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!

Intermittent Self Catheterisation (ISC)

A Girl’s Guide.
to intermittent self catheterisation

Urinary retention is part of the picture for some people with Dysautonomia.  Sometimes, the nerve messages that allow us to pee, don’t work. I am so proud that I can manage my retention myself, thanks in no small part to our in-home continence nurse program here in New Zealand, some googling and a lot of determination!

Learning to self catheterise is one of the hardest things I have done.  Somehow, it is a mental hurdle as well as a technical one.  Even when you have been doing it for a while, there are times when you can’t make it work.  Those times can bring a grown girl to tears.  When that happened for me, my hubster got googling. He passed the iPad through the bathroom door with a quiet “this might help?”. The pictures he found for me helped a little, but I really wished I’d had a more practical guide.

There is nothing so relieving as being able to empty your own bladder. However, when you feel sick, or bending double makes you dizzy, it can rapidly become a stressful situation.   But it is possible!  I and my fellow self-catheterising friends will tell you that once you get used to it, ISC is a proactive skill and a significant personal achievement. It gives you back control of yourself.

For the next two weeks, I am embarking on a new self-catheterisation routine.  Instead of catheterising when I think I have gone into full-blown retention (no pee for two days), I’ll be catheterising after I go to the toilet and measuring my residuals. My urologist wants to see if I am retaining even when I think I have finished peeing.  My bladder picture swings from retention to incontinence.  At the moment, I’m incontinent. It might explain this.  So, because my mind has been full of all the things I will need to do to ‘go mobile’ with my catheterisation, I began to think about how much I have learned in the last two years. I wish there had been a guide that made sense to be back when I began. So I am writing it!  This is for all the newbie cath girls (sorry boys, your process might need to be written up by a guy).

What you will need:

Sterile medical gloves (or sterilised hands)
Catheter (these are supplied in New Zealand by the district nursing service)
Lubrication jelly
A small handheld mirror.
Baby wipes or antibacterial wipes.
Jug (only if you are asked to measure)
A chart and pen (only if you are asked to measure)
A private, lockable location.  You can sit on the toilet or recline in the bath.  When I first started, the bath was easier.  Self catheterisation takes longer than a normal toilet stop. You need to be able to do this uninterrupted.  If you have children and they are very little, set them up in a safe spot for the duration, or even better, have someone watch over them while you are doing your thing.

First, do a vaginal reconnaissance(!)

Before you begin with anything, you’ll need to know where your urethra actually is.  You may be surprised!  I once spent half an hour stabbing my clitoris (ow ow ow!) because I thought my wees came out from what looked like a hole under my clitoral hood.  Uh, nope!  Everyone’s anatomy is different. And the diagrams on the internet aren’t very detailed!  Check out this one.  See?  Not so easy to see what’s what. (Source)

en3009646(I think I shall have to draw something more useful and put it in this post!  Time to shine a light on the subject at hand).
It’s really important to get to know your ‘nether-lands’.  So, to find your urethra, recline in the empty bath with a hand mirror.  Gently stretch the skin on both sides of the invisible centre line that goes from your clitoris to your baby-hole (excuse the basic terminology).  As you stretch along that line sideways with two fingers, look for a tiny opening.  Urethras are very good at hiding and in the beginning, it took me a long time to figure out exactly where mine was!

When you are confident that you know, you are ready to begin.

 

The Girly Bits

 

Gather your materials

…where they will be easy to reach, on a nearby bench or stool. You’ll be one handed, because one of your hands will be holding your ‘nether-lands’ in the right place, so have everything near to the free hand. I am right handed so I use my right hand for all the busy work.

Prepare your girly bits.

Thoroughly clean the areas around the labia with the wipes.  Wipe the inner labia and the area between the inner and outer.  Clean all the way from the clitoris to the poop hole. Always wipe in a downwards motion, never using the same surface of the wipe for a return swoop.  Discard wipes.  Sterilise hands again or snap on new gloves after you have done this.

Get your catheter prepared.

Only open the end of the packaging near the tip of the catheter.   That is the end without the rubber fitting.  It is pointy and has a little hole in it.  Free the end from the packaging and swipe some lubricating jelly on the end of it.  I cover about 3-5cm of the end of the catheter with jelly.  Not so there are globs of it, just so it has a coating.  This will help it slide into the urethra more easily.

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Fold the packaging back over the lubricated end and put it somewhere in easy reach.  (NOTE: If you are using a tube of lubricating jelly, rather than a single use sachet, make sure you never touch the end of the tube with unsterilised hands.  I squeeze a tiny bit out onto my glove and swipe the catheter end through it. This tube should stay with your catheterisation kit, not be used for other purposes).

Just a note on catheters; people develop their own preferences.  The internet picture above shows a short catheter, the photo shows a Nelaton size 12, 40cm catheter. I prefer to use long.  The bigger gauge the catheter is, the faster you will drain, so once you are used to it all, a larger catheter might be your preference. Talk to your continence nurse about which one might be right for you.

Do the business.

