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Chronic illness: the parts we don't talk about

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What’s different about chronic illness? No.6: When going out could end up with you in adult diapers

You’ve been busy lately and you’re winding down and settling into some rest and recovery time.

Then something terrible happens: you get an invitation. To a party. With other people, probably also people you don’t know and who don’t know you.

If you are asking “why is this a problem?”, then you have never run out of spoons before.

When you are chronically ill, management of your spoons is important. And so is living a full, happy life. And we want it to be full, don’t we?

So this invitation has come along when you are just out of spoons. You yearn to go, let off steam, have some fun. Your good friend has turned into a devilish temptress telling you

it won’t be the same without you. please come. We’ll all have a fantastic time if you are there

Now, even if they don’t say those exact words, it may feel like this. Because you want to go.

To go or not to go. That is the question.

Do you say no? Disappoint them? disappoint yourself? But take care of yourself because you’re out of spoons and what you really need to do is chill out and rest.

Or do you say yes? And go, enjoy yourself, but in the process get so used up and knackered that you are going to spend a week in bed. Silently wishing for an adult nappy

so that you don’t have to get out of bed to pee…

(No! not in that adult baby fetish way. I was going to add a picture for a laugh but I googled it and it was just too disturbing.)

And if you say yes, you’re going to have to borrow against future spoons, using energy you don’t have yet so that you can stand upright, smile, laugh. But borrowing future spoons is like borrowing money from the mafia.

The interest on your future-spoons loan is going to cripple you.

That simple invitation has turned into a poisoned apple.

Finding Shades of Grey

Now I’ve been living with a cocktail of energy draining, sometimes debilitating illnesses for some years now (IBS, Endo, depression, perfectionism and its burn out consequence) and I’d be a hermit if I hadn’t learned to adjust. And with my eldest daughter having a seriously intensive chronic illness, I couldn’t afford to keep on using up my spoons. I had to make a change.

I have always been a full on, “if you’re going to do something, do it well” kind of person. And although I thought I was lazy, my standards are sky high (that’s why I consider perfectionism an illness).

I was a very black and white thinker. But luckily for me, my eldest taught me how to think in grey.

So now when I get that invitation, there is another dimension to my choice of go/don’t go. I have multiple options:

I can go and be lively, chatty and dare I say funny.

Or I can go and find a comfy chair and chat quietly to one or two people.

I can go for an hour. ok, it always ends up longer but I blame that on my #shopkeepersyndrome (you’re the shop keeper so you can’t leave first, you need to be there for others and need to be the last to leave – when it’s closing time and you have the keys). But I can now leave a party early.

I can stay at home and arrange to see them another time.

I can just say no, no explanations, but I’m sorry that I can’t come.

I can even stay at home and actually rest, go to bed, sleep.

So many shades of grey. So many options.

None of them requiring me to resort to adult nappies because I’m too exhausted to get out of bed.


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Lord help me please. It’s tough being a mum

I promised myself that I would never do this. But I did. I knew it would hurt my child but I did it anyway.

I let two adults hold her down while she was kicking and screaming while another performed a medical procedure. And one of the adults holding her down was me.

But how did we get here? How did we get to this sunny day, full of hope of the lightheartedness of sumer, but doused with an icy blast to my heart like the arctic ocean has crashed down on me?

It’s a long story but I will try to keep it short.

She has developed a fear and trauma about having her mickey button changed. She’s been through EMDR to deal with the trauma. She and her psychologist made a plan to deal with some of the scary things:

  1. Seeing the whole in her body where the mickey sits. I’m not surprised she is scared, it gives me the heebee geebees just thinking about it. So what’s the plan? She gets to watch the mine craft films on youtube that she loves
  2. Seeing all the medical equipment laid out makes it feel like an operation. So we would keep that covered.

Everything was arranged. The psychologist was there. She had picked out her present that she would receive after her new mickey would be replaced.

Then she woke up this morning and it all went to hell. Her first event of fear and anger was pretty bad. So upset she started vomiting. I was taken back to the last time her mickey button exploded and I had to be a tough mama.

How do you get through to your child when she is out of her mind with fear? You can only tell them that you hear them. Over and over until they calm down.

The major event was at the hospital. We had agreed that J and I would not be in the room. F wanted it to just be the psychologist and the nurse. It was time and then she went wild. I can’t even call it a tantrum because it wasn’t. It was so much worse. It was a frightened girl who would do anything to make sure that she could day no.

I wholeheartedly believe that she should be heard and that we should take a “no” from a child seriously. But without her treatment, she would die.

And her treatment isn’t nice. Half the discomfort she feels comes from her medicines. And we can’t afford to have her refuse treatment. Ever.

