amber rahim

Chronic illness: the parts we don't talk about


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


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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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.


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.



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When gluten free rocks #glutenfreeadventures

I’m not going to lie. I do spend too much time thinking that being gluten free sucks, especially when I add in the low FODMAP diet too.

The health benefits are great but man, I miss cheese on toast. And gluten free bread just isn’t bread.

And honey, the manna from heaven, wreaks havoc with my body. White sugar? The evil of our time. Now that I can have.

Makes no sense (said in Eddie Izzard style).

And then I’ll have a day like to today when I hit the jackpot.

raspberries with sweetened condensed milk


This I can have.

Gluten free rocks.

Ps, yes I did eat a bowl, have a foodgasm, then write this post. But what’s a post without a picture? Now I have to eat a second bowl. Oh how I suffer for my art.

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Cookies will not be my downfall

Today the biscuits are tempting me. I’m volunteering at an event and I’m manning the reception desk. Women are embarking on a journey into economic empowerment. It’s wonderful to be a small part of this. Now that they have moved into their first workshop, I’m making myself a cup of tea. I can smell the sweetness of the biscuits. I can feel the crunch, the way the crumbs melt in my mouth….

What a beautiful daydream. My mouth is watering.
This is the first time since starting my #glutenfreeadventure that I’ve been tempted.

Usually, I see bread, cake, biscuits and I see poison. Because for me it is poison. It poisons my mind and sends my body into an IBS nightmare.

But since the beginning of September, my IBS has been back and camping out in my digestive system like French truck drivers on strike.

It’s not a result of me going off my special diet. I haven’t changed anything. But I’ve gone from no IBS symptoms to constant trouble.

The only cause I can think of is my endometriosis. I can feel that getting worse. And it is a known cause of IBS. And it’s incurable.

My two pregnancies etc have taught me that hormone treatment is not an option. I’d be like a bulimic on steroids. I might even vomit more than F used to do.

So I’m feeling royally f***ed.

It’s not a helpful perspective. And I’m struggling to shift out of it.

But those cookies I could smell? That was the nudge I needed. No matter how good they smell, they are poison.

It’s easy when things are going well. It’s when the problems start that you get tested. And I’m being tested. I was drifting. But those cookies may have just saved me. For today at least.

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So close to light soft bread! #Glutenfreeadventures

It’s summer so there have been a lot of barbecues. And I love a homemade burger. I make the patties myself in our scotpak rahim family tradition with some cumin and coriander thrown in.

I’ve never added egg or breadcrumbs for binding so I’m happy that this is something that doesn’t have to change for my gluten free adventure. On the scale I’m somewhere around gluten sensitivity and gluten intolerance.

I have my patties ready. All that’s missing is the soft, light roll to put the burger in.

So I’ve been hunting for weeks and only found “potato bread” or almond flour bread. Last week’s post explains my aversion to the potato in everything gluten free. So what’s wrong with almond?

Well, I also have IBS and am following the low FODMAP diet. Almonds are on my exclusion list too. As are a whole bunch of seemingly unrelated foods including most fruits, some veg and most grains.

So on Wednesday I had another look for gluten free bread. And I found some rolls. Excitement was building as I reached out and picked up the packet. And squeezed.

I was so happy! These were light and soft. And they were part baked so I could finish them off in the oven at home and have warm rolls. Yes!

So with anticipation, and a dose of “don’t get your hopes up” I read the ingredients (in dutch). No potato. Score!

Wait, what’s that I see? Apple fibre. Are you kidding me? I have a very bad reaction to apple and it’s definitely on my list to never eat again in my life.


So it’s time to face facts. I can’t take the easy way out and buy ready made. I need to get busy in the kitchen and make stuff myself.

It’s weird that I was even thinking about buying because I love to bake. I guess when I heard gluten free I just chucked baking into the basement of my mind and locked the door.

Now I’m checking recipes against the FODMAP list to see what to try first. I’ve seen a choc chip cookie recipe with chickpea flour. I can have limited amounts of chickpea, which is good because it will stop me eating the whole batch. One a day will be my limit.

Wish me luck.

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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.