amber rahim

Chronic illness: the parts we don't talk about


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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.

shared.-5


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Worthiness

This is the thought that I am working on this week. If you are anything like me, you totally believe it of others but somehow when it comes to you… it’s no longer a conviction but something you would like to believe.

So believe with me. I am worthy.

Worthiness

 

 

 

 


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How I realised that “Because I said so” is a life skill

Back in May I wrote a story and shared it with about a dozen people at a Storytelling Night. It’s longer than my normal posts so I kept telling myself that this isn’t the place to share it. Well, I want to share it anyway. If you’ve got a few minutes, read on.

How I realized that “Because I said so” is a life skill

When I saw the post on Facebook about this event I loved it and my first thought was “I’m going to go! As a spectator”. A few seconds later this thought followed “go and read” and before I knew it, I was signing up on eventbrite. There was no reason or explanation. I have never done this before. Just a voice in my head saying: “do it”.

Then I saw the theme. Because I said so. I write about living with chronic illness. I write about self development and how you can get yourself unstuck. What’s that got to do with Because I said so?

I spent the next 2 weeks being completely blank. What story can I tell? And yes, the rules aren’t rigid or strict and I could write about whatever I wanted but….. there is something inside of me that always tries to do what I have been asked.

My default association with this phrase is that is negative. How many times have I yelled this at my kids?

Yes, I patiently explain the logic behind my instructions or involve my kids in the thinking process in how to come up with a conclusive course of action. I want them to be independent, self-sufficient. Leaders, at least of themselves.

Not sheep. Not blind followers of others. Because I want them to choose their lives. And a tiny, terrified part of me that has watched too many episodes of Criminal Minds and that doesn’t watch the news anymore because of all the terrible things that happen, wants them to fight like mad if anyone tries to grab them or do things to them.

I want fighters.

Ok, here’s a confession. I don’t always do that patiently. The explanation. Sometimes I’m having a bad day or they are behaving little brats and pushing all my buttons and the conversation is more like this:

“Put your nickers on.

Come on, move it! How many times do we have to have this conversation?

Stop prancing about and put your bloody nickers on! Now!”

I kind of understand the running around completely naked thing but putting your vest and t-shirt on, even your socks and yet your butt is still bare? What the hell is that?

I have often thought of this tactic, because I said so, as being the last resort of a tired parent. Probably because I only use it when I am tired.

So while I was thinking about what on earth I was doing, signing up for this, I realized something. I had no reason, no explanation. I just listened to a voice in my head that said just do it.

That started me thinking: where else in my life do I do things, just because someone else has said so?

When I was a teenager my mum used to tell me to just get up and dressed by 8am on a Saturday, even if I was going to read in bed all day. Just get up and get dressed first. I never understood it (and fought it a lot) but I get it now. Sorry mum.

It happened at work too. Stopping that project half way through because someone at the top didn’t like it. There was always a lot of blah blah blah around it: “new direction”, “maximize synergies” etc but it always came down to someone new at the top saying no.

And at home. My husband telling me to eat. In my pregnancy with S, I was really sick. At 4 weeks, the vomiting started and didn’t really stop until about a week before she was born.

Within the first trimester I was admitted into hospital 4 times due to dehydration and lack of nutrition. And a kidney stone. I was extremely nauseous and on bed rest. I didn’t feel hunger and didn’t want to eat so I didn’t. So my husband made me snacks and I ate them when he told me to. If he left the food with me, then more often than not, I would stop eating after a couple of bites. So he started staying and I ate. Because he said so.

Then one day he looked at me and told me he was taking me to the hospital. Okay I said. We didn’t have an appointment but he said he was worried so we went.

You see I was vomiting so much that I was on antiemetics. There is one that is safe to use during pregnancy. However a possible side effect is depression and I had sunk so deeply, so quickly. I knew that if I didn’t eat more I could die and I didn’t care. My apathy was complete and I had no desire to change anything. I wasn’t eating, it was dangerous and it was ok.

When he looked at me he saw that in my eyes and he didn’t like it. He told me to put my shoes on and I followed.

They admitted me. I talked to a shrink. I chose to stop taking the medicine and within a couple of days the fog had lifted. The world, which had become hazy, had sharp edges again.

I was still extremely nauseous, but I was ok.

For me there is a power in these words “because I said so”. In that moment, it was the power of protection: you are hurting yourself and I am telling you to stop. No debate. No time wasting. Just stop.

There is also the power of liberation. Take the birth of S. The doctor told me when to push and not push. I was induced and it took quickly. Within an hour I was having contractions less than a minute apart and I was puffing like Thomas the tank engine on speed, trying so hard not to push. I didn’t have time to think and I didn’t know what to do. My first, F, was born via cesarean so I hadn’t done this before.

So I did as I was told: “don’t push, don’t push, don’t push. Ok push”.

