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Chronic illness: the parts we don't talk about

Category Archives: care giver burn out


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The little white lies

On Tuesday I was talking to someone and mentioned I was at the hospital. People always get alarmed so I usually say “it’s just routine stuff”.

Because it’s not an emergency. These are planned visits.

But this was my “routine stuff” visit yesterday:

after months of therapy and hypnosis, take my 8 year old to have a procedure that she is absolutely terrified of.

That’s my routine.

It was difficult a day and here’s what I wrote.

But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.

So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.

So we’re going to see if we can do this with laughing gas, to put her under.

The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.

Putting aside my feelings, I was really clear to hear:

it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.

But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time travel and this is what she wants to do with it.

So creative.

So scared.

And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.

Here’s another white lie I tell:

I’m just doing what any parent would do

I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.

Here’s a final white lie

that unconditional love comes from our children

That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.

We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.


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Lamb to the slaughter and other dramatics

Lamb to the slaughter. No matter how much I reason with myself, this is the feeling that I have.

F is the lamb and getting her mickey button changed is the big sharp knife.

its been 4 months since the last change. That awful day when 2 adults, me included, pinned her down while a 3rd pulled out the old mickey and put in a new one.

4 months since she stopped talking to me for 2 days.

We’ve done a lot to help her since then. We needed to. Her fear and anxiety are so high that  I can spook her just by walking into her room.

So she’s been learning self hypnosis: designing her own happy place that she can go to when needed. When she needs to be calm enough to have her mickey changed

And she’s loved working with her therapist  loves doing the exercises. Even when we forget, she remembers and insists on doing them. What a star.

so she is prepared. We’ve done everything we can.

But on the way in to the hospital she says quietly

“I wish I was someone else”

So I know. For both us this journey is like going to the slaughter house.

I can hear the shouting from here.

its a good job I don’t eat cookies anymore; I’d be the size of a house.


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Gluten free: what’s with all the potato?

Am I jumping on a fad? No. And I’d be really late to the party if I was.

But let me give some context.

Since the age of about 14, I’ve had monthly episodes of IBS. Relatively mild and manageable. Well, ok, it was disruptive and painful but I put up with it.

It was manageable until I had my eldest, F. During my emergency c section I got a lovely bonus gift of endometriosis. Of which a side effect and symptom is IBS. So my IBS spiralled and grew and got so bad that I had pain and discomfort everyday, all day.

And like any health conscious, aware, parent of a sick kid, I went and got it checked out straight away. As soon as it became unbearable. Not a moment later.

But there isn’t a cure for IBS. And whatever the original cause, the best way to help reduce symptoms is to change your diet. So I took on board my doctors advice to eat crudites (yes, that is really all he said). I started googling IBS and even joined and IBS support group. Wow! those people really suffer! Their stories scared me away.

I knew I needed to make a big change and I needed the head space for it too.

So as a health conscious, aware, parent of a sick kid, about 2 years later I got there. I needed to eliminate foods from my diet.

So last October I started the FODMAP diet. My understanding of it is this: basically you are avoiding foods with excess dietary sugars that can ferment in the gut and cause bloating, cramps, a spastic colon, inflammation …….

It took me a long time to get my head around it: give up certain foods, possibly for life. For the sake of my health.

It should have been a no brainer. Don’t eat that, feel good.

It seems like a small change but it’s massive. It affects the whole family, how we do the shopping, how many meals I need to cook each day. And I’m not even going to mention going out to eat.

And I can’t remember all the foods I should avoid so I use this app. But that’s for another post.

This post is about gluten free food and the surprising amount of potato.

Wheat is a big NO NO for IBS. So I had cut that out. And I found an alternative, Spelt. It’s a relative of wheat and hasn’t been genetically modified the way wheat has been.

I was eating limited amounts of spelt bread and doing ok with it.

100% spelt. Check the ingredients people! Marketing people lie. “look! buy this spelt bread, it’s so healthy!” they say and then on the back you see “made with 50% wheat, 10% spelt flour…”

But my nutritionist asked me to go gluten free for 3 weeks. Why? Because although I may not notice any problems with spelt, the gluten in it could still be doing damage to my irritated and inflamed gut.

So I did it. And I felt great. Really good. A real uplift in my mental health too.

Then I had some wheat and spelt. And it hurt. A lot.

And that just sucks.

