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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.

If you want to insist and bring some positivity into this part of the post and call it a Christmas present, I pulled out all stops for the 25th December in order to drive 10 mins to the nearest town (and back) and visit the supermarket. I wanted to cry at how unfamiliar the car was to me. I grew up a mechanic’s daughter, standing up on a bumper to share Dad’s stare at the motor and changing gears at the age of 10 from the passenger seat while Dad drove. I learnt how to get myself back on the road if I broke down (truth be told, I saved my mother twice!) and it’s fact I used my art school masking tape once to patch up my radiator hose so I could get to uni and back home (a 40km round trip… yes with tape!).

Now do you want to read about the supermarket and how unfamiliar that was too? I’m like a kid in a candy shop… it’s sad.

Tasmania is beautiful… small… but still too big for someone with chronic pain. In four months of being here I managed just 11 trips all micro managed minute by minute. Mostly painful, just a few magical moments. We didn’t even see half of this beautiful island.

Let’s be honest, I would not be here without Theo. I’d be living in a caravan because that would be all I could manage, I’d never see another place!

2. Enough with the sulking, be grateful 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, pace up my driving, exercise and some daily chores. I may not have succeeded in pacing those activities but I have remained medication (and hallucination) free and have survived without my bi monthly treatments of remedial massage and acupuncture. That’s huge!

Boxing Day Self Portrait. For Theo.

Boxing Day Self Portrait. For Theo. Pencil on wood panel. 10 x 13cm.

I granted myself a mammoth Christmas present and drove 10 mins to and from the nearest town to visit the supermarket. I wanted to cry from exhilaration feeling my hands on that wheel and that independence, even for such a short time. Holding the car key (or rather car ‘thing’ as keys are sadly being phased out), I walked around the supermarket and acted like I could pick up anything and just take it to the counter. No one could tell Theo was carrying things because I couldn’t, I went with it! I drove to the supermarket and I was shopping… and I was going to get back in the car and drive home too.

Tasmania is beautiful… small… and although that’s still big for someone with chronic pain, in four months of being here I managed 11 incredible trips by micro managing minute by minute with Theo. We’re great at that now! My magical moments providing restoration and strength for the pain that followed. We didn’t even see half of this beautiful island but what we saw was just breathtaking. It’s in my heart and I will carry it with me forever.

Let’s be honest, I would not be here without Theo. With his immense support and help I was able to put a body of work together during this self evaluating time and I will mark the occasion (which coincides on my eight year anniversary with chronic pain) with a solo exhibition in March at Penny Contemporary gallery in Hobart.

There!

Expressing your angst is such catharsis (I love that word). I consider myself lucky to be able to do that in words and pictures. I also consider myself lucky to not only be coping with this never-ending nightmare, but that I can also remain grateful especially for Theo and my creativity.

I gave Theo this portrait on Boxing Day… chronic pain won’t kill our life, our life is still wonderful. And as for what the hell do we do now? I’ll let you know as soon as we figure it out!

Feedback

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  • Lisa

    Souls, I came upon an article about your journey some time ago. Tonight I found your web site via another Chronic Pain support issue I was searching. I’m so glad I did.
    Today I needed to find a fellow Warrior. A brave Soul still facing CP one day at a time with such heroism and dignity. Theo is a remarkable Man. I’m also fortunate to have a remarkable Man by my side.
    I’m entering my eleventh year of CP. A journey very similar to yours, apart from Pudental nerve pain originating from failed Spine surgery. I also have a Nevro implant, previously a Boston scientific implant…
    I feel like I have exhausted all avenues for relief, even travelling overseas investigating stem cell treatment.