I didn’t need to figure it out or make decisions. I could let go of all responsibility and just focus on doing puffing and pushing. What a relief.

I have changed my view on “because I said so” and I have found these 3 things to be true:

ONE

There are times in your life when you just have to listen to someone else. We do not always get to choose: like all those projects that got cancelled. We need to accept and with acceptance, frustration disappears. This is important for the happiness of our children. It’s a skill that they need to learn.

TWO

It is liberation and an act of kindness. How many of you been stumped by this deeply philosophical question: what should we have for dinner today? Some nights, it kills me.

“What? I need to decide everything? Just tell me what you want and I will make it.”

Sometimes we need to be free of the responsibility of making decisions and just have someone else do it.

So it is an act of kindness to my children when I tell them:

“We’re eating spaghetti for dinner today. No discussion”. Or “Time for bed”.

THREE

It is the last resort of a tired parent. Maybe there are times that I need to start the conversation that way.

Because I said so is a life skill.


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5 tips for the caregiving husband. #heforshe

My sister and I were reminiscing the other day about things that happened in our childhood and as she talked I realised that I hadn’t thought about these events – big events – for years. I had never thought “what was that like for everyone else?” I started to see them a new light and it made me wonder what our history with Bartters and chronic illness was like for my husband, J.

The mystery of : what was wrong with our child? The emergency caesarean. All the hospital drama (our very own Greys, but without any of the hook ups). The years of intensive care and so many near misses.

I know what it was like for me.

But dear J, what was it like for you?

What is it like for a man when he finds out that his wife might lose her baby? His baby?

What’s it like to see the business end of a cesarean; cuts through seven layers of her body, edges pinned back while they put their hands in to pick up your little baby saying “grab the other leg”?

What’s it like to leave your wife on her own, barely able to walk to the hospital to visit F, because you need to go back to work? (just to clarify, I wasn’t walking all the way from home, that would be heartless! I was at the Ronald McDonald house next to the hospital).

I do not know what that is like, I can only imagine. I do know this: when you are sick or it is you that has had the baby, everyone knows what is wrong, they know they need to express sympathy of some kind. They do not expect you to come to work.

But the husband? They expect him to come in, be focussed, do their job. Carry on as normal.

Because while they understand the terrible situation you are in and have sympathy, there is still a job to be done.  They give you a day or two of leave and that is supposed to be enough. You might use some of your vacation days too but there is only so much extra leave that you can take before employers start to feel that they cannot rely on you.

So, husband with the wife who needs you and the child who is fighting for her life, what do you do?

You can’t do everything and someone is always going to be disappointed. Rock and a hard place, that’s where you are my friend.

Here are some suggestions, from a woman who has been on the other side, noticing what you have to deal with.

  1. Accept: you can’t do everything. And that’s ok.
  2. Breathe. Deeply. You get cranky and uptight when you do that shallow, upper chest only breathing. If your belly is expanding when you inhale, you are breathing well.
  3. Sleep: take naps. Lack of sleep really compromises your decision making abilities. It just messes up your thinking. I know you are trying to get those extra things done but just tell me you need to sleep and I will make sure you don’t get disturbed.
  4. Choose: don’t do it all. Let some things go. Choose what feels right for you. Make choices you can live with. We (the wives) may not always agree or understand your choices but you can escape us, at least for a while. You can’t escape yourself.
  5. Talk. Man, I don’t know how to stress this enough. Talk to your boss. Talk to us. And when talking to your wife: use simple language (especially at the beginning). We may look calm and rational on the outside but inside we are freaking out. We have no idea what we are doing and are scared. So don’t ask us to figure out what you mean, be obvious and clear. But don’t patronise us because then we will bite your head off. (Ah, there you go back to that rock and hard place)

 

Finally, why do I have the #HeForShe tag on this? Well, this post is also about feminism – the equality for both men and women. When we talk about babies and their illnesses, most of our thoughts go to the mothers and how they deal with it, what support they have. But what about the men? What support do they have? I hope this post highlights that we need to think about them too.

Breathe


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Invisible Scars

A year ago today I got the message.

Alone in my bed, late at night, crying in devastation at the loss. My mind and heart shying away from the awful truth, not wanting to accept it.

My brother-in-law found my nephew, his 17 year old son, hanging from a tree in their back garden.

I still can’t think of it without crying: that you were in so much pain, so taken by this terrible illness.

You have been irrevocably changed, unable to talk, unable to do so many things.

And we have all been changed too. Something inside of us has broken and will never get fixed. Not because of what you did, but because of your pain.

We may get on with our lives, laugh, make plans for the future, but this will always be there: that cut deep into our heart and soul. We miss you.

 

 

If you are affected by this in anyway, talk to someone. Tell them your reaction to this story, share your feelings, your thoughts.