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Adventures of a stim controller

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Ever wondered what a stim’s controller’s day looks like?

Firstly, let me clarify that I’m talking about my Boston Scientific Sacral Stimulation Implant controller (BSSSIC), not my St. Jude’s Peripheral Stimulation Implant controller (SJPSIC otherwise known as, the one that saved my life).

I’m experimenting at this 7 month post implant stage in order to figure out whether I need the SJPSIC by not using it at all. Two devices in one backside cheek is quite tricky at times. Someone without a chronic health issue would probably complain endlessly as this situation does have a few uncomfortable limitations. For someone with a chronic health issue though, that side of things, is a piece of cake in comparison – almost welcoming when you think of the benefits that come with it.

And one more thing, before I go on – no! I won’t turn both on for your entertainment purposes.

A controller has a fair job to do – it’s committed 24/7. You could argue it deserves a name but I haven’t got passed ‘controller’ yet. Give me time.

As I write this post, controller is being charged. That’s different to the charging that needs to be done for the internal unit. It doesn’t take long, I don’t let the battery drop lower than one bar. I’d hate to be left in a situation where I couldn’t adjust the stimulation.

I can’t say there is a routine to my controller’s day, afterall, chronic pain drives the day which is unpredictable. I expect one day there might be a routine as we get to know one another. Of course once we get really familiar with each other, I’ll need to have the programs adjusted again.

At my last appointment, BSSSI was reprogramed. I began with about 7 programs (some of which were adjustments of original ones) but I pretty much used about 3 main programs:

  • Legs (as implied, stimulation mostly down the back of the legs)
  • Trigger point (seems to be as close to the pain point as anything has ever been)
  • One (a kind of one size fits all/general stimulation)

I asked for a couple more out of curiosity:Stim Controller 49972

  • General Bot (with focus on feet – bliss!)
  • General Legs (without focus on feet)

Pretty snazzy names aren’t they? The least of my worries, I can get creative later.

I don’t fiddle alot with the controller but while we’re getting to know each other, I do carry it everywhere except the bathroom. I’ve only just been a little confident to leave it in my studio, if I’m in the gallery (a stair case between the two spaces). If I’m having a bumpy day, I definitely take the controller with me. I’d hate to have to manage a flight of stairs if I’m in pain.

I always sleep with controller – well it’s on my bed side table.

So mostly, I set myself before sleep. I know that sounds weird as pain is 24/7 but there is a beginning to it – that’s at night when it’s worse.

Legs are probably the most popular setting here. If I’ve had a bigger day than normal, my legs ache and I know the restlessness is likely to start. I get ahead by ramping up the setting and it prevents me from the thought of wanting to chop my legs off.

So when I wake up, I check in with my legs (or rather they tell me what they’re feeling) and I leave my leg setting on if they’re feeling wobbly, weak, sore, acheing and crampy (yes, all those things). If they’re feeling ok though, I switch to ‘one’ setting, the general overall stim. It’s the setting that doesn’t need to focus on any particular area – it just needs to do its thing. It does. I love it. Zzzzzz

If all goes well, I keep ‘one’ on. I don’t change the stim much.

Stim Controller 49952However, I reach for controller if:

  • I sit too long
  • I sit without my cushion somewhere
  • I commute in a car
  • I lift a little over my limit
  • I walk in shoes that don’t suit me
  • I jump because something unexpected happened
  • it’s windy
  • it’s the time of the month
  • it’s the middle of the time of the month (ovulation)
  • I sat too long and my toilet functions aren’t working properly (rectal spasms)
  • I’ve been intimate with Theo the night before (more rectal spasms)

and a load of other reasons – you get the idea.

On really bad nights, I reach for controller often during the night.

Sometimes when I’m feeling a little electric, I reach for controller and turn it off. Can you believe I get overstimulated? Just as well the site is subscription based now… wouldn’t want too many reading that!

I should also report the time when I learned that I should always switch controller off. It was after resetting a program and putting it in my bag… whilst walking. In just a few steps, I realised I was leaning on the controller, cranking it up with every bouncy step. I nearly star jumped in the middle of my quiet country home street.

Stim Controller 50262Funny, but in reality, all qualities of my new relationship with controller. Here’s hoping the relationship blossoms into a painless love affair and endless stimulation.

 

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  • Sue Carey

    This article made me smile, and want to give you a big hug!
    I love your honesty, your wonderful sense of humour throughout, and despite everything.
    You have given me hope for my own journey, which is always greatly appreciated ~ thank you 🙂
    I have just had the staples removed from my right buttock, having had my implant surgery a fortnight ago. I understand what you mean now when you talk about “getting to know one another”. I know it’s only early days, but I can definitely feel the benefits already.
    I have a Medtronic 97702 which was programmed at UCLH in London. She has preset 2 programs and I control the volume, basically.
    So far so good, but I am aware of the healing that is still ongoing internally.
    Thank you as ever for your support.
    It is so great to know that I have someone who walks the same path, despite the distance between us. Obviously I wish that the path was a different one; but it’s nice to have a friend & companion along the way…
    I’ll bring the sandwiches and you bring the wine, and maybe, just maybe we could stop a while and picnic; both of us able to sit on a blanket on the ground and talk about art, your gallery, my sweet seaside town and our amazing men!
    All my love dear friend,
    Sue xx xx

  • Franny

    Love reading your posts Soula. So pleased you’re managing . I get my permanent stim on 4th August. Wish we didn’t have to “just manage”.

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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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