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Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

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_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following:

  • I was not granted the wish of waking up from a dream where I tapped my heals and arrived back to my old pain free life,
  • I’ve come to the end of a sweet honeymoon period the anesthetic provided, and
  • my new treatment didn’t reboot my brain.

It’s very disheartening and I’m sure anyone without daily pain would find my three wishes absurd. It wouldn’t surprise me if they were thinking, ‘she’s quite a dreamer!’

Decision time

I had to make some choices; I want to be the best me that I can be, but which me do I want to be?

‘Soula-a’:
Has very low pain levels, does not work and has accepted the fact she’ll never return to work, maintains the light duties at home, manages driving a little (maybe once per week), socialises a few times per week, maintains a relatively normal relationship with Theo, and also with her family and friends and sees them often. ‘Soula-a’ maintains a walk twice a week, manages a little hula hoop, and practices yoga once per week. Toilet signals and functions are average. ‘Soula-a’ lives in her sanctuary in Collingwood among an established and much loved community. She doesn’t create much artwork.

‘Soula-b’:
Has medium pain levels, does not work and has accepted the fact she’ll never return to work, maintains most duties at home, does not drive but is a passenger a few times a week (she even gets away with Theo sometimes!). ‘Soula-b’ socialises a couple of times per week, pain impacts her relationships with Theo, family and friends. She has to choose between walking once per week or practicing yoga once per week if she also manages a little hula hoop. Toilet signals and function are affected. ‘Soula-b’ lives in her sanctuary in Collingwood among an established and much loved community. She doesn’t create much artwork.

‘Soula-c’:
Has low – medium pain levels, is self employed in a p/t position that is completely tailored around her pelvis (and reliant on Theo’s help all day). She no longer owns her sanctuary home, has moved away from her loved ones and her community of 17 years. ‘Soula-c’ lives 1hr/45mins away from Melbourne. Her duties at home are super light, she never drives and avoids being a passenger in the car more than once per week. She mostly socialises locally within walking distance and her relationship with Theo is very affected. ‘Soula-c’ hardly gets to see her friends and family as commuting is too difficult. Toilet signals and functions are affected. She doesn’t create much artwork and her life with Theo must begin all over again – a most unsettling situation for someone with a chronic health issue.

It’s like splitting hairs isn’t it?

The hairs decide whether I live or exist.

Responsibility and acceptance

The above Soulas, include portions of who I was. Putting the portions together still falls short of describing the person I used to be.

Back to the hairs. Back to the me choice and how I can be the person I want to be.

I decided on Soula-c. In fact Theo and I were kind of forced to decide, sacrificing our life as we knew it well before the sweet anasthetic put me to sleep for my treatment. I mostly blame the lack of financial support from the organisation that took a premium from me (claiming they’d help me in the event I had a work accident), WorkSafe Victoria.

Frida Kahlo was known to have said; There have been two great accidents in my life. One was the trolley, and the other was Diego. Diego was by far the worst.”

I can relate. By far my worst accident in life was not my workplace accident, but rather my personal experience with WorkSafe Victoria.

Breathe…

My first hours of work were just three weeks post op. Needless to say, I had a little crash a couple of months ago.

To recover from the crash, it took four weeks of staying local, sleeping alot, moving around like a butterfly with just two visits to the nearest town in that whole time so I could come back to my ‘Soula-c’ self. Let me  clarify – that’s me, bound to my new small town, consecutively for four weeks.

No one could tell. No one can ever tell – if I think they’ll tell, I stay indoors.

‘Soula-c’ wouldn’t be everyone’s me choice but it’s mine, ours and now, my minimal efforts go toward making a living, and not entertaining chronic pain all day.

Let me point out here – the stim made the difference, the stim gave me a choice.