    Like yourself, I pace my existence,. I am so happy you have your Art to express yourself, such a gift and out let. Funnily, my Pain management Dr resides where yours does, they are a great team. Truely compassionate professionals. I thank God I found him of did the opposite happen? Either way, it was just in time, I was at my wits end.
    It is one day at a time, like you said, just like the weather, frustrating, but we learn to live with it. I allow myself the despair from the torture and break down when it gets too much. I am Human and being tortured at any level constantly will cause “one” to break, it’s normal brain response. Then I’m good again after a cry, a big sleep….I start my journey again for as long as I can even while pacing.

    Thank you for being a voice for CP …. Where I live there are no support groups.
    You are doing well. Tonight, I lay here with ice pack circle under my but! Rubber mat under that, dignity still intact! I hate my CP, but I love me.
    New Day will dawn tomorrow, Bless you, Lisa 😉

    • Soula

      Dear Lisa, it’s heartbreaking to read your comment. I can read you’ve lived with CP for a long time, there is so much acceptance in your words, so much reality too. I’m so glad to read that there is self love. You give yourself the permission to be a human in pain, that is so difficult to do and yet such a huge part of our coping. ‘But I love me’ will be what I carry from this beautiful comment. I’m putting that in my heart right now! Thank you so much for taking the time to share your story and leave some strength here for all of us.
      Yes, tomorrow’s going to be a better day…
      Bless you too xxxxxxxxxx

  • Arlene Jones

    Soula, you are an amazing woman! As is Mickey! I look up to both of you. I don’t know where my life’s journey is going either. Surgery of no surgery? What if I am worse for either decision? That is the big question.These thoughts go back and forth in my mind constantly. Fortunately, I have my friends in my support groups to help me keep my sanity! And people like you who help me be strong. Keep up the good work, and thank you. Also, a big hug for Theo! God bless you both!

  • Mickey Nilsen

    Soula, dear – oh, your honesty makes me feel sane. Like this world I live in filled with chronic pain is not my imagination. It’s the shitty reality of pudendal nerve entrapments and a busted up back. I’m about 6 weeks away from decompression surgery and scared to pieces. I know staying like I am now is such a downhill slide, it’s becoming a mudslide, so I am attempting the surgery to try to mend the nerve if any such unhitching/unsticking can be done. Tracy Sher thinks my nerve was sutured to the pelvic floor, so he may find it there and excised it out. Who knows what he will find. I know the recovery is even more challenging than life is today, and do I feel ready for that? NO! But I cannot keep pushing through, so I will try this last surgery and then settle in knowing I’ve done everything I can to try to fix these nerves, and find a healing pace of life. Alone. I don’t like that part. I’m so thankful you have Theo. I plan to write a lot, hopefully a guidebook, life book, help book for those living this alone. I’m learning how to accept a LOT of help at age 54. I miss being married. I miss my children – one who now lives out of state, and the other who lives out of the country. It appears I am supposed to draw even closer to my LORD and learn more humbleness ahead. Wish me luck, sweetheart. Keep writing. I love that you say it like it is. You are the real deal, girlfriend. And I surely do love you for that. Hold Theo’s hand, and keep living the life, one day at a time. Your fellow survivor and warrior – Mickey Nilsen

    • soula

      Mickey you are so gorgeous. I just stopped when I came to this part of your comment, ‘I’m so thankful you have Theo’. That was so beautiful I read it aloud to Theo!!! He beamed!
      Wow, surgery! Good luck, stay positive, Tracy is an incredible physio. I hope when the surgeon gets in there it ends up being a simple procedure. Please write and let me know how you go, I’ll be waiting to hear.
      You’re so so sweet, thank you for your words and neverending support. xxxxxx

  • Rosemary McKenzie-Ferguson

    I can tell you what you do with it, because it is the same advice I give to everyone, you take the beauty of your life and turn it into butter and you spread it wherever and whenever you need to. I have danced with the pain that inhabits my body for over 20yrs now, oddly enough I give thanks to it because I would not have ever come to know what I do in regard to the workers compensation industry if I had never been injured, nor would I have met some of the most beautiful people in my life had I not been injured in the workplace.

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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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