If I listened to her no today, what would I do when she needs an IV? An IV placement is painful and she has really thin veins so it can take 30 minutes or more to secure one. 30 minutes os someone poking a needle in her. What if she says no then?

And her IVs always need to have potassium. That burns. What if she refuses that? Her potassium levels can drop so quickly that she could have a heart attack. It may seem far fetched but sadly we lost someone in the Bartters & Gitelmans community this way about a month ago.

With her condition, when she needs an IV, it means that she is seriously ill and needs it right away. Not when she has calmed down. Not later. No time for discussion. Now.

If I listen to her “no” now, it opens the door to her saying no more often. And we can’t do this. I can’t do this fighting every time.

I can’t let her say no. It’s either take the treatment or get life threateningly ill really quickly. And then give her the treatment when she becomes unconscious. And providing it’s not too late, maybe her kidneys won’t get damaged. Maybe she won’t die.

So that’s how I came to be holding her down on the hospital bed. Her arms being held by me, her legs by another nurse. And a third nurse changing her mickey button.

Her father carried her to her next appointment (it never stops with a chronically ill child). We bought something for her to eat along the way. She smiled eventually.

We will follow up with the psychologist later. She had never seen anything like this in her entire career. The strength of resistance. But we will regroup and look at how we can support F so that it isn’t so traumatic next time.

But I feel like crap. I want to eat bread. Even though I’m on a 3 week gluten free diet I want to scoff bread there’s a wheat famine approaching. But, given the very real medical reasons behind my gluten free diet, that would be like bashing my head with a sledgehammer.

So why did I do it? Why did I choose to be the one in the room with her? I know that J would have done it. But I just knew that I could get her to relax her stomach muscles. You see, she can scream, kick and relax her muscles at the same time. I don’t know how she does it, but she can. You see, it’s impossible to put a mickey into the whole in the stomach if your muscles are tense. We know, that’s one of the chapters of this story.

And she did listen. Even through the screaming. Even through the kicking. She listened and relaxed her abdomen for the change.

I just hope that she really heard me when I said

“I didn’t want to hurt you. But you need this medicine. Your illness sucks and I wish I wold change it but I can’t.”

Oh man, today it sucks to be a mum. Lord, help me please.

 


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How I realised that “Because I said so” is a life skill

Back in May I wrote a story and shared it with about a dozen people at a Storytelling Night. It’s longer than my normal posts so I kept telling myself that this isn’t the place to share it. Well, I want to share it anyway. If you’ve got a few minutes, read on.

How I realized that “Because I said so” is a life skill

When I saw the post on Facebook about this event I loved it and my first thought was “I’m going to go! As a spectator”. A few seconds later this thought followed “go and read” and before I knew it, I was signing up on eventbrite. There was no reason or explanation. I have never done this before. Just a voice in my head saying: “do it”.

Then I saw the theme. Because I said so. I write about living with chronic illness. I write about self development and how you can get yourself unstuck. What’s that got to do with Because I said so?

I spent the next 2 weeks being completely blank. What story can I tell? And yes, the rules aren’t rigid or strict and I could write about whatever I wanted but….. there is something inside of me that always tries to do what I have been asked.

My default association with this phrase is that is negative. How many times have I yelled this at my kids?

Yes, I patiently explain the logic behind my instructions or involve my kids in the thinking process in how to come up with a conclusive course of action. I want them to be independent, self-sufficient. Leaders, at least of themselves.

Not sheep. Not blind followers of others. Because I want them to choose their lives. And a tiny, terrified part of me that has watched too many episodes of Criminal Minds and that doesn’t watch the news anymore because of all the terrible things that happen, wants them to fight like mad if anyone tries to grab them or do things to them.

I want fighters.

Ok, here’s a confession. I don’t always do that patiently. The explanation. Sometimes I’m having a bad day or they are behaving little brats and pushing all my buttons and the conversation is more like this:

“Put your nickers on.

Come on, move it! How many times do we have to have this conversation?

Stop prancing about and put your bloody nickers on! Now!”

I kind of understand the running around completely naked thing but putting your vest and t-shirt on, even your socks and yet your butt is still bare? What the hell is that?

I have often thought of this tactic, because I said so, as being the last resort of a tired parent. Probably because I only use it when I am tired.

So while I was thinking about what on earth I was doing, signing up for this, I realized something. I had no reason, no explanation. I just listened to a voice in my head that said just do it.

That started me thinking: where else in my life do I do things, just because someone else has said so?

When I was a teenager my mum used to tell me to just get up and dressed by 8am on a Saturday, even if I was going to read in bed all day. Just get up and get dressed first. I never understood it (and fought it a lot) but I get it now. Sorry mum.

