amber rahim

Chronic illness: the parts we don't talk about


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When the healthy kid is in hospital

Parents of a child with a chronic illness go through a really fast track of learning to cope with medical emergencies.

They know the drill: we have done this so often, and honestly, we expect it. We know what the likely outcome will be, and are generally badasses at coping with the stress.

Until the “healthy” kid gets sick.

So today, I’m in a bit of a state. My stomach is in knots and I really don’t know what to do with myself.

S, the one without Bartters syndrome, had an accident today at school and needs surgery on her thumb. It’s serious. And I don’t know how to cope.

And those chocolate cookies have done nothing to help.

I want to be at the hospital. This may seem normal to you, but with F, I’m ok with just J, her dad, being there. Because we have always taken turns, tag teaming hospital duty like olympic athletes.

But with little S, I want to be there. But I can’t. F has spent so much time in hospital and treatment that she actually has PTSD from it and a Phobia of medical treatment. So she is too scared to go.

So I am at home. Letting out my trembles and fears in this post. Cooking a dinner that will most likely churn in my stomach for hours.

Waiting.

 

 


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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.

 


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The little white lies

On Tuesday I was talking to someone and mentioned I was at the hospital. People always get alarmed so I usually say “it’s just routine stuff”.

Because it’s not an emergency. These are planned visits.

But this was my “routine stuff” visit yesterday:

after months of therapy and hypnosis, take my 8 year old to have a procedure that she is absolutely terrified of.

That’s my routine.

It was difficult a day and here’s what I wrote.

But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.

So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.

So we’re going to see if we can do this with laughing gas, to put her under.

The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.

Putting aside my feelings, I was really clear to hear:

it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.

But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time travel and this is what she wants to do with it.

So creative.

So scared.

And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.

Here’s another white lie I tell:

I’m just doing what any parent would do

I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.

Here’s a final white lie

that unconditional love comes from our children

That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.

We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.


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Lamb to the slaughter and other dramatics

Lamb to the slaughter. No matter how much I reason with myself, this is the feeling that I have.

F is the lamb and getting her mickey button changed is the big sharp knife.

its been 4 months since the last change. That awful day when 2 adults, me included, pinned her down while a 3rd pulled out the old mickey and put in a new one.

4 months since she stopped talking to me for 2 days.

We’ve done a lot to help her since then. We needed to. Her fear and anxiety are so high that  I can spook her just by walking into her room.

So she’s been learning self hypnosis: designing her own happy place that she can go to when needed. When she needs to be calm enough to have her mickey changed

And she’s loved working with her therapist  loves doing the exercises. Even when we forget, she remembers and insists on doing them. What a star.

so she is prepared. We’ve done everything we can.

But on the way in to the hospital she says quietly

“I wish I was someone else”

So I know. For both us this journey is like going to the slaughter house.

I can hear the shouting from here.

its a good job I don’t eat cookies anymore; I’d be the size of a house.


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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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“Jobsworth” at the pharmacy

Ever heard that phrase “oh, that’ll be more than my jobs worth”? Well, if you are British you might have. It’s a joke about the types of unhelpful people you can run into in heavily bureaucratic environments.

Oh, I could help you but it’d be more than my jobs worth to do that

That’s the feeling I get when I call the pharmacy to order more medicines for F. Not with everyone at the pharmacy, just the one lady.

You see we have a running repeat prescription that covers the whole year. At the beginning of every year, F’s Nephrologist makes out the prescriptions for all her medicines and sends them to the pharmacy. Every month, we tell them what we need and they deduct it from the year total. Simple, I thought.

Yet this one lady gives us hassle.

Every time we call.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….” then in my head “It’s in your SYSTEM!!!”

Every time we go in to collect.

She:

“Do you have a repeat prescription for this?”

Me:

“Yes. We have a prescription to cover the year….. etc….”

Then she grudgingly hands it over.

Now I know she has protocols to follow. I know how strict the rules and regulations in the pharmaceutical industry are (I worked in exports to the Middle East and boy, the hoops you need to go through to get that job done!) But no one else at the pharmacy does this. They all know we have a year prescription.

But our daughter has been getting medicine from their for almost 8 years. And still she interrogates us. We have never not had a prescription.

I don’t think it is personal. Although, when you are standing in front of her steely, suspicious gaze in front of an entire pharmacy full of people, and she starts her interrogation, it sure feels personal.

So what kinds of drugs are we talking about here? With a really high street value? You’d think so, but no.

  • Sodium chloride (salty water, but special salty water)
  • Potassium chloride (different kind of salty water)
  • potassium citrate (I don’t know, but it helps her kidneys from turning to stone)
  • Nexium (to help with acid reflux.)
  • Indomethacin liquid (used in treating eye infections for normal people but it’s the main magic drug for Bartters peeps)
  • Vitamin D

So dear lady at the pharmacy, I do’t know why you give me such hassle. I don’t know what you think I am doing with this stuff. I couldn’t administer the lethal injection with the potassium chloride we get (I checked. Say what? Yes I know, it’s freaky. I was curious and wanted to know if we had dangerous quantities in the house and I had some time on my hands).

Dear lady at the pharmacy, please stop. Most days I can shrug it off but we have enough crap to deal with and traumas that we don’t need you to hassle us over something so meaningless.

Go find some other way to exert your power.

Try smiling.


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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.