Tuesday, 29 January 2013

It's a MSsy business

Yesterday I met my first real life MS person.
Thanks to the wonder of Twitter, I have made some online friends with MS. But until yesterday, I had not been brave enough to actually meet these people in person.
Instead I preferred to imagine what they looked like and pictured them in their homes with their lives going on around them. I gave them careers and families and even chose what cars they drove if they could drive.
Then out of the blue, I had a direct message on Twitter from one of my online friends. Would I like to meet for a drink with a couple of other people who had MS?
At first I was smothered in a feeling of being part of a new gang that wanted me to join and I replied yes please! But soon after that feeling started to change. And I began to wonder who these people really were. Would they be nice? Would they be 'normal'? Would they be a bit clique-y? Would they be a bunch of moaners who were going to drag me into an MS slump? Would they gang up on me?
And so the elation turned to dread and I quickly found something else to do that day.
But my MS friend didn't forget me as easily. And another invitation soon followed. This time a one-on-one.
By God this friend was persistent.
"Right," I thought, "I'll meet her for half an hour for a coffee. Job done."
And so arrangements were made.
But in the misery I have been loitering in recently, our coffee date was shoved into the recess of my mind and I forgot about it.
Until yesterday morning, about an hour before we were due to meet, when my treacherous mobile phone helpfully beeped a reminder while I was at the opticians.
I dabbled with the idea of standing her up. But my conscience stopped that notion in its tracks - after all she may well have made a real effort to meet me and I didn't know if she had mobility problems.
I was going to have to do it.
So I made my way to Starbucks (yes I know they are tax dodgers but everyone knows where the Starbucks is) and waited in the queue to place my order.
Helpfully the Starbucks team now have to ask customers' names when they place an order so I was listening intently hoping to hear my friend's name being given.
Nope. I didn't hear it.
After getting my coffee, I scanned the cafe. How do you find someone with MS?
I shamefully confess I was looking for someone with a visible disability. Someone with a stick, or a crutch, or a wheelchair.
But there wasn't anyone in the place who had any of those tools.
I sat down. And I text my friend. She replied "I'm coming in now" as I watched the door and spotted her.
The nervous knot in the pit of my tummy tightened as we greeted each other.
But you know what, it was ok. It was more than ok. It was good.
She was nice. She was friendly. She was normal. And I really liked her.
Our half hour coffee date went on for more than an hour.
We chatted about normal stuff. And about MS stuff. And about MS people we were both in contact with.
And then I confessed that my name Sian isn't the name I go by in real life, rather it is my middle name and my MS alter ego.
When I was in the MS closet I was Sian. But now I am out of the closet and people know I have it but I still like to pretend it is Sian who has MS and not me. (Yes I know I am a weirdo but it's an identity thing...)
She laughed. She thought it was funny.
We shared stories of how we were affected by MS, how we were coping with it, how it still screwed our heads up when we were least expecting it.
She well and truly popped my MS cherry - and I am glad she did it so gently.
Now I want to meet my MS online friends in person and I want to become part of the gang.
It's a funny old business this MS thing and sharing it with people who know what it is like too can only help turn it from messy to MSsy.

Tuesday, 22 January 2013

Confidence hangover

Sometimes things are set to try us.
Sometimes we overcome them. Other times no matter how hard we try, we can't.
And on the odd occasion, we won't even bother to attempt to get through it. We just let it happen.
I find myself being tried by something I don't even know how to get over.
My current crisis is: I have lost my confidence.
It hasn't been a sudden thing, it has been a long, slow creep. 
I doubt everything these days.
Questions on how and why something and everything is happening haunt me. 
And friendly teasing about my personality traits from those closest to me suddenly feels like merciless cruelty.
Doubt and loathing are now almost daily currency in how I view myself.
I find myself waiting for everyone and anyone who is close to me to also realise what I am. And to quickly rush upstairs, pack a holdall and run screaming from the house, without a backward glance. Never to return. Everything feels temporary now. Nothing seems permanent and it all feels so fragile - and breakable.
I've become self obsessed.
And this is a pretty embarrassing confession to make. 
We've all got friends or family members who literally cannot even contemplate that the world doesn't revolve around them and what they are doing.
We love them and we cosset them and we allow them to believe that they are the universe's centre, all done with a wry smile and a fond shake of the head.
But I now find myself in a position where I too have become self obsessed and am all consumed with me.
How ridiculous! What on earth has happened?
But try as I might, I cannot seem to get through this challenge to put me back where I was - confident, happy but a bit of a worrier.
The only thing I can muster these days is the worry. 
I smile occasionally, I even laugh sometimes. 
But the confidence has slipped.
It is currently lying on the floor in a heap. As if it has been out on a hard drinking session and has only just made it back home. Unable to make it up the stairs to bed, it just lay on the floor. Its coat is half off. Its skirt is tucked into its knickers. Its blouse has a red wine stain and something a bit suspect down the front. Its carefully straightened hair has got wet and dried frizzy and now sports a little bit of sick in it and its lipstick is smeared over its face. Its tights are ripped and one of its shoes is lost. The contents of its handbag are strewn around it. Its purse lingers on the back seat of the taxi which drove the long route home. And the house key remains in the lock on the outside of the door which is still half open despite the cold weather. It's going to take some time for the life to get back into Confidence and when it does, it is going to have a very bad headache.
So what can I do to help poor Confidence get back onto its feet? I can but offer it time and a bit of TLC and just wait until it is back on form.
And until it is ready, I just have to wait because I just don't know what else to do.

Monday, 7 January 2013

New year and new start

It's now the year 2013. And this year feels like a momentous year.

The reason? Well unbeknown to me, all of last year I was waiting. I was waiting for my second and final dose of the Big A. I didn't realise that I felt like I was carrying a weight. My life felt on hold until I had the treatment. And now I have had it. And I feel free.

Weirdly it feels a little scary to be free and not having the excuse of an upcoming treatment to blame my woes and my reluctance and my hesitancy on.

It feels a bit like I am leaving home for the first time with the MS nurse becoming my mother patting me on the head and saying: "Off you go child, make your way. You father (neurologist) and I have provided you with everything we can. Now it is your turn."

I admit I rebelled in the first few weeks after the second Big A. I became a petulant child and took delight in telling anyone and everyone how hard life was for me. Slamming the fridge door in a Kevin-the-teenager kind of way grunting: "It's so UNFAIR!"

Shocked family and friends who I have always shielded from the real truth of how I feel about having MS were gobsmacked at the venomous truth which I answered their well meaning questions on how I was feeling that day.

And then all of a sudden and with considerable relief, I felt calm again.
I disliked the rage and the frustration and the ball of fury which had taken over my being.
I'm now back to being me.

But the anxiety lingers about the future. I realise this is because I have focused only on getting the second dose of the Big A and haven't really thought further than that.
So new year and new start.

I've been given a chance at a relatively-free MS life so I need to grasp it and crack on. I've got to make the most of this thing.
And I am going to.