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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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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Cookies will not be my downfall

Today the biscuits are tempting me. I’m volunteering at an event and I’m manning the reception desk. Women are embarking on a journey into economic empowerment. It’s wonderful to be a small part of this. Now that they have moved into their first workshop, I’m making myself a cup of tea. I can smell the sweetness of the biscuits. I can feel the crunch, the way the crumbs melt in my mouth….

What a beautiful daydream. My mouth is watering.
This is the first time since starting my #glutenfreeadventure that I’ve been tempted.

Usually, I see bread, cake, biscuits and I see poison. Because for me it is poison. It poisons my mind and sends my body into an IBS nightmare.

But since the beginning of September, my IBS has been back and camping out in my digestive system like French truck drivers on strike.

It’s not a result of me going off my special diet. I haven’t changed anything. But I’ve gone from no IBS symptoms to constant trouble.

The only cause I can think of is my endometriosis. I can feel that getting worse. And it is a known cause of IBS. And it’s incurable.

My two pregnancies etc have taught me that hormone treatment is not an option. I’d be like a bulimic on steroids. I might even vomit more than F used to do.

So I’m feeling royally f***ed.

It’s not a helpful perspective. And I’m struggling to shift out of it.

But those cookies I could smell? That was the nudge I needed. No matter how good they smell, they are poison.

It’s easy when things are going well. It’s when the problems start that you get tested. And I’m being tested. I was drifting. But those cookies may have just saved me. For today at least.


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Dusting off my soul, again

It’s been an art day today.

I saw this article about thanksgiving through art and laughed.

The Mondrian styled plate caught my eye and reminded me of the unappreciated benefit of art: it’s good for your soul.

pietmondrian

It also reminded me about one of my posts in way back in February Dusting off my soul. There is just something about art that lifts us out of the compactness of our lives and into a bigger space.

This afternoon I tried to make a van Gogh today: a starry night on MiniSteck. S was “helping”. Now that is a trial in patience. It was beautiful.

In case you’re wondering what Ministeck is here’s a pic.

ministeck


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Dear children, your happiness is not my goal

I sometimes struggle with being a parent, it seems so hard and kids just seem so determined to do their own thing. I sometimes wonder “what is it that I am supposed to be doing here? How can I know if what I am doing is right?”

So I did what I often do when faced with life’s big questions, I perused Facebook. Specifically, my saved items in FB that I have saved because they look really interesting and worth my time (but will actually take some time to look at so I  decide to do it later and continue with the chitchat instead).

I watched this Ted talk by Jennifer Senior on happiness for children. It’s 18 mins long and if you cherish your sanity as a parent, I highly recommend that you watch it. It is the inspiration for my post today for 2 reasons

  1. she has put into words thoughts that I have been struggling to define (and has research to back it up)
  2. I want the best for my children

So here is my attempt to explain why my isn’t my goal to make my children happy.

It helps my sanity, and certainly my anxiety, that I am naturally quite lazy. Hmm, hang on, thats not quite right; I work very hard when I believe in something. But when faced with something I don’t believe in, my response is “what’s the point?”

When it comes to parenting, these are some things I don’t believe in:

  • I don’t believe in parenting as a verb

Until the 1970’s, parent was only a noun (thanks for the info Jennifer): something we could be, not what we could do. This small grammatical change seems to coincide with an increase in the amount of work we apparently need to do as parents. So many objectives, so many goals, things we “absolutely must do” and things that we “must never do”. And that can be the same thing, the answer just depends on who you ask! Why should there be so much work? What is the point of all that running around, of the stress?

  • I don’t believe our goal, our objective, should be that our children are happy

I truly want my children to be happy but I also believe that we are responsible for our own happiness. So how can my children’s happiness be my goal? How can I make sure my children are happy? Take away their autonomy? Take away their independence? Replace it with instructions of do this, do that?

How would I even know what to do for my children when I get lost and sometimes can’t figure out how to make myself happy?

So what are my goals?

