, and as long as it does, we have to learn to get along. It’s part of me, so I can’t hate it. I have to keep learning to adapt, take the good days with the bad. Is the transformation complete? You betcha. Phase One at least….

Tagged , , , , , , ,
← Older posts
Newer posts →