amber rahim

Chronic illness: the parts we don't talk about


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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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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.