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Chronic illness: the parts we don't talk about

Category Archives: chronic illness


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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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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.

 

 


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When gluten free rocks #glutenfreeadventures

I’m not going to lie. I do spend too much time thinking that being gluten free sucks, especially when I add in the low FODMAP diet too.

The health benefits are great but man, I miss cheese on toast. And gluten free bread just isn’t bread.

And honey, the manna from heaven, wreaks havoc with my body. White sugar? The evil of our time. Now that I can have.

Makes no sense (said in Eddie Izzard style).

And then I’ll have a day like to today when I hit the jackpot.

raspberries with sweetened condensed milk

image

This I can have.

Gluten free rocks.

Ps, yes I did eat a bowl, have a foodgasm, then write this post. But what’s a post without a picture? Now I have to eat a second bowl. Oh how I suffer for my art.


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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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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.