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.
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!’
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?
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.
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.
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.
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.
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:
- I want to work
- Theo and I want to work together, (based on previous business experience and success)
- We need to make a living and think about our future (including future treatment costs)
- 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.