So, I decided to check out the gluten free offerings. I love rice, LOVE IT. But sometimes you just want some toast. I was missing “bread” type foods.

And that’s when I found the potato conspiracy. It’s in EVERYTHING.

Those crackers look so good. A mix of potato, rice and a million other things. It looks good. But don’t be fooled. They are solid stodge. Heavy and with this really weird texture that makes me think of potato dust.

Potato dust

When I was a kid I worked in my parents corner shop and bagged potatoes. Took potatoes from a massive sack and bagged them up into 5lb bags. I loved that task but my nose would fill with that potato smell of good potatoes with a coating of mud – they stay fresher for longer that way.

But I don’t want to eat potato dust.

And the bread. Oh it looked so promising. And although it felt dense, I didn’t mind. I like slightly dense bread. It’s like you can feel the wholesomeness of it. All those whole grains.

So I toasted some gluten free potato bread. Spread my salted butter (oh Clover, I miss you. Did you know that in Holland everyone uses unsalted? yuck)

And…. potato dust. Heavy. No crunch.

The texture is just awful. It’s a bait and switch. It’s like they put all the effort into making it look right and forgot all about the taste and texture.

So I’ll just have to content myself with rice crackers and give my gut time to heal. I know this is going to take months, possibly more than a year. And then maybe I’ll be able to have spelt.

So for all those coeliacs out there, like my sister S and fellow blogger C, I’m starting to get what life is like for you. Gluten is everywhere. Like those damn potatoes.

potatoes

 


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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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I love you, but I don’t always like you

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Parenting is supposed to provide unconditional love: you for your children and from your children to you. And it does.

That’s a parenting truth.

Here’s another parenting truth: your kids won’t like you all the time.

They go through stages where they prefer daddy over mummy, and sometimes, mummy over daddy.

Then they hit puberty and don’t like either of you.

I can see you nodding, Can I get an Amen?

What people don’t talk about is how sometimes you, wonderful parent that you are, don’t like your kids.

So I’ll fess up here and tell you my truth:

Sometimes I don’t like my kids

In fact this last week I have seriously disliked my kids.

  1. Is it because they don’t listen at bedtime and are messing about the whole time?
  2. Is it because they are testing the limits on food requests? Taking advantage of their eating issues to just pick their favourite food?
  3. Is it because I haven’t had enough me time to recharge my batteries?

Yes. Yes to all of them. But mostly it’s No.2

F does have quite major issues with food and it’s still really hard to have food available for her that she will actually eat. I’ve written about it many times and our patience and encouragement is working and she is eating more and more. Did I mention that she ate roasted butternut squash? Voluntarily. And she keeps asking for it. Isn’t that fantastic?

Yes!

Except for when it isn’t. Except for when she can’t face it anymore.

You see, with her condition, her electrolytes can go all over the place, she ends up feeling nauseous and then it becomes hard for her to eat. Her appetite disappears. Food smells and tastes funny to her.

So you never know when she is going to stop eating. Because of her condition.

And then she’s a kid. All kids do their utmost to create the most perfect life for themselves (go kids!).

  • They want to wear their favourite clothes all the time.
  • They only want to eat their favourite food.
  • They want to watch their favourite tv programs.

So, is the sudden difficulty with eating a result of her condition or has she decided she doesn’t fancy it anymore?

Well, I don’t know either. But my gut tells me that she has been playing me lately. Playing me. And I don’t like it.

I got frustrated. It showed. So I told her my suspicion. I asked her outright:

Are you only eating things that you absolutely love and fancy eating?

Yes, she replied.

Mo’fo’!

I’m going nuts trying to feed her. And S? She doesn’t have these issues but she’s a smart girl. She sees the pattern and copies it, uses it to her advantage.

So we had a talk about it. We have called a truce.

But here’s another truth:

The dislike is temporary. The love is permanent.

p.s. her growth has stagnated and her neph says she needs to gain weight. Hmm, I wonder how much this has got to do with my tension? Probably more than it should.

 

This story was also published on Youshare so follow the link and like it there please.


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Oh, so that’s what I did last year. #fireworks #WordPressDotCom. My 2014 annual report.

I always think I’m not writing enough and then I got this from wordpress.  It’s good to look back at what you have achieved. not just forward to what still needs to be done.

So actually, thanks wordpress. This is one compilation of 2014 that I actually like.

See the #fireworks I created by blogging on #WordPressDotCom. My 2014 annual report..