The Business

I love the Flight of the Conchords.  Whenever I hear the word ‘business’ I want to just sing this song:  “It’s Bidness Time”… tee hee.  Here’s the song, because it makes me laugh so much.  But the business I’m talking about today is a very different kind…

The business of living is the opposite to what I have always thought. We think we know what this life holds for us. We’re that arrogant… or that foolish. We let the past and how things have always been build a logical picture of what will be. As if this life has a formula that makes solid, mathematical sense. Except it never does. Life’s twists and turns are complex, unpredictable and often quite weird. Less maths than chaos.  Less logic than creative. But we persist in thinking we know what’s coming. If only we could use that belligerent belief as a more positive force! But we don’t. We know better.

We map our futures and determine the course of our days as if we’re in charge. Pah! You know how it goes… because this happened, that will happen… because I’m this kind of person, that will never happen… because I’m doomed to failure I will fail… because nothing ever goes right for me… because our family genes are messed up… because good things only happen to other people… because that doctor said I could never… because there is only one possible pathway  (as if there is a sat-nav for the soul!)… because you can’t make a silk purse out of a sow’s ear… because. Just because.

And a thousand other silly statements we make to ourselves. A daily manifesto of negative expectations. Have you thought about being a little less human about it all? I’ve been trying lately to just stop analysing. To stop telling myself how it is going to turn out. To live in this moment instead of the next, or the last. I guess it’s part of the letting go. Humans are so expert at making meaning out of experiences. We test our hypotheses all the time with self fulfilling prophesies. Limiting ourselves based on what we know. But what about all the things that we don’t know we don’t know? The infinite combination of possibilities outside our ken?

A girl I have talked about a lot on this blog is Michelle Roger. I rave about her because she is truly wonderful. When I was lost in my diagnosis, her blog lit the exits out of my spiralling mindset. She’s been battling Dysautonomia for so long, she’s given it a name. He’s the unwelcome Bob, who lives with them. He’s an arse. He gives her jip. You can find her blog here. And even though her case is severe and complex, Michelle keeps doing the things she loves; anyway. She is a gifted writer who recently won a mentorship with Writer’s Victoria. She performed one of her pieces at the Emerging Writer’s Festival last year, and again this year. She’s been published. She carries on, and takes opportunities, even when most bystanders would say “how are you going to manage that?”. Somehow, that’s how. Somehow, anyhow. She’s a woman I admire. She’s a modern day Frida, making her art from the truth and pain of her experience. And she’s funny too, if you like a bit of the quirky/classy/smart, you’ll love her.

When I had a phone call yesterday from Vivien’s Modelling Management, telling me they’d like to sign me, and that 62 Models, here in New Zealand would too, my little brain expanded a bit. What an incredible opportunity! A whoppertunity! It’s so exciting to think that what I am, what I have; all of me, might be useful in a different way to what I thought. It aligns with my values around diversity, and being able to find the work that works for you. It gives me work in short bursts, with opportunities to recover in between. It will bring income back into our home. And one day, it might even be a platform for more awareness. A thought that surprises me. I never imagined this kind of thing. It was outside my experience and beyond my self-belief. I didn’t know that this opportunity could happen for someone like me. It wasn’t in the plan.

So. How will I manage? I don’t know. I just will, somehow! I’ll be picking the brains of my friend Helena, an established model friend who is also a Dysautonomia chick. I’ll take the advice of Claire, who had a classic response when I asked my friends that question yesterday. I am so fortunate to have a group of gals in my Dysautonomia community who have become very important friends to me. We chat online; they know all the ups and the downs of my journey, just as I know theirs. They get it all, and they are resoundingly positive. It fills me with good cheer. Claire said:
“-Silly! You’ll do it the way you do everything else – with a smile, kick ass attitude, and much complaining to us, about how fucking hard it is…” haha. Yep. I think I will. My girls have got my back. How much joy like-minded souls bring to this life. Solidarity and sisterhood. It’s important everywhere you go.

Last year I wrote a piece about my indomitable Granny (Her Stellar Career). It’s a good read if you have been feeling like your dreams are out of reach. She knows a fair bit at the ripe old age of 93. When I told her about this modelling thing, she twinkled and said “Dear, would you introduce me to them so they can sign me too?” 🙂  I think I’ve been learning her lessons. Because instead of sitting back and feeling like this life has passed me by, even though I might be forgiven for doing that, I am taking action. Like Michelle. Like Joyce. Getting busy with The Business of Now.

How are you at living in this moment?
Do you worry a lot about the future?
Do you think you know what it holds?
Let go a bit.  Let go and let life take you somewhere you never expected…

8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

B(4)

Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

It changes how you see yourself, which(1)

Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

Find ways to tell people how much you(1)

Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

Find ways to tell people how much you(2)

Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!

 

Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

Picture of a girl in a robe, asleep on the sofa and the words 'top tips for dealing with chronic illness'

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.

Chronic Illness.  Top tips for dealing with chronic illness.

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.

