Nmo, spinal cord injury

The High’s

 

Obviously anyone reading this knows that the last few years have been a bit tough for Clint and I, the last 6 months especially. Spinal cord injury, at least in the beginning is about as demoralising as anything I can imagine. I am actually embarrassed at times that, as a nurse, even I didn’t realise the extent at which life is suddenly and catastrophically changed. It’s not just a matter of limbs not working, or not being able to walk. It is so incredibly more than that. It is pain and crippling fatigue and incontinence and infections and pressure sores and inaccessibility and it’s expensive and depressing and frustrating and lonely. It is having your loved ones checking your bum for pressure sores, it is bringing spare clothes with you in case you have “an accident,” it is endless visits to doctors and specialists, relying on someone to help you get around and all while struggling to hide the pain.

Amongst all the struggles, are the highs. All of a sudden, the so seemingly small achievements become astronomical. It’s like something chemically changes in the brain. You feed on the smallest of highs because they are what keep you going and it’s so exciting! It was learning to transfer unassisted, it was cooking a meal, it was a day without an accident or a trip to the shop independently to buy a coffee from the café.  It was a day with family filled with laughter. It was a productive day in the shed. It was buying a modified car, it is a glimpse of the independence that we know is not too far away and last week,  it was a session at the physio (yoga therapy) that left us both on the biggest high. It left us with the positivity and the reassurance that Clint will just continue to get stronger, while the hardships (hopefully) become less. And all of a sudden, the highs feel so high, that the lows feel more manageable.

At times it is a scary reminder of my possible future with NMO (or whatever). I sometimes look at Clint and wonder how we will possibly manage if we are both paralysed. And then other times, I admire Clint’s determination and positivity so much that it changes my mindset. If this becomes my reality too, we’ll get through it together. If he can get through all these things without totally losing his shit, and still manage to make us both laugh each and everyday, well then, I can manage too. Although… it is still my belief that I’m going to be ok and that I AM going to beat the odds.

Below  is a link, a collection of the “highs.” It makes us both cry, out of happiness and out of a belief that the best is yet to come 🙂

 

 

 

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4 thoughts on “The High’s

  1. Gem says:

    You guys are so bloody amazing! I know everyone tells you this but it couldnt be truer! What you guys have been through and the way you’ve tackled every step together is phenomenal and so inspiring and encouraging and to watch. Really love reading your blog Jess, thanks for sharing your journey with us. Lots of love xxx

    Liked by 1 person

  2. Peter & Sandy Bruyn says:

    You don’t know us, but we were with Russell & Lou on Route 66. Your journey over the last 6 months is incredible so much anguish – however the love that you 2 have for each other shines through!
    Things will definitely get better, particularly with the attitude you both have.

    Kind regards
    Peter & Sandy

    Liked by 1 person

  3. Phill says:

    Wow Jess that is so inspiring
    Certainly makes me stop and think how lucky I truly am.
    Thank you so much for your blogs, please keep them coming.
    You both are inspirational
    Phill

    Liked by 1 person

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