A Stitch in Time

Some years ago, I had a rather significant operation. I called it the ‘hitch and stitch’. An internal lady parts renovation. One part of that renovation called for my uterus to be stitched up via my pelvic ligaments to my spine. It was a great thing to do, for good reasons, and it worked. But the stitch on the left side seemed to be the cause of debilitating pain through my pelvis and down my left leg and ankle. I’ve been managing it since then; pain, pain meds, the endless juggle of when I can take them and have the relief I so need.

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Waiting for surgery.

When you are taking really strong meds, there are some things that just aren’t right to do, like drive your kids around, or work. You can’t rock up to a teaching or a modelling job with a floaty head because you’ve just taken your oxynorm. So on the days I worked, I just had to deal with the pain. There have been many tears shed or short words delivered to my nearest and dearest when I am back home after a day of smiling through pain.

Pain sucks.

I’ve learnt to adjust things as I go. Thinking all the time “can I take my pills yet? When will they kick in if I take them now? What else do I need my brain for today?” and then, the pill is swallowed and the other-worldly, floaty absence begins. Sometimes, when it kicks in, I cry with relief.

I am still aware of the pain when I take my pills, but I no longer care about it. Unfortunately, I no longer care about most things when I am in that state and finding words is a challenge. I might drift off mid-sentence, or repeat the same thing multiple times.  Writing for this blog doesn’t work when I am under the influence of my pills, or doing the freelance work I used to enjoy so much. So I’ve written less.

Managing pain meds makes me anxious, because I don’t want to give myself an addiction problem. I also hate my kids seeing me like that, tuned out. I often don’t take my meds when perhaps I should for that reason. But what can you do? Life goes on. Mother work doesn’t seem to be outsource-able. Pain just exists and we survive it. Centuries of women have dealt with women’s issues and got through. And if we can’t, we fall in a heap for a while… and if we’re lucky, the troops rally.

I have felt so fortunate to be in remission from Pandysautonomia that I have felt I cannot legitimately complain. I mean, my life, even with pain is so much better than before. So mostly, I have just shut up about it. People don’t generally want to know anyway.

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…suffering isn’t usually something it is socially acceptable to ‘selfie’

The day before yesterday was an important day for me.  I had a surgery to attempt to fix the problem with that stitch. My uro-gynae surgeon is Tim Dawson, one of the worlds finest medical people. He’s so kind. Previously he had done a hysteroscopy and identified the inflammation, and the location, of the rogue stitch so he knew exactly what to do. We are fairly certain this is the culprit. And here it is.

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This little stitch caused me a lot of grief!

My arch enemy, the cause of my pain, the author of all that suffering. It’s so small! But so are the nerves it harassed. Aggravated nerves can pack a wallop of pain when they’ve been bothered for a long time. When the nurse handed that stitch to me in a specimen bottle, I examined it closely: my Evil Nemesis. I thought about how much I hated it, that small but powerful stitch. I felt like you might feel if a scary spider that bit you is trapped in a jar. Like a victor.

Now, we wait. We wait for the bruising and dissolvable stitches from the operation to repair. We wait for the other procedure he did (an intra-uterine ablation) to heal. We wait for a good number of weeks on strong pain relief to see if my brain can cease firing on the same old pain pathways. And then, we’ll know if it worked. I feel hopeful.  I’ve been working with the Pain Team from ADHB and they have been so outstandingly helpful. They made sure that this time, there would be no re-admission to hospital from pain flare. I’m so lucky to have access to that team, they really know their stuff.

Wouldn’t it be great if removing this stitch in time, saves nine!

Here’s to all you ladies, who like me, never seem to have an easy time of the lady-parts-shebang. To all the girls suffering with difficult periods, menopausal madnesses, fertility frustrations and women’s woes. Here’s to you, to us.  We often don’t discuss these things because it is awkward, or embarrassing, or deeply personal. But if you are out there hiding in plain sight, suffering because of your lady business, I send you solidarity. Hang in there sisters!  The other side of menopause shines like a beacon of joy just over the horizon!  Let us sally forth!

And especially, here’s to the ladies who stood by me, offered to help and made me feel okay, to Pru and Tamra, to Flo my ever-wonderful bestie, to Mo and Toni, Noodle, Bunny, Bee, Nettie and Trissy.
Sisters in biology and sisters in soul. I am lucky to have you on my side.

Just look at what we can do even WITH the difficulties of our ‘downstairses’.  Women are incredible!

Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

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Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org