It happened at work too. Stopping that project half way through because someone at the top didn’t like it. There was always a lot of blah blah blah around it: “new direction”, “maximize synergies” etc but it always came down to someone new at the top saying no.

And at home. My husband telling me to eat. In my pregnancy with S, I was really sick. At 4 weeks, the vomiting started and didn’t really stop until about a week before she was born.

Within the first trimester I was admitted into hospital 4 times due to dehydration and lack of nutrition. And a kidney stone. I was extremely nauseous and on bed rest. I didn’t feel hunger and didn’t want to eat so I didn’t. So my husband made me snacks and I ate them when he told me to. If he left the food with me, then more often than not, I would stop eating after a couple of bites. So he started staying and I ate. Because he said so.

Then one day he looked at me and told me he was taking me to the hospital. Okay I said. We didn’t have an appointment but he said he was worried so we went.

You see I was vomiting so much that I was on antiemetics. There is one that is safe to use during pregnancy. However a possible side effect is depression and I had sunk so deeply, so quickly. I knew that if I didn’t eat more I could die and I didn’t care. My apathy was complete and I had no desire to change anything. I wasn’t eating, it was dangerous and it was ok.

When he looked at me he saw that in my eyes and he didn’t like it. He told me to put my shoes on and I followed.

They admitted me. I talked to a shrink. I chose to stop taking the medicine and within a couple of days the fog had lifted. The world, which had become hazy, had sharp edges again.

I was still extremely nauseous, but I was ok.

For me there is a power in these words “because I said so”. In that moment, it was the power of protection: you are hurting yourself and I am telling you to stop. No debate. No time wasting. Just stop.

There is also the power of liberation. Take the birth of S. The doctor told me when to push and not push. I was induced and it took quickly. Within an hour I was having contractions less than a minute apart and I was puffing like Thomas the tank engine on speed, trying so hard not to push. I didn’t have time to think and I didn’t know what to do. My first, F, was born via cesarean so I hadn’t done this before.

So I did as I was told: “don’t push, don’t push, don’t push. Ok push”.

I didn’t need to figure it out or make decisions. I could let go of all responsibility and just focus on doing puffing and pushing. What a relief.

I have changed my view on “because I said so” and I have found these 3 things to be true:

ONE

There are times in your life when you just have to listen to someone else. We do not always get to choose: like all those projects that got cancelled. We need to accept and with acceptance, frustration disappears. This is important for the happiness of our children. It’s a skill that they need to learn.

TWO

It is liberation and an act of kindness. How many of you been stumped by this deeply philosophical question: what should we have for dinner today? Some nights, it kills me.

“What? I need to decide everything? Just tell me what you want and I will make it.”

Sometimes we need to be free of the responsibility of making decisions and just have someone else do it.

So it is an act of kindness to my children when I tell them:

“We’re eating spaghetti for dinner today. No discussion”. Or “Time for bed”.

THREE

It is the last resort of a tired parent. Maybe there are times that I need to start the conversation that way.

Because I said so is a life skill.


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5 tips for the caregiving husband. #heforshe

My sister and I were reminiscing the other day about things that happened in our childhood and as she talked I realised that I hadn’t thought about these events – big events – for years. I had never thought “what was that like for everyone else?” I started to see them a new light and it made me wonder what our history with Bartters and chronic illness was like for my husband, J.

The mystery of : what was wrong with our child? The emergency caesarean. All the hospital drama (our very own Greys, but without any of the hook ups). The years of intensive care and so many near misses.

I know what it was like for me.

But dear J, what was it like for you?

What is it like for a man when he finds out that his wife might lose her baby? His baby?

What’s it like to see the business end of a cesarean; cuts through seven layers of her body, edges pinned back while they put their hands in to pick up your little baby saying “grab the other leg”?

What’s it like to leave your wife on her own, barely able to walk to the hospital to visit F, because you need to go back to work? (just to clarify, I wasn’t walking all the way from home, that would be heartless! I was at the Ronald McDonald house next to the hospital).

I do not know what that is like, I can only imagine. I do know this: when you are sick or it is you that has had the baby, everyone knows what is wrong, they know they need to express sympathy of some kind. They do not expect you to come to work.

But the husband? They expect him to come in, be focussed, do their job. Carry on as normal.

Because while they understand the terrible situation you are in and have sympathy, there is still a job to be done.  They give you a day or two of leave and that is supposed to be enough. You might use some of your vacation days too but there is only so much extra leave that you can take before employers start to feel that they cannot rely on you.

So, husband with the wife who needs you and the child who is fighting for her life, what do you do?

