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Permission granted and now it’s back to reality!

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Boxing Day Self Portrait For Theo

Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off!

Sensing the cynical? I best write this post two ways. Technically, the permission ends on Thursday night when we head back to Melbourne so I’m going to post my brain’s two conflicting versions:

1. Crap thinking out-of-the-way first version

Pulling yourself out of life isn’t easy and especially if you’re forced to do it. I was forced and that force keeps on damn well forcing. It brought Theo and I to Tasmania for a four-month ‘sabbatical’ with the topic of research being chronic pain and how to live with it. Truth is, the topic has more likely been what the hell do we do now? It was also meant to somehow help me rid some more pain and pace up my driving, exercise and some daily chores. I was unsuccessful. Continue Reading

Theo, and his ‘carer’s’ perspective

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Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. Continue Reading

Reality posts on my Chronic Pelvic Pain Story Facebook page

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Recoup Off To The ParkI thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.

Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of  ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.

To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page. Continue Reading

Back to life

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Soula's Business Card Origin of Image

Soula's Business Card Origin of Image

Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen.  As if there’d be ANY words for me to explain how I feel writing this post. So please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:

“I’M BACK AT WORK!!!!!!!”

No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!

And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).

It’s been 2,063 days since my ball went burst…

…or

5 years, 7 months, 23 days (including today)

…or

178,243,200 seconds

…or

2,970,720 minutes

…or

49,512 hours

…or

294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).

I feel like… like… ME! And there isn’t a greater feeling. Continue Reading

Awwwards Honorable Mention

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Oh happy day! Yes this website has been nominated for an Awwwards ‘Site of the Day’ with an Honorable Mention.

Please help me say, ‘thank you’ to the wonderful team at Origin of Image who helped me put this pelvic pain resource together and in turn gain more awareness for Pudendal Neuralgia.

All you need to do is visit this awwardswebsite link, log in with your Facebook or Twitter account (or register) and rate us from 1-10.

To date, pudendalnerve.com.au has had almost 10,000 visitors. It certainly isn’t anything to be happy about, that’s alot of people in pain, but if that’s an indication the website is indeed becoming a resource, creating awareness and helping with the frustration of chronic pain, which in turn gives great relief and direction, then I’ll be very happy. My chronic pain at least served a purpose.

Thank you Origin of Image.

Please vote now… awwwardswebsite. Continue Reading

Donate

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No donations necessary but if you are a health org and would like to support the cause I would certainly appreciate the contact. Everyone else just blab your head off if the site has been a help to you. If you can provide more information and new resources then please use the contact form and let me know. Quickly!

I can’t say it’s been a pleasure to produce this site but hopefully creating an Australian resource and awareness for other sufferers of pelvic chronic pain, and also for injured workers who are not getting any support (and hopefully escaping trouble!!), has certainly been satisfying. I know now that if I had the understanding for my issue after my accident, alot of painful time, financial upheaval, life disruption, frustration and possible permanent damage would have been avoided. But if I’ve managed to even make you laugh or give you a place you can visit very easily, when you want to have a yaaaaaaaarn or a whiiiiiiinge then the project has definitely been worth it! I hope I’ve managed that much.

I must thank my gorgeous and extremely supportive husband Theo too, for… well… um everything actually! He does it all, yep, all of it and 24/7…  good job hey? Like it? Email him or visit Origin of Image.

thank you
xx

 

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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