amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: spoon theory


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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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Control the fun

The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.

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Why 13 hour TV marathons are ok in my house

As much as I agree that television and electronic gadget time should be limited, I find myself turning to that magic box, TV, on a regular basis.  You could say it saved my sanity on more than one occasion.

Take this weekend.  I let F do a 780 minute TV marathon on Sunday.

Why would I do such a thing? Well, have you ever read the “spoon theory“? Christine Miserandino explains the limitations that people with various chronic illnesses live with. It’s really good so if you haven’t read it yet click the link.

It was King’s Day in the Netherlands this weekend and on Friday all schools held the “King’s Games”. It’s a fantastic initiative to celebrate with sport. F loved it. She was really active all day at school and came home wanting to play outside until it was dark. On Saturday she was starting to wilt but was full of enthusiasm for picnics, playing and chinese roasted chicken (who doesn’t love this?) and although it was King’s Day we kept the activities light. But not light enough. It was difficult for us to have to rein in her fun and we didn’t do a very good job of it. Maybe she would be ok. How would we know what her boundaries were if we didn’t let her test them?

This is where the spoon theory comes in. She had used up all her spoons. In F’s case, her spoons are potassium (K) and sodium chloride (NaCl). Unlike the rest of us, her kidney’s don’t hold on to the K and NaCl so when she is active, she depletes the stores in her body, making her weak and nauseous.

She awoke at 3:30am on Sunday, unable to sleep and starting to vomit in a “normal for her when she is coming down with something or has overdone it” way. Despite holding her on my lap and being with her for an hour she couldn’t go back to sleep. I couldn’t stay awake without getting cranky so I told her she could play in bed but that I needed to go to sleep. Wise that she is, she let me go.

The TV marathon started at 8am and was only interrupted by bouts of vomiting and going to the loo.  The magic box did it’s work of distracting and entertaining and by the afternoon she perked up enough to nibble on crisps and raisins.

By 9pm, after hanging out on my bed for awhile (me reading, her still watching telly) I told her to close her eyes and go to sleep. My booked finished, I moved her to her own bed.

Yes there are better ways to distract and entertain even really sick kids but TV works for F.  Big plus: it is easy for me. Yes, yes, yes, I am a mum and I chose “easy” over “best for my child”.

I accept that I have double standards (I would never let S do this) but it came down to this: I was tired and I wanted something that would work.  So I make these choices that in isolation don’t look good. Ok, even in the big picture this one doesn’t look good (13 hours!). But it fulfilled a need – of F to rest, be entertained and be distracted from the nausea and for me to have an easy day. I guess I had used up my spoons too.