You can’t do everything and someone is always going to be disappointed. Rock and a hard place, that’s where you are my friend.

Here are some suggestions, from a woman who has been on the other side, noticing what you have to deal with.

  1. Accept: you can’t do everything. And that’s ok.
  2. Breathe. Deeply. You get cranky and uptight when you do that shallow, upper chest only breathing. If your belly is expanding when you inhale, you are breathing well.
  3. Sleep: take naps. Lack of sleep really compromises your decision making abilities. It just messes up your thinking. I know you are trying to get those extra things done but just tell me you need to sleep and I will make sure you don’t get disturbed.
  4. Choose: don’t do it all. Let some things go. Choose what feels right for you. Make choices you can live with. We (the wives) may not always agree or understand your choices but you can escape us, at least for a while. You can’t escape yourself.
  5. Talk. Man, I don’t know how to stress this enough. Talk to your boss. Talk to us. And when talking to your wife: use simple language (especially at the beginning). We may look calm and rational on the outside but inside we are freaking out. We have no idea what we are doing and are scared. So don’t ask us to figure out what you mean, be obvious and clear. But don’t patronise us because then we will bite your head off. (Ah, there you go back to that rock and hard place)

 

Finally, why do I have the #HeForShe tag on this? Well, this post is also about feminism – the equality for both men and women. When we talk about babies and their illnesses, most of our thoughts go to the mothers and how they deal with it, what support they have. But what about the men? What support do they have? I hope this post highlights that we need to think about them too.

Breathe


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The lessons we learn from our children

I saw this on Facebook and wanted to spread the message as it means a lot to me. It’s a cause I have taken up, to create a world where we SEE and are SEEN.

It has also helped me get through something that happened today and I have learned again the value of being seen.

(warning: yes I really did use the word poo 3 times in this blog. well, 4 if we count this warning).

I see you

There is a light sense of irony that while this is my mission with my children and in my work, I have spent the last week feeling unheard, not listened to. Inaudible in place of invisible.

The main culprit is my cheeky minx, little S, but to be honest the whole household has contributed. A huge amount of frustration has been building and was released this afternoon when little S felt unable to wait two minutes for me to get to her and decided to explore her own poo.

Yes, it was as disgusting as you think it would be.

After dumping her in the shower and impressing upon her the wrongness of what she had done I forced myself to stop talking. My tongue was running away with me and I had visions of her in therapy in years to come working through the traumatic “poo incident” where she realised she was naughty.

Man, oh man, yes what she did was naughty but she is not naughty. She is curious, smart and tough (come on, “you make me wait so I’m going to play with poo” talk about playing hardball!). I just don’t think she expected me to flip the way I did.

All cleaned up, I put her back to bed for her nap and gave myself a time out with the Colbert Report (always makes me laugh).

At the end of my time out, nap time was over. Little S told me she loved me and gave me a huge hug. We debriefed the incident and agreed some rules.

She has seen me today, in the many shades that I come in:

in the terrible beauty that is my anger, a sight to behold; forceful, scary, loud

my compassion kicking in to make me stop talking and avoid saying anything more that could harm

my sense of protection, for her and myself, to put myself in timeout.

She has seen me and she loves me anyway.

Though I may not feel heard right now, I am seen and it is transformational: until now I did not see the compassion or the protection, only the anger.

I also see that I am a bit tense, lacking in patience.

No wonder she has been tuning me out. Time to pick a new voice.

 


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Make the ordinary come alive

I know, comparing yourself or your life to others is the first step on the road to dissatisfaction and frustration yet sometimes I do compare. Or notice the differences.

Perhaps I am just fooling myself, but “noticing the differences” feels better, more innocent, even a touch scientific. There’s a clinical detachment with “noticing”.

Ok, I’m getting distracted. What have I been noticing?

It’s the school holidays and as usual we don’t have a lot planned. While there is an underlying spirit of freedom, going with the flow, living spontaneously, there is a seed of doubt: are we just too tired to put some effort into it? It’s hard enough figuring out what we are going to have for dinner let alone plan exciting adventures that all the kids will love.

Try to find something that a 13 year old boy, a 6 year old girl and a 2 year old toddler will all like and can do at the same place. And that doesn’t cost a fortune. (Leave tips in the comments)

But when you have swings, climbing frame and a football… Everyone is happy. So although there are so many amazing things we could be doing while on holiday, most of the time we are playing in the garden.

While I was noticing how our activities are always super simple and wondering if I was shortchanging my kids, a dear friend of mine sent me this (and saved me):

image

I don’t know who wrote this but I like it. I love it. It is at the heart of me and everything I believe about life. Sometimes I forget but when you appreciate and value what you already have, life is extraordinary.