Wednesday, 13 September 2017

Happy 3rd MS birthday week to me

Thanks to the powers of Facebook this week my memories have reminded me that 3 years ago today I was admitted to hospital for an emergency CT Scan, lumbar puncture and MRI.

The pain in my head was excruciating, I couldn't bear light and the world had pretty much faded to black and white. The hospital thought I was having / had a brain haemorrhage.

A short time later they were talking about 'shadows' in my brain, it could be haemorrhages, it could be the aftermath of a number of strokes, it could be tumours or it could be lesions as a result of Multiple Sclerosis - randomly Door number 4 was the one I was hoping it would be......

The others could all be fatal - MS would be shitty, but it wouldn't kill me, so please let it be Door 4.

3 years on the MS Bus and it's changed my life in so many ways and in a positive way I think mostly.


  • I'm a 'kinder' person than I was before I think - maybe.
  • I've kept record going and I'm not letting up, I think other than being Gareth's wife that's the longest I've 'applied myself fully' 
  • I've met so many people with MS, talked to them, 'de-medicalised' some of the information about Lemtrada 
  • I live for the now, I don't put off anything until tomorrow or another time losing my brother taught me the hard way that sometimes tomorrow doesn't come
  • I and less tolerant of  people who suck the life out of the world, negativity deliberate weakness or laziness or the endless pursuit of 'More'
  • I'm incredibly bitter that my family are all gone and I want to scream when people complain about the parents or siblings and the things they might say or do, I'd give everything I have for just 1 minute of them saying or doing the wrong thing, something, anything or nothing at all just to be there and not gone
  • I pay attention to what my body tells me these days, I don't just ignore things and hope they'll go away. I google and try to self diagnose, but I don't ignore things any more and hope that they'll just get better
  • I spend more time helping and doing things for others, something the old me never seemed to have the time for, now I make time.
Diagnosis can result in such emotional upheaval, anxiety and depression. It can be a terrifying transitional point in your life. For me being diagnosed seems to have resulted in reminding me of the strength of purpose and determination that my Dad and then my Mum faced their diagnosis. The fight they both put up and how proud it made me of them both. I won't let them down this has made me stronger, have more confidence in myself. A little more human than I was before. It's given me fight, or something to fight against. It probably doesn't hurt that my monstrous ego refuses to accept that anything other than victory against this nonsense is possible.

I think that I'm going to put a bottle of something fizzy in the fridge for us tonight to go with the home made mushroom risotto for dinner. 

I'm going to celebrate how far I have come, what I've achieved - getting my sight and walking back, keeping my positivity. I'm going celebrate 3 years of being in charge of my immune system and keeping the MonSter in a box. So happy 3rd year of no progress MS - fuck you very much 😈😈😈

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