Tuesday, 30 August 2016

When the MRI scanner stresses me out

I’m diagnosed over seven years now, and in that time I’ve never had an MRI.
In recent discussions with my neurologist and MS nurse it was decided I should have one.
Firstly, I am still on Copaxone, which means injecting myself three times a week. It appears to be working because I am generally well, but the MRI will actually show if it is.
It will show all the lesions that exist inside my body, causing damage quietly, and thinking they can get away with it!
But this MRI will be compared again the last one in 2009 and the comparison will show exactly how my own immune system has been malfunctioning – and if the drugs I’m currently on are really working.
If they aren’t then I have the option of switching onto one of the many oral medications that now exist, as well as Lemtrada.
So it’s a catch 22 sort of scenario because I hate injecting and if the MRI shows Copaxone is doing me little good then I’ll get to stop them. But if I have to switch that means the lesions are doing more harm.
Anyway, it is what it is, and the results shouldn’t be too long hopefully.
But I have to say the MRI itself was fairly stressful. I was a touch laissez-faire about the whole thing; thought it would be a breeze, because I can’t remember it bothering me the last time.
And this time I was allowed to bring my own music to play while the crazy knocking sound did its thing.
But in reality here’s what happened.
I get taken into a small room, undress and put on the unflattering backless gown. Lock all my valuables in a small cupboard on the wall, and leave with only the key and my CD.
They ask me to lie down, tell me nothing about the procedure, stick on the headphones and strap me in.
I’m whoosed back into the chamber, with the emergency buzzer clamped in my hand and I find that there’s no noise in my headphones.
I feel it would be stupid of me to buzz and mention the lack of Josh Groban singing to me so I grin and bear it.
I close my eyes and try to doze off amidst the noise. My eyes never open.
Halfway through I start to panic as my throat feels dry and I am terrified of licking my lips, knowing that staying still is the name of the game.
My heart races and I talk myself down from the irrational feeling of helplessness.
I start to imagine the images the machine is making and the fact that they might not be good.
At times a whoosh of air comes at me, and at others the machine shakes so much I shake with it.
The noise knocks directly in my eardrum; my head starts to pound.  
And it takes forever. Way longer than the 20-30 minutes the letter suggested.
Finally I am taken out, and I mention to the nurse that I couldn’t hear a thing in my headphones.
She shrugs and says ‘Well, we enjoyed it back there.’
I gather my things, get dressed, and they give me back my un-listened-to CD and I go home.
It feels quite surreal.
So I take my eldest daughter to the cinema and feel no guilt whatsoever in eating Ben and Jerry’s ice cream and a bag of chocolates, even though I should be dieting (always!)

Now the wait for the results begins.

Thursday, 25 August 2016

Back writing ...

So much to tell, so little time.
But I’ll start at the top.
Daughter one started Primary Two this week, daughter two heads into nursery next week.
They both still feel like my babies but of course they’ve grown up when I forgot to watch!
Since Lucy was born in 2013 my writing and blogging has taken a back seat, and I miss it.
I’ll regularly formulate a blog post in my head and then it goes nowhere.
But Lucy is three now and the hard years are over – well, the sleepless nights are anyway.
So I’m back and seeing how this regular writing thing goes.
MS wise I’ve been generally well, although this week has been tough pain wise.
I’ve talked about this before but some MS doctors don’t believe pain is a MS ‘thing’.
Trust me, it is.
It disturbed my sleep last night and I’ve had no let up since I woke, despite the painkillers.
I’m getting on with it, because the girls still need fed, washed, dressed and taken to school while Joe is at work, but I wouldn’t wish the pain on anyone.
There’s other bits and pieces I’ll get to in the next post but for now I’m happy to be back posting and writing.
Keep with me. 

Sunday, 8 May 2016


This week I headed off to an AGM of a local branch of the MS Society, and while I was there as a member of the charity, I was also there in my new role as Vice-Chair of the charity's Northern Ireland Council.
It's a role I was voted into in January this year, having spent 2015 co-opted onto the Council to see if it was a volunteering role I wanted to explore further.
It was such an interesting year that I had no hesitation in putting myself forward for an official three year term.
That started in January, and as with most things I do, it hasn't been on half measures.
At face value the Council meets five times a year. It's a three hour meeting usually and as it's held in Belfast, it is a full day's 'work' for me.
On top of that there's support groups to attend, fundraising events to support and I've also appeared both in print press and on the radio promoting the charity's work.
But I don't begrudge the time, nor the effort.
The charity is one which I believe in wholeheartedly. They are the largest charity supporting people living with MS in the UK and the work they carry out is phenomenal. 
From information, support and advice, to fundraising and funding research, the remit they cover is wide and varied.
In addition, I personally find volunteering incredibly worthwhile.
Yes, it's time consuming and it can be tedious (there's a lot of report reading!) but it's something I do outside of my home and work life.
It's a time for me to recognise that despite MS, despite all that it has thrown at me, I am still challenging myself.
It has also given me the chance to meet some very inspirational people, some who have MS, and others who are just helping the charity because they want to.
That in itself is very humbling.
I'm looking forward to fulfilling my role in 2016, and in the years ahead too.
If you've never considered volunteering then I truly cannot recommend it enough.