amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: rare diseases


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The balancing act of chronic illness

So if you’ve been following my blog you know that I am the queen of “give it time” and “fight for help”.

Waiting for your child’s health to become stable, for them to start eating, to stop vomiting…. it takes a multidimensional approach and time.

And sometimes, you just need to get in the doctors face and say “enough”. Now you need to listen to me and do something about the vomiting, not eating, etc.

It’s a balancing act and it requires a lot of strength, patience, and fortitude.

Well, it turns out that I’m pretty good at doing that for my daughter, but not so good for myself.

My endometriosis, IBS, and depression got really bad a couple of years ago and I took action. I tackled the IBS which helped the depression (did you know that there is a link between inflammation and depression? Well that’s were my depression was coming from and I changed my diet to reduce inflammation en voila, I felt physically and mentally better).

The diet change for the IBS has also alleviated some of my endometriosis pain. It’s brought it back from constant and excruciating, to just pain most of the time and manageable (manageable for someone whose just so glad not to be in pain everyday).

Which means that for the gynaecologist I saw in Jan, I am no long “sick enough” for them to offer anything other than pain ills and contraception.

Nice. I’m contraindicated for both. Thanks Mr and Mrs Specialist. How is that I understand my illness and medical records better than you?

So I’m currently caught in this other type of balancing act:

  1. If you help yourself, you are no longer sick enough for the doctors to help you

  2. If you don’t help yourself in every way you can, then you are in a lot of pain

How do I find that sweet spot between

being seen as ill enough for the doctors to actually do something

and

not being in excruciating pain?

LIE. Just lie about it.

That’s another balancing act for people with chronic illness:

Truth versus Honesty

So at my next appointment I’m going to describe how it used to be. Pretend that I still have it. Because endometriosis is a progressive illness, and it creates inflammation in the body.

The truth is, I need help. But honestly, it’s not as bad as it was.

But as I wait, I can feel it getting worse. Both the physical pain and my mental state.

And do you know the worst thing about depression? It robs you of your will to do something to help yourself.

Actually, this is the worst thing: you start to feel worse. You are also quickly losing the capacity to take action and help yourself. You feel the darkness coming and you do nothing.

Well, I’m not doing “nothing”. For starters, I’m writing about it. Writing really helps me to get clear about what’s going on in my head, in my body, in my soul. It’s a way for me to figure out what to do next. So now I know. Lie my pants of and make the doctors help me.

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Difficulty eating, not picky eater.

“Oh, they’re a picky eater? Well, you’ve just got to be strict with them”

“Don’t spoil them”

“Let them go hungry. They will soon give in”

“When they see other kids eat, they’ll eat”

Some of the wonderful and pointless advice I have received over the years. And if you have a child who has difficulty with eating, then you’ll understand me when I say that there are two camps on the topic of kids and eating.

Camp 1

My kid had no problems and I think that’s because I’m a good parent. Do what I did and you won’t have a problem.

Or

My kid eats but I want them to eat more healthily. They ate the carrots yesterday but today they threw them on the floor. Oh my god, my kid has an eating problem!

We talk about this a lot and give advice to others whenever we can.

Camp 2

It’s nuts. Eating is something that all animals do naturally, without event thinking about it. But my kid has real issues with food and the process of eating. So how the heck do you teach an activity that is instinctive? Yeah, that’s what we are trying to figure out.

We get advice all the time but rarely get listened too.

And ok, there is a third camp. A camp of people who feed their kids, their kids eat, mostly, and they don’t worry about it too much. But they also tend to just get on with it and don’t give meaningless advice to others.

I’ve been in Camp 2 for the last 8 years. It’s been a long road. It’s tested my patience. I’ve questioned my parenting hundreds of times. I’ve let the whole thing go (my daughter had a feeding tube so what the heck) and I’ve worked at it like a demon. I wrote my side of the story on how to actually help your kids to eat in this post 8 ways to get your kids to eat

And in 3 words? Give It Time.

But today’s post is a celebration. A milestone has been achieved in our household.

F, my daughter with the incurable kidney disorder, the one who drank Maggi flavour enhancer, neat(!), for about 4 years, the one who didn’t eat more than crumb size bites until she was 5, the one who projectile vomited at the touch of a banana, the one who had to learn how to move food to the back of her throat so she could swallow it, well she ate a baked potato. With tuna mayonnaise. And a little bit of salt and butter.

A complete meal.

Not bits and bobs. Not a collection of random food stuffs. Not just a single item like tuna or a plain tortilla wrap dipped in ketchup (yes, that really was an acceptable meal for her for a long time).

A complete meal.

AND

She took a complete, normal sized bite. You know, the amount of food you can get on a teaspoon and that any other kid of 8 would eat. You know, where the food actually fills your mouth completely.

AND

She didn’t vomit or gag.

She just ate it. Said it was delicious. Then took another bite. And another bite. And another. Until it was finished.

I cried. I held my tears inside because, well, she would just think her mum was a freak. Can you imagine taking a bite of a baked potato and seeing your mum cry because of it? She’d call a doctor.

But inside I cried with joy.

She ate! a complete! meal!

I want to add exclamation marks everywhere because all the words are so exciting and so important!!!!!!!!!!!!

And you know what else? She loves spicy tuna maki. And eats the whole thing. Not just picking a few grains of rice out and drowning them in soy sauce (because really, that’s how she used to eat them). SHE EATS THE WHOLE THING

I know there are so many other battles still to face. So many other things she needs to learn how to do to look after herself, and I’m not even talking about her medical routine. But she can eat. She can finally do that one thing that so many of us take for granted. She can eat.

