Surgery

Yippee Ki Yi Ay.
I’m on my way.
Back in the saddle again…

…not exactly. This time I’m back in the stirrups again. This will be my seventh downstairs-region-surgery and I feel like I’m becoming an expert at donning the theatre garb. I’d prefer to be donning the actual-theatre-garb. Reckon the other patients in here would too. We’re lined up in recliner chairs, hairnets and compression knee highs on, politely smiling at the surgeon and anaesthetists who call on us, trying not to think about the fact that very soon, our hoohas will be seen by those very same people.

I don’t like it.

I have set my jaw in resolute forebearance. My exterior is calm and quiet. Only my blood pressure gives anyone any clue that it upsets me to be back here again.  The nurse hums and hahs and goes off to let them know. She’s worried about stroke risk. I’m not, I know it is just a reasonable physiological response to gynae surgery. If you think about it, it’s absolutely ridiculous. I have to suspend my mind, somehow, and not think about the fact that there will be knives in my lady bits, while I am unconscious! Of course my blood pressure is high, that is an alarming thing!!!!

So, off I go. Pretending to be brave again and feeling like a scared kid.
(be gentle with me kind surgeon)

I look forward to being on the other side of it.
How do you cope with pre-op nerves?

 

UPDATE:  They were so lovely and gave me lots of nice medicines to make it all okay. I’m out and delightfully ‘lala-land-y’. Resting in bed for a bit now and no lifting for a good long time.  Shame I couldn’t get them to instruct that there should be no cooking, child ferrying,  washing or otherwise domestic delights for the next six months!  Ha.  Just thought I’d let you know that it all went really well, the surgeon found two more unhealed incisions to repair from the last surgery, so it is good that I agreed to get it done. Should be good as new now! 😉  Happy days. I’m off for a snooze.

 

Michelle Roger: All the Feelings

Michelle was the first blogger whose work I read that wrote as if she was living inside my own brain. I found her blog before I fully understood what was wrong with me and I remember devouring post after post until I had finished reading her entire site. It’s a big blog too, Michelle’s been writing for quite some time!  Her posts were funny, irreverant, authentic and informative. I laughed myself silly, I cried, I wondered and I thought about things. She wrote about the issues no-one else seemed to talk about.  She made me want to write myself. I am beyond honoured to have Michelle guest posting on my site today.  She’s my blogging hero.  Here she is discussing the importance of being able to express even the crappiest feelings. I think this post is really important.  It originally appeared over on Michelle’s blog here.

Meet My Peeps

I’ve had a bit of an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it’s difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I’ve noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk it’s really rubbed me the wrong way. I’ve found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I’m all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don’t exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong, is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it’s tough and you might as well have said, “on my weekends I enjoy sacrificing small furry kittens to Beelzebub”. That is where the crazy lives. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it’s not okay in the face of the overwhelming positive brigade.

Say 'it's tough' and you might as well(1)

Sometimes what you need is one safe place to say it’s not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don’t need solutions. We don’t need to be told that we should stop being so negative. That we shouldn’t share. That we should always try to find the positive. Some days you simply can’t, AND THAT’S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same head space as we are.

In psychology there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or it’s lack, can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has it’s place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don’t need. We have a range of emotions for a reason and each have their place. We are all in different places in this illness journey and we can’t expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven’t experienced in a long time. My bradycardia was the worst it’s been in….well, to be honest it was probably the worst it has ever been. I experienced all the crazy scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabalised somewhat I realised I was over it. Really over it. I’ve been sick a long time. I’ve had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn’t scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone or crazy. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it’s place. Today I can laugh and smile again. I made it through. Today’s emotion losses much of it’s salience if it’s not seen alongside the darkness of last week.

Living with illness is a crazy ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don’t exist or minimising another’s experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that’s one burden we can change.

-Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.

 

YOU ARE SIMPLY THE

Because, I’m Happy.

There have been some significant changes in my physical experience of life lately.  I’ve been putting them all down to my new steroid treatment regime.  A not-so-scientific assumption made by me.  You see, my improvement is rather a lot better than can be explained by my protocol. It doesn’t make good scientific sense, hence the terms ‘magic’ and ‘too good to be true’ from my general physician and immunologist.  And my attendant happiness is quite over the top, according to my nearest and dearest. It’s not just a surprise to the doctors who have seen me, my husband, kids and best friend are all a little taken back by this new ‘feelgood’ Rach, too.  She’s a lot different to the previous Rach. Even though I have been working really hard on maintaining positivity and searching for answers for all these years; this level of happiness has only been in my world since the immune suppression therapy happened.

Today, I received an email from my friend, Sheryn. Attached was this fascinating TED talk by Shawn Achor.  He’s pretty famous for his psych research into success and it’s relationship to happiness.  You can read more about him here.  And you can watch his TED talk below, more than 9 million people have already, so there must be some compelling ideas in there!

Something he said really struck me.   See, when you are sick, people feed you platitudes and positive thinking speeches a lot. And it all falls pretty flat.  After a while, you even stop responding to them, because those proverbs, or ‘silver lining’ statements don’t actually help much. They just make you feel inadequate for not being able to take them on board.  More work, more effort, more trying in an already trying set of circumstances.

Shawn has done extensive research on happiness, and this is what he says about it:

“Happiness is NOT the belief that everything is great,
happiness is the belief that change is possible”.

This, and some of the other things he said in his very entertaining talk, have had me contemplating my state of wellbeing slightly differently.  Is it possible that I ‘feel’ better than I can reasonably claim to feel, because I believe that my circumstances are changing? Is all this upsurge of happiness creating a better experience of living in my body? Is it in fact, the reduction of fear for the future?  Perhaps, something to do with laying down that burden of believing I am headed down this disastrous path with only one possible outcome.  Now, I have other possibilities.  Based on my strong response to steroids, we know that my problems are largely auto-immune.  An auto-immune aetiology means treatment, treatment means real hope.  Real hope breeds happiness, ideas about the future; a sense of buoyancy.  Could I be feeling inexplicably better, not only because of the immune suppression, but because I am happy?