 

Between the Devil and the Deep Blue Sea

For aeons, people have traipsed to the sea, looking for a cure for their ailments, a tonic for a weak constitution. England’s coastline was dotted with seaside health resorts where people could ‘take the air’ and remedy their ills. I used to wonder about it, as a teen, reading Austen, what was it about the sea that made people think it could make them well?  And how did the sea air even make it through their substantial swimsuits?

 

source:  www.austenprose.com
source: www.austenprose.com

 

And then, in my own way, I too came to the sea for some coastal therapy. In need of a break, a rest. A holiday. We holed up in our Tongan vault-ceilinged fale by the aquamarine ocean, breezes fanning our night time slumber. Just a few steps to the sea. White sand, shallow, calm seas, kissing the shore in an effervescent line. The rhythmic hushing my soul has craved, without me even understanding that I did.

I am the child of a Bay of Islands girl. My mother was born for the seafaring way; I still can picture her on the bow of a yacht, eyes closed and face tilted to the sun. She loved the sea and it’s close cousin, the coast. I have never shared that love. But here, beside the gentle sloping sand. Cradled in the warm and friendly cocoon of a tiny island, the sea is working it’s magic on me. Is it part of my DNA, this sea?

I swam in the ocean today. Twice. Floated like a water baby under the skies, rolled over onto my tummy, head pillowed on a lilo, idly watching the sand. The shore edge was sprinkled with mother of pearl fragments, glinting in the sunshine. It is so beautiful here. And in that water, for a time, I am weightless and free. For the first time in over five years, I feel the burden of my body lifted and I notice the dissolving of my ever present discomforts.

Did the ocean give me that reprieve?

I was floating with the current across the shallows. My vision was perfectly clear, my dizziness was gone. My head didn’t feel like an enormous pressurised bowling bowl, balancing on my neck . My joints and frame felt like they had when I was a small child. I was free of the concerns over my bladder and bowel. My stomach wasn’t cramping, the nausea was gone. Even the burning prickling neuropathies seemed numbed by the cool water. I was buoyed up. Carried along like a child. And it occurred to me, suddenly and shockingly, that I felt well. For a few too-short minutes, I felt like I belonged in my body again. I didn’t dare move a muscle, it was sublime perfection, feeling that way. I tried to memorise it. I tried to ignore the fears, tapping at the inside of my mind… don’t get used to it… it won’t last… oh my god, how can you go back to how it was after feeling like this? I just lay there, clinging to that lilo, staring at that one section of glinting sand floor, arms warm under my face, hips swinging free in the water. I lay there and soaked it up, that feeling of wellness. And a line from my friend Wordsworth (Lines composed above Tintern Abbey) crossed my mind:

Screen Shot 2014-08-15 at 10.57.03 am

“In this moment is life and food for future years”.

It’s cool in Tonga at this time of year. There are soft breezes and gentle temperatures in the early twenties. The ocean is cold when you first get in and then, you acclimatise and it becomes warmer than the air, an enveloping presence. Holding you up, rocking you in it’s benevolence. I am loving my new found friend, the sea. I didn’t know how therapeutic it could be.

For at least five years, maybe longer, I have been fighting a sebborhoeic dermatitis outbreak on my scalp. I suspect it is from all the strong medications. But whatever the cause, it has become a painful maintenance chore, a difficult distraction, an endless itch. My head regularly breaks out in sores that crust and weep. And I am always painfully conscious about the flaking snow that may be accumulating on my clothes, or the scabs that might be trapped in my hair. I have tried what seems like every known remedy. Sometimes I get short term relief, but then it goes back to the way it was. So when I arrived here, I was nervous about getting my poor sore head into the sea. I lay on my back and gingerly let my head ease back into the water. I could feel the sting of the salt on the tender raw patches of skin. That gave way to a pleasant tingling. Now, the scale that has clung to my head is lifting. Underneath it, new, calm skin. Each day I am in the sea it improves.

Is this reprieve from the sea, too?

I think about bath salts and I wonder if they are an attempt to bring the therapy of the ocean into our bathrooms. I think I will have to try them when I am back home. I wish I was a millionaire and could transport all my online Dysautonomia support group friends to a place like this. Somewhere they could all ease into the soothing benefits of the ocean. Somewhere they might, even for a few moments, get to feel well again. My eyes well up with the complex dichotomy of gratitude and that old frustration that I cannot make the world turn my way, I cannot fix it, I cannot wave my magic wand.

I woke this morning trapped in the old familiar state. Desperate to get up, but too dizzy and achy to move. I fumbled for the bottle of water and my pills. I stared at the mosquito net shrouding my bed and wondered what I usually wonder: How will I manage today? And the thought occurred to me. I am between the devil and the deep blue sea.  I know which I prefer.
I will lie in the ocean. I will float in the sea.

I hope that you will find your reprieve, in whatever form it comes for you.  Maybe it is a laugh with an old friend, a book that transports you, making art or taking heart from a song.
I hope that you will recognise it when that moment comes, your moment of life and food for future years.

And I wish that I could make it last for longer. For all of us.

 

PS.  It turns out there are scientific reasons why…
http://www.huffingtonpost.com/2014/08/23/wallace-nichols-water-book_n_5686271.html?ncid=fcbklnkushpmg00000063