Handbag vodka and other things

I am ashamed at how long it has been since I last blogged. More so after my first 'group' meeting with some MSers last night.

I had persuaded myself that now I have admitted my MS status to myself and anyone else who wants to listen it was time to go public with the MS crowd.

And so it was that I ventured into town on a school night and was confronted by a gang of giggly, handbag-vodka swilling, funny and overall nice bunch of people in a Cuban-themed bar in the middle of Cardiff.

It was nice and strange all rolled into one. Nice because these people were friendly - each varying in degrees of gregariousness. They were welcoming and kind and just an all around nice gang.

But it was strange too because on the face of it, to a complete random person who knew no better, we were a gang of mates meeting up and loudly laughing (and laughing and laughing some more). It would have looked like there was nothing unique about us apart from being a bit tipsy (which in a couple of cases was spot on but in a couple of other cases was actually a balance issue) and we would have looked like we were all old friends instead of the reality of us being complete strangers to one another with not a great deal in common apart from fighting the MS monster which was flummoxing each and every one of us often in totally different ways.

It was humbling and interesting hearing snippets of how these people were coping with MS. Don't misunderstand me - this was not a night of soul baring about MS. Nor was it one full of 'woe is me'. It was a night meeting people with a shared interest but not one where our shared interest was dissected to within an inch of its life. Yes there was chat about MS and about treatments and everything connected but it was also a night of sharing nachos and avoiding getting photographed by the keen phone-camera snapper in the group!

In other news, I went back to work in February  It took longer than I had expected to get over round two of the Big A. For lots of reasons really including feeling the need to lick the emotional wounds MS dished out and generally not feeling physically ready to get back into full time work. But I'm back now and things are going well. My baby turned from a sweet smiling lovable little soul into a two year old with an independent streak and a determination (and a scream to go with it) to do things his own way.

My life seems normal at the moment. MS is keeping its ugly head down and so far the Big A appears to have thwarted any attempts by my monster to re-emerge.
I do get floored by fatigue by the end of the week (despite me changing from working shifts to a 9-5 day) and am often forced to spend my weekends on a big rest which is frustrating and guilt inducing but overall, things are going okay and I feel positive.
Life is good. Long may it continue.

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.