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.
What is the most frustrating issue for you?
Seeing Soula have to slow down as she was never the kind of person to be still. The WorkCover paperwork and appointments are quite stressful and a complete waste of time, it would be great for that issue to be resolved. It’s an added strain we both don’t need and it definitely adds to Soula’s pain.
Your outlook and plans for life have obviously been affected, how has that changed the way you plan your future?
Exactly that. We just have to plan more. The spontaneity has gone. We can’t just up and go as Soula’s pain is affected by everything that we do or plan. Spontaneity is something we both miss.
What do you believe serves PN recovery more; Brain plasticity or appropriate treatment?
Early diagnosis first which halts the mind getting into a sense of being in pain. It’s much harder to undo something that has had time to incubate itself in your mind. Of course, there are also the amazing practitioners and specialists that offer an immense support towards the healing process.
Getting back to the ‘Soula and Theo’ way of life was obviously one of the biggest goals for you both as is for most people, what was your role in getting you both back to it?
Understanding is the hardest thing. But once you believe it, it is a little easier to work with. Making sure that Soula excerpts as little physical energy as possible is key. If Soula can simply focus on menial tasks and her low bearing exercise routine and I manage the rest of the lifting, moving and all driving, we can get to live some of our life the way it was prior to the injury.
Give us a description of a typical day in your life, (please go in to the finer details!).
Well we’re trying to run our business again and live a ‘normal as possible’ life. I’m in the car a lot of the day, attending to all the physical duties, I do most of the house chores too. Stating the tasks I help with, such as making coffee, moving things around for Soula, helping in the studio, driving to appointments, day-to-day lifting, etc would seem petty for me, I used to do most of those things anyway, it’s not new. Perhaps there are a few extra things… if I can help and make a difference so that we reap pain-free time together, it’s worth it.
We prioritise our life. We put ourselves first. This may sound selfish, however, if we were to push through every event, dinner and function we are invited to, that would mean that ‘our’ time would be compromised. Compromise ‘our’ time and we compromise our relationship.
What would your advice be for other friends and family who have a beloved with PN?
Try to understand that the person living with PN has anywhere between 20-60% less capacity than you. If that person sits in a cafe for breakfast, its more than likely that they will need to rest before that outing and having a normal dinner. If dinner is long one night, the next day may be completely out. Understand that the person with PN needs to be selective in what they do and don’t judge them, for they would love to do more but can’t.
I’m a pretty luck gal hey? But in all seriousness, coping with PN requires incredible help, in fact 24/7 help if you’re going to make any progress and have any quality of life. Thanks Theo x
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