It’s something to contemplate. I think we are learning more all the time about the connection between mind and body.  I’m not saying that if you are sick you just need to get happy and everything will be alright.  Far from it! There are genuine and significant physical reasons for illness.  And maybe there are emotional factors that can impact your illness further.  Or indeed, your wellbeing. Shawn Achor suggests ways we can improve our mental habits that will lean us into a more positive frame of mind, but I am not sure if being grateful for three things a day, journalling, meditating and performing random acts of kindness would ever swing most of the patients I know into a different prognosis. What I am saying, is that how we feel emotionally is a part of how we feel physically.  It’s something I hope to explore more.

How what we feel is connected to how we feel.

For now, despite how unsettling Happy Rach is to those around (!) I am riding the wave.   It might dump me at some point, and I’ll probably get sand in my togs and water up my nose.  But right now, I’m riding high, surfing that wave of happiness.   Can you see me up there on my metaphorical longboard, waving at you with a stupid big grin on my face?  Sunshine on my shoulders and wind in my hair.   Hope on the horizon…

Can you see me riding that metaphorical

Because I’m happy.

Bravo, Body!

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My fingers sink into the springy grass.
The broad flat blades are baked from the equatorial sunshine.
There are people everywhere, milling around the edges of the sports field;
the air between me and them shimmers in the fierce midday heat.
White painted parallel lines disappear ahead to a point in the distance.
I can feel the nervous tension of the other kids beside me; calves bracing,
ready for the sound of the starters gun cracking the air.
I lift my head and fix my eyes on the end of my lane.  And we’re off!
My strong, long legs pump up and down and I realise I am gaining.
I take a gulp of air, reaching my arms and legs longer and further,
pulling the track in toward me as I run.
The wind pushes my hair back from my face and smarts my eyes.
I am in the lead!
I turn to see who is hot on my heels just in time to catch them overtaking me.
Go faster!  ‘Run, Rach… just gun it!’
I come in second.
Elated with my efforts.
Harried hot breaths heaved into my lungs.
I slap my legs in appreciative awe. I had no idea they could do that!
I am grinning; I race back to the marquee, punching the air in exaggerated victory.
I am Wonder Woman, with wings on her heels.  I can fly!

—————————————————————————————–

When I hear the term ‘body confidence’ I usually conjure an image of a woman in a bikini, walking that terrible distance from towel to the water’s edge at a relaxed saunter.  She isn’t tearing into the break, desperate for the water to hide her sunless legs.  She has all the time in the world to endure the unflinching gaze of other beach goers.  Maybe she pauses at the water’s edge to lift her toddler from her hip, to laugh with them as their toes touch the glittery cold foam of the ocean.  She has body confidence.

Or that voluptuous wonder of a woman on the pages of the catalogue.  She’s all curve and sass and I want to be her.  Her head has that little tilt that says she knows people recognise her beauty.  She’s comfortable with her shape and her style.  She isn’t plucking at her clothes or shrinking herself into a dark corner. The easy smile says it all, she’s full of body confidence.

Or, I remember what it felt like to be that kid, flying down the sprint lane with the wonder of legs that take you where you want to go, at speed, barefoot.  Confident in the knowledge that all you have to do is look at that spot on the horizon and go for it.  Your body will run you there, your feet will fly you where you want to go. Or maybe swimming through the water and arcing up to break the surface with your face. Climbing a tree and letting the wind blow your branch like the mast of a tall ship, holding on one handed, far above the ground.  Body Confidence.  A complete unswerving belief that what you expect your body to do, it will do.

Since my first Tilt Table Test, I have had confirmation that true body confidence might be a tad displaced.  I learned then, that my autonomic nervous system was struggling to regulate my heart normally.  After nine minutes upright, my heart stopped beating.   It’s the reason why I have a pacemaker now.  It wasn’t the first time it had ever happened, by any means.  But it was the first time I understood what was happening with my body.  It made me ‘body nervous’.  As my situation has progressed, the nervousness has grown.   I am a planner, I like to do as much as I can, whenever I can.  I love heading out with my family, if just to enjoy that undistracted time in their company.  But I have to plan, make contingencies.  Always wondering “Will my body manage that?”  “Can I cope with that today?”  “Have I got enough energy in the tank to keep myself running for that long?”.  I miss body confidence.   I miss the feeling that I can enter a store to buy Christmas gifts and walk until the list is complete.  I miss the feeling of swooping down the slope on my bike. Of being able to stand by the sidelines to watch my own daughter run her race.

Today, I’m off for another Tilt Table Test.  For a Dysautonomiac, this test is a gruelling event.  You can find out more information about how it is run, here.  But in spite of the challenge of having one, it is one of our most effective diagnostic tools. This time, we’ll be using the data as a baseline for before and after my first lot of steroid treatment. My pacemaker will probably get a chance to show off it’s skills, and I am so glad to know it is there, ready to kick in if needed.  But nonetheless, I can’t shake this Body Nervousness this morning.  If I could just run away I think I’d be sorely tempted!

Do you feel body confident?  Or are you nervous about what your body throws your way?
This morning, I am wrapping my arms around my bod. I am going to thank it for all the things it does well.  To remember again, all the complexities it is busy with while I am getting on with life. I’m going to celebrate what it can do and forgive it for what it can’t.  Bravo, body!  You really are remarkable, all the things you do; all the things I get to do because you carry me around.
Thanks bod. I know I complain about you a lot, but I am glad I’ve got you.  Let’s get through this thing…