To Summarise

Fact No 1 is that Theo and I can achieve more being together all day than if we’re apart. And if you add these facts:

  1. I want to work
  2. Theo and I want to work together, (based on previous business experience and success)
  3. We need to make a living and think about our future (including future treatment costs)
  4. We both need to be part of a community and be contributing in a creative way

I miss my family and friends every day. I crave to spend days in the studio without help and create a body of work. I want to go to the National Gallery, meet a life-long friend for a chat, go to a movie, go for a drive, get away for a few days with Theo, be spontaneous…

Reality is, I have a chronic health issue and we have to manage it. We have to manage me so we can be. We are doing our best.

QG&WMedia

 

Feedback

6
  • Lisa

    Hi, I’m so happy for those the ‘stimulators’ help, I truly am. I have had two implants of different models in the past eight years. My ‘honeymoon period’ with both was promising . I tried my hardest to make them ‘right’ for me. I have a wonderful Pain support team of Proffessionals, who, I know will never give up on trying to find knowledge of anything new in the area of Chronic Pain Management . I’m lucky to have them.
    As we all suffer in varying ways, the nervous system being so finite, management is a very tricky business.
    As I read more of Soula’s Posts and the comments/ experiences of others, I lay here and can’t help the tears that flow.
    There is such HOPE & DETERMINATION, among everyone. It is inspiring. Life has to go on. We try so hard for ourselves and loved ones. I know from personal experience, the look on faces of desperate hope that the ‘latest thing I try, will be IT!’ God, knows I have wanted every thing to to be my ‘answer’…. The failures are soul destroying … But I keep going, trying new plans etc.
    In January this year, I had Stemcell treatment. This changed my life. It did reboot my nervous system! After approx one month, I began to slowly notice differences. The main being, deep ‘TRUE’ sleep! As you all know, sleep is elusive to us. I had not experience deep sleep where I would wake, even if it was by Pain four hours later, where I actually felt I had SLEPT! I felt rested !!! It was amazing. This in ist self allowed my Brain a rest from the constant pain messages, my nervous system had rested! My heart had rested! I felt so different within myself! I still had Pain, but as time moved forward, I found I was ‘managing my Pain’, much better as I was ‘rested’ enough to cope better!!!
    It has been six months now and I am managing my Pain on a Whole New Level. This has been a MIRICLE FOR ME!
    Sadly, after coming off strong Neuro Meds, no longer sedating me, also cutting back on pain meds, my new found pain management and clarity of mind, also gave me my true reality of my life…
    Huge changes have occurred as a result.
    My marriage has broken, this broke me. So here I am with the best pain management I have ever had and now find myself alone after a lifetime of loving my Husband, father to my children, who I truly believed I would grow old with… IRONIC! Just when I seem to be the ‘best’ I’m ever going to be!
    We had recently downsized our home, moved etc… Now I will be navigating a future with Chronic Pain alone, moving to living alone etc….
    I remember when I was first diagnosed and informed that my life of Chronic Pain was permanent, my PM specialist encouraged me to seek support in regular council to learn how to live with Chronic Pain, I’m so glad I followed his advice. I have a long established relationship with this Councillor… Whom without, I don’t know where I would be today!

    I encourage everyone to establish an independent support council outside family and friends, qualified in Pain council …
    The COST OF CHRONIC PAIN, the impact after many years, the isolation, no matter how hard I tried, ‘flares’ would have me cancelling much wanted social contact etc … I could go on, but enough now.
    Bottom line, I now have to start again, alone on this journey. I give thanks for the Stemcell treatment, without what it has availed me to accomplish within myself I don’t know what I would have done.
    I have support. I have grown Children. But my heart is broken. That is a pain I never expected…
    This next Chapter of my life is not as I thought it to be…. So it’s time now for planning the ‘Chapter’, that will be my last. I pray the Stemcell allows me the rest I so desperately need to cope with this insidious chronic pain. I’m determined to get some kind of life despite my broken dreams.
    I pray that by sharing here, where you all live as I , daily navigating around Chronic Pain I will continue to be inspired by your strength.
    Bless you all, WARRIORS OF CHRONIC PAIN, I admire each and every one of you. We all have our ‘stories’ to live. With this site, we are less alone.
    THANKYOU Soula.
    Sincerely Lisa

  • Lorettaholscher@gmail.com

    Dear Soula,
    Like you, I fell on my butt. For me, it was light snow cover on icy concrete. Winter was around the corner and I was at a friend’s home having fun playing mindless bunko. I noticed the rain outside the window, but never put two and two together. Rain freezes and snow falls covering ice. Basic Minnesota, USA logic. On my way to the car, my feet hardly touched the ground. My thought was, thankfully pondering falling on my rear, I could have broken a bone! That was the end of 2011.