You’ll need to be in a position where you can see what you are doing. If you get dizzy, you’ll need to be somewhere safe.  To start with, reclining in the bath was the answer for me.  Now, I perch on the front edge of the toilet seat.   If you are required to measure, position your jug on the floor or bottom of the bath, between your legs. Remove the catheter from it’s sleeve and let the rubber end fall into the jug.  If you are not measuring, you can let the rubber end fall inside the toilet seat.   Keep a good length of catheter up from the toilet bowl though, you’ll need it.

Using one hand, hold back the labia, so you have a good view of that imaginary centre line.

Pointing the catheter in a downwards motion, but pressuring it slightly inward towards you, slowly slide the catheter down along the centre line between clitoris and baby hole. You may or may not have enough sensation to know exactly where the hole is; don’t worry,  practise will help with this part.  When you are at the urethra, (or you think you may be close based on your reconnaissance!) angle the catheter in pointing towards your tail bone.  Repeat this process until you reach it. You will know you have hit the target when the catheter goes in and it stings a little (like that sensation you get if you have a urinary tract infection and you pee) but the sting should be momentary. Feed the catheter in until the wee starts to flow. Eureka!

When the flow slows down,  gently push the catheter in slightly more.  You may have more wee to come, right at the bottom of the bladder.  Do this a few times until you are happy that your bladder feels empty.  Slowly remove the catheter and drop it in the sink. You’ll attend to it soon.

The lost urethra

Pack up.

Gather up the catheterisation kit and return all bits and pieces.  Check the measure on your jug, write it down.  Run tap water through the catheter and shake it out again.  If you plan to re-use the catheter, it will need to be sterilised (microwave sterilisers are great for this) but I recommend a single use when you are just starting out.   Empty jug into the toilet and flush. Remove gloves and dispose of them.   Return your catheterisation kit to its home.  I keep mine in the cupboard next to the toilet.

Recognise Your Brilliance.

Look at yourself in the mirror.  See that person?  She is a total legend.  She deserves certificates and gold medals and pats on the back!  You did it!  You brilliant creature you!  Sadly, you won’t be able to share this most excellent achievement with many, so your feedback will be minimal, but I want you to know that I know just how amazing you are!  That thing you did just there?  Skill!

Just a wee Problem

On my last visit to hospital, I was suffering with a pseudo-obstruction, my bladder had also stopped working. I was admitted through the emergency department and was to go straight to the gastroenterology ward.  The ED staff must have been busy, because on this occasion they decided the ward staff could catheterise me.  Usually, I arrive to the ward already done. By the time I made it up to the ward I’d been retaining wee for two and a half days.  It was excruciating, even without the pseudo obstruction pain and a tummy that was distended further than a ten month pregnancy. When the nurse arrived to settle me in, I whispered awkwardly that I was very sorry, but I had my period and I was in desperate need to be catheterised, “so, so sorry”.  I felt embarassed that she would be doing it, apologetic that she had to.  She shrugged, came back with the catheter and a sachet of lube.  “You do this at home all the time, no reason why you can’t do it now” she said, turned on her heel and left me to it.

I was so shocked I couldn’t speak.  I knew I needed to sort it out straight away. The pain and discomfort was not about to release me just because I was upset.  I didn’t have the emotional energy to fight with her. I took a big shuddery breath,  picked up the gear and inched my way over to the bathroom.  By the time I got myself down onto the toilet, I was in tears.  But even if I hadn’t been crying, I couldn’t even see my girly bits because of the abdominal distention. I took a big breath and did it the way I always do. I imagined I could see what I was doing.
And, there!  I got that catheter in, first go, sight unseen!
The relief was incredible. I’m sure I was holding more than 1L of pee!  It took a very long time to drain my bladder.  But as it drained away I felt so proud of myself. Some things are hard to explain, but when you feel out of control with your body, victories like this one feel pretty important. I would have liked to have run the corridors of that ward shouting “Guess what I did?!  Bloody marvellous, I am!”  I would have liked to have shoved that catheter up that nurse’s nose. That’s what!  But I got myself back to bed, curled up and cried a little bit more.

Wee problems are not really that wee, at all.

 

Who I Appear To Be

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It’s a strange double life I am leading.  Like i’m a secret undercover agent.  Except I am not saving the world from crime, I’m just surviving, one day at a time.  There’s this magical spell that covers my words, so when I say “I’m not well”, people don’t hear it.  If I do manage to explain anything to them, they forget it and assume I am well the next time they see me.

I don’t look sick, I don’t ‘act’ sick.  I just am.  Sick.

Deep undercover in my role as a ‘well person’.

Because the person you see, is Rachel, the wife, mum, the lady who is there sometimes… but lately, not so much.  You see me in the car, driving my son to and from school, or at the supermarket, leaning on my trolley and contemplating my groceries.  You might see me on a weekend, in a cafe with my family, or having a picnic in the park.  You don’t perceive a problem because you may be wrapped up in your own problems.  Busy surviving your own stuff. Life isn’t only hard for me.  And, after all, I am an expert at covert operations.  It’s actually easier than being real.

