amber rahim

Chronic illness: the parts we don't talk about


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.


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.

 


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.

 

 


Leave a comment

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.


Leave a comment

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.


Leave a comment

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


Leave a comment

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.

cropped-10202851.jpg