    So here I am 5 years later after traveling to my 5th different state, Georgia, this Thursday for a Cryoablation procedure with Dr Prologo. Hope springs eternal…
    I will let you know how I am after the procedure.
    Yours truly in pain,
    Loretta

    • soula

      Oh Dear Loretta!!
      We are not meant to assume we might have an accident… as humans we have best thoughts in mind, not worst! But life changes after an accident.
      I have not heard about Cryoablation so I will wait to hear from you. My very best wishes for a successful treatment. yes, hope springs eternal!
      Warmest wishes xx

  • Sue Carey

    Dearest Soula,
    Beautifully written as always, and honestly explains the choices that chronic pain sufferers have to make every day.
    Our pain and treatment paths have followed a remarkably similar path.
    We both uprooted from our safe haven, moved to a new area in the hope of a better quality of life, as a family, and pain sufferers.
    I have not really settled in our new home, though my view of the sea is beautiful.
    I never venture out alone, I do not know the pot holes in this little historic town yet.
    I am fearful of a fall, physically and emotionally.
    In January I underwent a trial for a sacro neuromodulation implant. I had 3 days of blissful relief, and actually danced!
    The last few months have been spent preparing for a permanent implant. April was spent travelling 3 hours on the train to London, every Wednesday, sitting through a socio/bio/psycho course for 5 hours, returning home at 11pm. It took the intervening week for me to recover, and go up again.
    Next Monday I go in for my Medtronic implant, I believe it has 2 leads, but not as many electrodes as you have. I am anxious, terrified actually.
    This is the decision that Mark and my family want for me, as they believe I will be better, fixed, pain free again.
    I am afraid that the battery implant area will cause more pain, than relief I will experience.
    My father is extremely ill, and has been diagnosed with a life threatening illness.
    If I undergo the implant surgery, I will need a 6 week recovery period; I want to be able to care for him.

    Choices, so many choices for ourselves and others expectations of us.
    No one remembers the Sue that was without pain; 1994 was far too long ago.
    I glimpsed her during the implant trial.
    Will I meet her again after the permanent implant; or will the intrusion of the hardware prevent her reappearance?

    • Sue Carey

      Sorry Soula,
      I pressed “send” before signing off properly…
      I think of you often my dear friend, and have wanted to reach out to ask how you and Theo are setting in.
      I wanted to tell you about my implant.
      But losing Mum, and then my Dad getting so I’ll has dominated my thoughts.
      We, too lost our furry family member, so shockingly suddenly ~ I feel so alone without her.
      Much love to you both, and continued best wishes for your gallery, and for you on your daily journey with this pernicious condition.
      Gentle hugs from Sue xx xx

      • soula

        Dear Sue,
        I’m SO SO hopeful for you. Post op period is kind of easier in a way, you understand the process and the pain makes sense unlike the erratic neuro pain that comes and goes as it feels. Knowing it will pass is important too. The stim has given me quality of life, not the old Soula but certainly one who can have a life. With a chronic illness, we have to do our best. I’m so grateful for the stimulation devices. We are lucky to live in this time.
        The battery area heals and becomes robust. You’ll be surprised. That’s the easy bit! It is a big change though, and it takes time to get to know each other. Don’t lose hope if you get bumpy at times. I’ll be here anyway…
        I’m so hopeful for you… excited even.
        Sending love xxxxx

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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 aggrevated 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.

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