The Hidden Issues I Face Being An SCI Walker. By Brenda van Eyk
If you didn't know me and you passed me on the street, you probably wouldn't suspect that I have an SCI injury especially if I'm having a good day and not using any aids.
I had a small fall on the 31st of October 2019 and after being misdiagnosed multiple times over the next few weeks it was finally discovered that I'd broken my back. A tricky surgery, a stay in ICU and nearly 4 months in hospital later I discharged early from the Burwood Spinal Unit before we entered Covid-19 lockdown.
It took me about 12 months after discharge to get to the stage I'm at now to be able to practically be a fulltime walker (apart from long distances for which I have a wheelchair).
I'm a T7 ASIA D Paraplegic and even though I'm able to walk, I have many hidden issues that I deal with on a daily basis. These are:
This has meant I'm not able to go back to my pre-injury fulltime job plus it stops me going out and doing all the social things I want to do. I have to plan my hours, days and weeks so that I get plenty of rest, but I'm still always tired.
Even though my injury level is T7, I do suffer from some mild AD. It's usually associated with bladder or bowel issues or nerve pain.
BLADDER & BOWELS
I regained full function of my bladder and bowels but I suffer from capacity issues, spasms, not being able to tell whether it's my bladder or bowels that need to go and I need to watch what I eat and drink as that can have major effects on both systems.
SENSATION & PAIN
My sensation is severely altered from my chest down and I have constant 'banding' pain around my abdomen. I also suffer from nerve pain at my injury level if I do something that my body doesn't agree with.
Some days can be really challenging mentally, not just because of the injury and the related fatigue but everything surrounding it as well.
Eg. housing modifications, return to work trials etc.
The above all sounds terribly negative and that's not what it's all about. It's to educate people that yes, we SCI walkers are 'blessed', 'lucky', 'have worked hard' to get to where we are but it's still a rocky road we travel.
I hope my story helps with raising funds for the NZST, educates people and let's those of you that are SCI Walkers know that there are others out there that understand and live your struggles each day too.
Boy. Just as she did last year, Brenda’s writing has certainly laid it all on the line – she tells it exactly like it is.
For those who sustain a spinal cord impairment through illness or injury, rehabilitation and recovery is often made more difficult by the sometimes uncertain funding available. At NZST only 20% of our annual income comes through government sources – that leaves a million dollar hole that needs to be fundraised.
You now have an opportunity to help others like Brenda to get the support they need to embrace a positive future.
We are not part of any DHB or ACC.
We are not a government funded organisation.
We are a charity that relies on the generosity of our community to deliver world class peer support and vocational rehab services, community advocacy and provide a comprehensive collection of resources for anyone with an SCI – whether in a chair, using mobility aids or walking freely, their whānau, carers and therapists.
When you donate you join NZST’s team and support positive futures.
Please will you back my team by donating today?
Donate directly to our bank account: NZ Spinal Trust, Westpac Parklands, 03 - 1597 - 0101190 - 00 (Use your name and 'AA2021' as reference)
OR CLICK HERE to donate using your credit or debit card.
Double the impact – Double the awesome 😎
Best of all, if you give to this appeal your gift will be doubled by the generous team at Access Community Health – they believe in our ability to deliver (they’ve seen it in action through partnering our Whanau Peer Support service) and they're prepared to match every single dollar donated before September 25th. So, your $25 donation means $50 to NZST, $100 becomes $200, $500 becomes $1,000 … you get the idea.
Access Community Health will match up to $15,000!