Sometimes, faced with friend’s status updates about feeling tired, or having a cold, I would like to post a real status update of my own.
Something like:
“YAY!  A new anti-nausea med to add to the mix!”
or 
“I’m so CHUFFED!  I just administered my own enema and it WORKED!  Go me!”
or
“Today the courier guy said he hoped I would have a better afternoon, ‘cause he could tell I had already had a terrible morning.  And that was so NICE.  So kind from another human being.”

But I don’t.  I stay undercover and spend my energy on making the least waves possible.  It’s not that I don’t want to tell people what is going on with me.  I’m a talker.  Nothing is sacred, I’ll tell you everything, in one sitting, given the chance!  No, it’s because I have learned from my experiences that people really don’t mean
 “How are you?”  when they ask it.
People really don’t want to know.
And the crushing reality of that, when you try to answer the question, is truly devastating.  It makes you feel small and insignificant. It makes you want to run and hide.
Undercover.

Rachel the wife:  is rarely intimate with her husband anymore, even though she loves him.  She can’t bear that she smells like urine, that she might leak wees or poos in bed.  So she goes to bed in continence garments and tries to pretend that intimacy will happen tomorrow night.  Cuddling is better than nothing.  But she is afraid, so afraid that he will stop seeing her as an attractive person.  Her belly distends from gastric dysmotility and she feels his eyes appraising her body.  His face is blank and she can’t read it, so she imagines what he is thinking… it isn’t complimentary.  He misses who she was and he wonders how they got here.  He’s not sure if he can keep going forever like this.  What will happen when they are older?  How many more problems will there be?  Will he be her carer?  She imagines his thoughts and rolls away from him, hoping he will somehow know how much she loves him.  She is so ashamed. He deserves so much more than what she has become.

Rachel the mother:  asks a lot of her children.  They have to do jobs, unlike most children their age.  Her daughter makes her cups of tea and is kind to her brother.  Her son strokes her on the face and tells her it will get better.  She knows her kids are extraordinarily empathetic.  She’s proud of that, but she worries all the time.  At what cost to their childhood?  How many ways will her being ill, screw them up?  Can she stop their anxieties?  Should she go more undercover?  She knows she can’t do all the things they want her to do.  She agonises over how little she can help at school, on trips, at extracurricular activities.  She pushes herself to take them where they need to go, but the cost; it is so high.  Every morning, she braces herself in bed for the efforts of every afternoon.  She cries.

Rachel the friend: is best online.  Or text.  She has limited energy to maintain friendships.  So she has few friends and lots of acquaintances. Her  friends are so very special, so vital to her joy.  She loves people, but it’s hard to keep it going when her energy is spent on her kids, on her husband, on doing her housework at snail speed.  She is often lonely, often down.  Mostly, she seeks solace with other people like her, from the comfort of her bed.  They are in bed too, online, on laptops, tap tapping away.  Shouting a two dimensional hello from a continent far away, but not expecting her to walk the malls, make small talk over a glass of wine or go out for a night on the town.  They get it.  Those cyber sick buddies, her new social circle.

That is me, driving my son to school.  I am fighting back nausea, running the torturous marathon of a five minute drive.  I smile at you, his teacher, through the window of my car while my body aches all over and my left eyelid muscles fasiculate into an unintentional wink.  My eyes are so dry that I am blinking like a cartoon flirt. I hope that you won’t pause to chat so you won’t see what a wreck I am today.  Thank goodness I can drive through to pick up and don’t have to stand.  I couldn’t stand today.  You smile and tell me I look well.  I thank you.  What else am I to do?

That’s me, in the supermarket.  I am gripped by the searing heat of nerve pain, like my whole left leg has been dipped in a vat of hot oil.  I grasp hold of my trolley and try to look like there is something interesting in it.  I calculate whether there is enough food in there already to feed my family this week, because I know I won’t be shopping anymore today.  I brace myself for the lifting of groceries into and out of my car.  I wince at the thought that someone will judge me for using a mobility car park.  I swallow it all and smile at you as you pass.  I know you from school, right?

That’s me in the cafe with my beautiful family.  I want them to have as many memories of normal togetherness as they can.  I wanted to stay in bed, but not as much as I want them to have an ordinary activity.  We’re ordering and I am watching the waitress blur in and out of focus.  My head is a grey fog this morning.  I need to focus on the conversations but it is taking enormous concentration.  I don’t know what I want to order.  Any of it might make my tummy problems flare.  My son says something funny, like he does, and I laugh.  It is a spontaneous, loud, laugh.  It’s out before I can moderate it.  My bowel spasms and my breath is snatched from me.  The tears sting my eyes.  I see you walk past the cafe, I smile-grimace, and wave.  I know you from the kids’ swimming, right?

That’s me, lying on the picnic rug.  For me, it’s like a raft in an ocean of ever moving waves.  I am clinging to my piece of flotsam, watching the kids riding their bikes.  I am talking to my patient husband, he needs normal, too.  I feel the shakiness inside myself and wonder if it’s nearly time for my pills. No, not yet.  I concentrate on the feeling of the breeze on my hair and face.  It’s a beautiful thing.

You see me, care free. You know me from somewhere, but I am not who I appear to be.