amber rahim

Chronic illness: the parts we don't talk about


by 4 Comments

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

 

 

 

 

 

 


by 1 Comment

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.


by 5 Comments

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.

 


by Leave a comment

Gratitude: it always has a place in your life

Just when one doctor shakes your faith in the profession, another will remind you why you put your trust in doctors.

In the Great Mickey Change Challenge, we have had a lot of set backs, with each event adding to the trauma.

But on Friday, something different happened. Using a combination of a nose spray and laughing gas, we put F to sleep and the mickey got changed.

I could talk about how her blood pressure dropped so low that we couldn’t wake her for 2 hours.

I could talk about how her heart rate dropped to 50 bpm and we had to place an IV to get her salt up.

I could describe how exhausted and worn out she looked as she stepped into the car.

But today is not that day.

Today is a day of gratitude. I’m grateful that the mickey button finally got changed after 6 months, 4 months after it was due.

I’m grateful that the doctor was kind, thoughtful and treated her like a person.

I’m grateful that they saw her flip from sweet angel to angry terrified monster when she woke and saw the IV in her arm (so now they have seen for themselves why the gas is necessary).

I’m grateful that J took her to this appointment instead of me. After my appointment on Thursday with a really stupid doctor, I couldn’t face it.

But most of all, I am grateful that F has finally had a mickey change experience that was not traumatic, frightening or painful.

I’m not sure how long we will need to keep using the laughing gas and the spray, but knowing a timeline doesn’t actually help. What I do know is this: finally we have found a way to make a very necessary procedure easier for F. We are not adding to the trauma any more, we are gently and ever so slowly, showing her that it doesn’t need to hurt. She doesn’t need to be afraid. Not of this.

Gratitude always has a place in your life


by 1 Comment

Lady gardens and useless doctors: Endometriosis, I’m coming for you

In an attempt to not try and solve all my problems by myself, I went to the gynaecologist today. Warning: contains references to lady gardens and annoying doctors.

It’s always such a weird experience. They ask you to go behind a little curtain to take off your trousers and knickers and then just expect you to walk back into the room with your butt hanging out. Why even have the curtain?

It was only as I was hanging my butt out that I realised that not only do I need to trim the rose bush in my garden (literally. the branches are too long and the kids can’t get to their play house anymore. Yes! I’m talking about a real garden here), but I haven’t been paying attention to my other “gardening” needs. The lawns a mess and my legs are so winter ready that I can plait them.

Well, f it, I’m going to be uncomfortable, we might as well both be uncomfortable.

When I made the appointment I didn’t give any thoughts to maintenance or what “it” looked like (I mean, apart from those who vagazzle, who does?). My primary thought was, will they actually help me?

And after the pokes in the belly and examinations into too many holes, I’m back where I started: I’m going to have to figure this out for myself.

My endometriosis is getting steadily and painfully worse. Still, the only options they gave me are are hormones/contraception or pain killers.

With the severity of my morning sickness with S, I’m not touching hormones and the pain killers are just going to make my IBS worse. And honestly, it’s the IBS that I’m trying to fix.

IBS has many causes and I have successfully dealt with the food related causes. Drastically changing my diet and excluding the WIDE range of foods (thank you Montash University and your fodmap app) meant I was completely symptom free from July to Sep this year. Woohoo! That’s after years of constant symptoms. I never thought it would work. But it did.

But my endometriosis is getting worse and since the summer, the pain has gone up drastically. My IBS symptoms, although a little different, are back.

And my poor gut health lead to my poor mental health. And I’m not going back there. My mind means too much for me to lose it again.

Which is why I was prepared to get poked and prodded today. Because IBS is a symptom of/caused by endometriosis.

So what did this doctor tell me today?

There is no link between endometriosis and IBS.

WTF? Every teenage girl in the world knows there is a link between menstruation and digestion: we feel it every month.

This whole appointment really triggered my

“oh for f*cks sake, I’ll do it myself” reflex.

It’s a really strong trait of mine that I have been learning to let go. And I’m getting pretty good at it. I am a reformed perfectionist after all.

But even as I was muttering to myself

why did I bother?

I realised that the problem wasn’t with asking for help. I just clearly asked the wrong person.

So now I’m on the hunt for someone who does understand the link, that is willing to look past the standard approaches, who’s willing to work with me to find a solution that fits my needs.

So wish me luck. I have no idea where to find them. But my mind is at stake so the quest begins.

docswithoutdiplomas

p.s. perhaps it wasn’t fair to ask him if he’s ever had a period. But if only I could get him into one of those labour simulators… then maybe he’d see living with pain, cramps and IBS a little differently.