amber rahim

Chronic illness: the parts we don't talk about


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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.

Pants.

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.

potatoes

 


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Happy Mandalas and broken hands

I love colouring. I always joined in when F was little and probably did more colouring than she did. I definitely do more than S.

Recenty my sister in law bought me a Mandala colouring book and I’m hooked. I have thin pens and thick pens and have reserved a couple of pages for the girls to colour (because of course if I am colouring, they want to).

i love using the thin pens the most. It takes more concentration and the colours just seem to be more sharp, jewel like.

its very soothing and this daily practice has been like a kind of meditation for me: it builds my reserves of resilience.

But today as I colour I feel restless. Some words need to be spoken. Yet I feel that my life while be forever changed and I’m not sure I am ready for that. But I don’t the know how much longer I can hold them in.

But these words I can say: we took S to the hospital today. She fell and hurt her hand. No amounts of bruises and scrapes stop her, and she reminds me of my sister Y, fearless and ever on an adventure. But today she cried so. She fell asleep in my arms and on waking, cried some more.

It was a quick visit and it looks like she bruised it. No broken bones they said. Let’s hope that’s true.

I caught myself comparing this visit to all our other visits with F. Those visits are always so complex but today I don’t want to compare. I am going to try and enjoy that whole process took under an hour, including the 20 min drive each way.

It was a breeze. So thank you God for the ease and speed today.


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Maybe I don’t get to keep this life

So just recently, I made my friend, who just finished her chemo for great cancer, cry.

And for good measure, I made myself cry too.

You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.

She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).

She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.

Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).

A cancer diagnosis brings death back into the picture and we realise

Maybe I don’t get to keep this life that I have.

As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this

we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday

Enjoy it!

Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.


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39 words for 39 years

Once a year I make a deliberate effort to create something that is more poetry than prose. Why? To challenge myself to do something different. And because I can.

My aim? To mark my birthday by saying something about myself in exactly the number of words that represent my age. Unlike last years creation, the title is not included in the word count this year.

 39 words for 39 years

Post baby body, the changes, the scars,

finally accepted.

Self consciousness dissolving along with my youth,

liberated.

Committed to my family yet choosing for myself,

guilt free.

Clarity of the soul blossoms though I become fuzzy around the edges

 

I think this picture sums up my approach to life right now.

for-web-Big-Things-First


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Sometimes we want to be afraid

Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).

On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).

Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)

It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.

She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).

Bedtime: the obstacle of skinny jeans

“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?

She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.

“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.

“No!” she cried. And cried. “I’m scared!”

I tried to calm her down:

“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.

You don’t have to be afraid. Do you know that you can choose to be afraid or not?”

She said “Yes”. (So she does listen to what I say to her).

“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself

“Yes, I want to be afraid” she replied.

So I let her. I put my arms around her and let her be afraid.

She cried some more. Then she started talking, laughing.

She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.

It hurt a little.

I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.

This experience taught me a couple of things:

  1. Just how amazing she is. I know it, but now I see her even more deeply.
  2. We don’t need to make our children happy all the time.

Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.

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Come on in, my old friend Self Doubt. Come on in.

Inspired by a session with my coach on how we can shift out of (negative) emotional fields. We all have these thoughts of self doubt, that we are doing it wrong. But we don’t need to stay there. We can invite the feeling in, get to know it and then send it on its way.

Come on in, my old friend Self Doubt. Come on in.

You’ve been knocking on my door for so long. Whispering, and in turn shouting, through the letter box.

No matter how tightly I hold my hands against my ears or how loud I set the telly, I can still hear you.

So come on in. Have a seat. Get warm. Have some tea. Take two biscuits, not just one. Yes we are in the Netherlands but we are flouting the rules anyway by being together like this. Take the whole tin.

So what is that you want to tell me? What must I know?

Yes, I am a terrible mother.

Yes, I am emotionally scarring my children and they will never recover.

Yes, I am not doing all the things I set out to do.

Self Doubt, you keep telling me this as if I don’t know. What is your urgency? Are you trying to keep me away from joy? Are you trying to keep me small, afraid and guilt-ridden?

Well, it’s been working my friend.

But now that I have invited you in I can see you clearly.

You are small and frail. Brittle. Be careful with that tea, it may melt you, turn you into a puddle of ash.

Yes, now that I have invited you in I can see that you are small, not me. You are guilt-ridden, afraid, urgent. Not me.

You look tired. All this banging on doors and shouting through the letter box has tired you out. The anxiety is wasting you away. So let me send you to a wonderful place. A place in the sun, where you can relax. You do not need to speak for there is no one to hear you there.

Go. With my blessing and good wishes, go my old friend Self Doubt. It is time for us to part ways. We do not belong together.

I belong with Self Believe for I am interesting. I am quirky. I am dance.

I am a good mother.

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