CES Down Under

I was diagnosed with Cauda Equina Syndrome in August 2012, when I had a degenerative bulging disc crush the nerves in my l4/l5. I was playing touch football with my father at the time when I felt a twinge in my back.

Over the next three days going back and forth, I was eventually sent to Emergency after a CT scan showed that I was in big trouble. The pain was excruciating.

After 13 hours in emergency I was given some home truths about what was happening/going to happen to me . I was given a MRI which led to surgery where they cut out my bulging disc.

I spent 7 weeks in hospital, 3 ½ weeks in trauma and 3 ½ weeks in the spinal injuries unit.

I am now living with numbness to the bottom of my feet, back of legs and saddle area, lower motor neuron bowel, flaccid bladder, sphincter and sexual dysfunction.

Life had been great at the time this happened. My son had returned to my city (he had been living 16.5 hrs drive away in a different state) I had been dating his mother for a short time previous to this and workwise I was secure and cemented in my career as a service manager in an industry that I had been in for 11 years to get to where I was.

I felt secure and held no fears.

I was 33, strong, fit and had a great work ethic. I had hoped to further relations between my partner and I, possibly have a new brother or sister for my son (now aged 7). I felt as though things had finally started moving towards a positive life, as has previously just been through a few tough years.
I had dealt with the depression of not having access to my son. I had been a little wreckless in my lifestyle and had attempted to put my mind into another place. But, as I said before, I now felt that finally my life was moving in the right direction.

Now my life revolves pretty much around my condition. I cannot return to my former work until I can perform my former duties. (this may be never). I wake in the middle of the night and in the morning to catheterize, manually evacuate the bowels (which is never regular) and try to do as many things as possible that are positive – physically and mentally…

I am very frustrated. I have always worked and always considered that if I ever lost my job that my strength and determination would lead me into another decent job no problem! That has changed.

I no longer have fitness, strength or the confidence that I once had.

I fear having accidents in public places, I fear tripping and falling over, I fear people seeing the sadness under the false front I wear.

It makes me feel guilty that my son misses out on things with me. He asked his mother the other week ‘Do you think Daddy will ever be good again? Will we be able to do fun stuff again?’ I was totally devastated.

My sexual dysfunction continually frustrates me.

I have not been able to ejaculate since my initial injury. I have the occasional half strength erection, but apart from that its floppy and completely numb. The sex thing is really hard. I just wish I could feel it and get an erection and ejaculate like I used to… thinking about it now… is crap…. The head doesn’t change, it’s just the other parts not coming to the party!

CES – the cure for masturbation! LOL!

I don’t feel sexy anymore, I don’t feel like a sexual being. I used to be a ‘once a day kinda guy’ and I haven’t had it this year yet. I can get half erections and Viagra works, but its side effects aren’t great and it costs a lot. I feel more like my condition has consumed me.

I have dealt with the dark days in different ways, depending where I was at the time.

At the hospital I had some amazing support from the staff, it was such a scary adjustment to take on, but after I realised I was stuck with it and that I would have to toughen up.

Us males don’t like to ask for help. This condition is not very well known where I live, the nurses in the trauma ward hadn’t heard of it until they had started working in the hospital after studies. I have had to lean on family, close friends and my partner. I’m sure sometimes that I frustrate the hell out of them but I couldn’t do without them. I feel lucky to have their love and support.

When I was at the spinal injuries unit they connected me with some groups. TRP, who are a group made up of a nurse, social worker, physio and occupational therapist would come and visit me on a weekly basis to assist with my return to the home environment for the first 4 – 6 weeks.

SPOT, who are much the same also supported me and this continued after the initial six weeks. I can contact them at any time for troubleshooting on any problems I have – forever. It is good to know I have this support.

‘Employment options’, negotiate my return to work or rather try to find me work suitable to my condition.

I am currently 7 months into my condition, it’s been a hell of a fight to this point and I’m sure it’s going to be another big fight to survive the rest of it! I use the saying ‘it is what it is ‘ and I accept that negative thinking isn’t going to change anything. Positive thoughts are my only option.

And finally if not least … my financial struggles have been terrible without work. My sickness benefits keep me below the poverty line $498.00 aus per fortnight just doesn’t cut it unfortunately.

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