When Jennifer says “what if we aim for productive kids, moral kids, and hope happiness will come from the good they do and the love they feel from us?” my heart sings and my soul says “Yes!”

What if my goal as a parent was to teach my children decency, work ethic, love?

Well, to start with, I know what to do to teach these. I can demonstrate decency, a good work ethic and love. I can explain what it is (to me at least) and encourage them to develop their own values.

I can praise them when they practice it with a “you worked really hard on that”. How would I praise happiness? With a “well done, you are happy”? I think they would just look at me like I was a loon.

Decency. Work ethic. Love. I can work with this.

As I write this I realise this is exactly what my parents did for me. They taught me decency: how to treat others; how to behave in society so that my contribution is positive; how to stop myself being rude to the obnoxious colleague and still stand my ground.

They taught me to work hard, work thoughtfully and to be proud of myself.

They taught me how to love unconditionally by loving me and each other that way.

And you know what? I’m pretty happy. I’m fairly confident. So maybe it works after all.

Decency. Work ethic. Love

 

p.s. I am not saying that I have the answer for everyone. This just feels right for me.

This is just my response to that overwhelming feeling from society at large that I should be making sure my kids are happy and I just don’t buy it. Check out what Jennifer has to say. Think about it. That’s all.


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The blessings of tragedy

Last night I had an opportunity to get to know some fabulous women a little better.

As we each took turns sharing something about ourselves it struck me that there was something we had in common: a pivotal moment of hardship. Something happened that made us re-evaluate our lives.

The result? We became women who choose what we want in our lives.

Consciously choosing to spend our time on things that give us energy.

And possibly more importantly, choosing what we don’t want.

Someone expressed what I secretly hope to achieve with my new business: “I only work with people that I want to work with”. How amazing is that? Thank you for your inspiration, this is what I want to be able to say.

As for the rest of my life, I have been working towards this too.  My life is not filled with lots of people, but the ones who are in it are important to me, that love me and I love them.

The precious time that I have, I want to use for them (and it is precious. About 25% of my waking hours are spent on being a carer).

So the blessing of my tragedy of chronic illness is that I know that time is precious. I don’t waste it. (much)

Now, look back to my 20s I wonder what I was doing with my time and I realise that a I was doing a lot of “filling it”. How tragic.

So now, like the ladies I met last night, I am consciously choosing, fitting the important things in first. And trying not to fill all the gaps in the jar with sand – but trying to leave empty spaces where the air can get in and I can breathe.

for-web-Big-Things-First

thanks Christi for the image

 

p.s while I was looking for images I came across this. Just love it.

buy the damn shoes

 


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“I’m going to runaway!”

Sometimes I let circumstances get the better of me. It happened this week. The details contributing to my mini meltdown are not relevant – could anything justify me exclaiming “that’s it, Im running away!”?

This post is about about what happened next.

run_away

The other day I was feeling pretty lost, tired and steadily being driven nuts by F’s constant interfering in everything I was doing (J, the irony is not lost on me. Taste of my own medicine? Absolutley).

I snapped. I told her I was going to run away. She replied “go on then” (small side note, I am incredibly proud of her response to me).

So that was the start of our role reversal and then this happened…

“If you stop being cross and say sorry then I want you to stay” said F.

…and the role reversal was complete.

My little F, not yet 7, is more mature than I am.

I don’t know what got into me (but there is a definite yearning for some peace, as in, alone time) yet I am grateful that F is so wise, compassionate and willing to stand up to her mum and call me on my silly behaviour.

My conclusion? Our children are better than us.

Yet I don’t feel better than my parents. What’s that about? Am I just at that stage in life where I am stuck in the middle, looking at the greatness that surrounds me? Feeling inadequate, hoping that I am not doing too much damage. Holding on to the idea that “what doesn’t break you, makes you stronger”. (be grateful kids, you’re going to be superheros when you grow up!)

Then we had the most wonderful conversation. We heard each other, we made agreements. We hugged.

Maybe F realises that I am only human. Actually, I think she always knew and loves me anyway. It is I who keeps forgetting my own humanity. Now to start loving myself anyway.