Woohoo!

For all of you who are facing this challenge, a child with difficulty eating, I just want to say:

Hang in there. You’re patience is just perfect. You’re impatience is natural and sometimes will give you the push your child needs to be challenged. And take time to celebrate the milestones. Because there are many along the way. The first bite. The first time the food stayed in. The first time they say “can I try that?” Enjoy them all.

Who would have thought that baked potato with tuna mayonnaise would make me cry with joy?

tuna

 

 

 

 

 

 


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Why being cured isn’t always the happy occasion you expect #Mondayblogs

This blog is all about living with chronic illness but what happens when you get better? It should be party time right? Life is wonderful. This is what we have been praying for. It’s celebration time, come on! (cue Kool and the Gang).

Yet, it’s not all party and celebration. You actually land in a world of mixed feelings. You’ve lived with this for so long, and now it’s gone. A big part of your life has disappeared and it’s replaced with emptiness.

It’s not a sad emptiness though. It’s kind of exciting. It’s a

Oh my god, what can I do with all this extra energy?

kind of thing.

And with that excitement comes some fear. You see, there is comfort in the known. Better the devil you know and all that. In this emptiness, anything is possible. So that means it could be both good and bad. And it probably will be both good and bad.

There are two common thoughts that run through our heads and I experienced them both last year.

  1. Is this really over?
  2. Oh my god, it’s over. What now?

1. Is this really over?

in 2014 I started an exclusion diet for my IBS. I was in pain everyday and the inflammation was making me depressed. As in, need medication because I don’t care to live, depressed. Cutting out foods from the high FODMAP list really helped. And by June 2015 I was symptom free. It was an amazing feeling, to be pain free! I was in an almost constant state of bewildered surprise, thinking

So this is what it feels like to be normal?

Until September. When my endometriosis hit a tipping point and triggered my symptoms again. So I’m actually now back to daily pain. I’m still excluding the high FODMAP foods (otherwise it would be excruciating). The pain is also different. I can feel that it’s coming from the endo; its a very specific kind of pain.

So, it’s not really over. Not this pain. And while I really enjoyed those pain free summer months, I still feel a little bit knocked down that all my work didn’t lead to a cure. But I’m picking myself back up. It’s a slow process; the drop from my euphoria was quite high.

2. Oh my god it’s over, what now?

In October last year I came of my depression meds. I was on them for 1 year. Although I hated the being on them, the hate was aimed at the necessity and the side effects. My mood was stabilised but it was stabilised at a constant, low level grump. I had a small frown on my face all the time.

And I was constantly hungry. I wanted (and did) eat all the time.

My main therapy was my exclusion diet and it worked. IT WORKED! I’m still so excited about it that I needed to shout that. Certain foods that were causing inflammation in my gut (hence the IBS) were also affecting my brain and mood. I can guarantee now that if I eat gluten, I will become miserable (I just did a gluten test with spelt at the new year and ended up feeling like my life was pointless).

So in October I came off my meds. I was so excited about doing this, and yet there was a whisper of concern. Subconsciously I was thinking

I’m never going to feel sad again. I can’t feel sad again because now I’m cured.

It doesn’t make sense but this is what was going through my head.

If I don’t need the tablets anymore, then I must be happy.

Which is true, but there was a hidden “Always” in there. That I must be happy, always.

Now that I had finally reached this stage, I am no longer depressed, it was scary.

So what am I now? My depression didn’t define me, but it also took up a huge amount of my energy, time and attention. Now that it’s gone, it’s left a big hole. This leaves me with the big philosophical question of

What is my life all about? What’s next?

So yes, I know and have accepted that I will feel sad, blue, down in the dumps. It’s normal. It’s the blackness, the heaviness, the apathy that has gone.

So now I’m enjoying the absence of apathy and blackness. I’m having a look around at the colours. I’m trying to figure out what to do with all this extra energy I have.

I must confess, this last week I wasted a lot of it. I’ve been so used to struggling that I became a little lost. And the irony? I struggled because the struggle was gone.

So if you know someone who has just had good news about their health, please don’t be surprised that they are not celebrating.

They are wondering if it will last.

They are coming to grips with the vacuum.

Don’t expect them to be over the moon. Don’t expect tears of joy. It will come. Give them time.

 


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

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p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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What’s different about chronic illness No. 4: the risks are high

I write about both the good and the bad that comes with living with chronic illness. Today is unfortunately about the bad.

On Monday we found out that a boy in F’s class at school, whose initial is I, died last week. His illness had taken over and there was nothing more they could do. His parents and the teachers knew it was only a matter of time until it took him. And it took him last week.

F cried and remembered J, another boy from her school who died last year. When she got home she told us she felt wobbly inside thinking about them, thinking that she didn’t want this to happen to her.

I wish I could tell her that it won’t but as I write, the daughter of a friend, who has the same illness as F, is losing kidney function by the week and is almost in stage 4 kidney failure.

Did you know that you can’t tell if your kidneys are failing, unless you test for it? Well, that is until it gets really critical.

This is why we need check ups so often. This is why we need to take her to the hospital if she gets stomach flu and vomits for more than a day.

This risk is always there.

It’s as far away as the sun, and closer than her shadow, all at the same time.

That’s what is different about chronic illness.

 

In memory of I, a sweet soul. Prayers and all our love and compassion to you and your family.

 


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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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