MS & Me

I don’t want to dive into a long list of criticisms of myself, my life and how I could have done things better. That would be the easy way to approach this article and god knows I traumatise myself with these thoughts regularly enough. Life is always easier when looked at with the benefit of hindsight. Rather, I would like to look at this through more forgiving eyes. Sure, I made mistakes and could have gone about things in a more positive, productive way but I say this with the benefit of lots of experience and from learning things the hard way. I did the best I could with limited knowledge at the time. 

So, let’s dive in - what have I learnt that could have helped if I had come to the realisations earlier. 

The first weekend in September is always a big one in our house. No back to school for us, but every year we pack up the car and head off to Electric Picnic. This year though, I messed up the organising, and between the jigs and the reels we couldn’t go.

This is the hardest blog post I have been asked to write for MS Ireland's MS and Me Community Blog. Emma Valentine

'I hope that you have an understanding of my illness, now that you are older. I know I get tired and forget things. I hope that you can see that it’s not me, it’s the Multiple Sclerosis' 

The innocence and compassion of childhood are qualities that I often wish we carried through to adulthood. If they had, I believe they would make us more empathetic and understanding human beings.

Emma Valentine shares what self care  living with Multiple Sclerosis  means to her, what settles her mind, calms her and that feeling of preparedness.

There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.

Last week (Part I) Rosie Farrell wrote about changing how we view and talk about disability to bring change & acceptance as part of someone’s life experience. This acceptance is part of creating personal, societal and systemic change so accessibility & equality become basic standards in Irish society. Read on for Part II: Why are you still blocking our way to equality

My disability is not a tragedy and I am not a burden. I am not to be pitied and most of all I am not an inspiration just because I live with MS.

My MS and disability is just one part of who I am. It is part of my identity, just like gender, sexuality, race or religion may be part of yours. Yet society rarely sees it that way. And for a very long time I did not see it that way either.

I have been diagnosed with Relapsing Remitting Multiple Sclerosis for 10 years now. That’s one MRI per year- plus the clinical trial related ones. Let’s say that I have been in a giant, buzzing magnet over 20 times.