amber rahim

Chronic illness: the parts we don't talk about


Leave a comment

Kids, I’m going out, without you

Now this is a post I drafted a couple of years ago while on holiday with my family, camping in De Veluwe, a beautifully wooded area of The Netherlands. One afternoon, I escaped and loved it. So here are my thoughts on why I don’t want to be with my kids all the time. Taking time away from my kids has been my saving grace, in recovering from burnout and to staving off care-giver burnout. It’s how I stay sane and happy.

I love my family but I don’t always want to be with them.

Once you’ve had kids, it seems to be that all your friends have kids.

It’s not that all the people you know also had kids. Nope. It’s that somehow, over time, you lose touch with the childless friends and start hanging out with other mums.

Which I love. They get me and I’m very happy that I have found my mama tribe.

Yet there seems to be this pervasive sense in the world that once you’ve had kids, all you’re supposed to want is to spend all your time with your kids.

Well bugger that. I don’t.

I love my kids. AND I love my time away from my kids too.

I want to spend time with my friends. Working. Doing the shopping on my own (oh the horrors of toddlers and shopping!)

I want to be by myself.

So we’ve been camping for a week and started to feel antsy, that I just want to get away. Everyday I watched the kids leave our camping spot to join the activity team or to play on the bouncy castle (yes, this is camping heaven for kids and parents) a voice inside my heart whispered

I want to go off and do something too

So I sent J to go and be with the kids and I went off on my bicycle made for one.

It was wonderful.

I could go in any direction I wanted.I could slow down and admire the sunlight through the trees of the forest I was cycling through. With no-one asking me what’s wrong. No racing to catch up with the rest of the family.

So I stopped. I admired the sunlight. Dappled, that’s the word. Gentle shadows. Glimpses into the deepness of the woods. So many shades of green.

The smooth new path. The bumpy, cracked concrete where the roots are pushing up.

The silence.

Oh, the silence.

Soothing. I can breathe here. I feel unfettered. Loose. Flowing.

I love to be alone.

Kids, I don’t hate you, I don’t dislike you. I love you, more than you can imagine.

And I also love to be alone. A lot.

So just as you go and play, so will I play. In my way.

Alone.

 

 


Leave a comment

Oh Mic-Key you’re so fine

you’re so fine, you blow my mind, hey Mickey!

If you are old like me, you remember that song (just click on the link above if you want a trip down memory lane).

Today I wished that the healthy one, S, had a Mic-Key button. This is an enteral feeding c3729405c2e58cb4a2af914378c94e0ddevice that is basically a piece of tubing that you put into the stomach so that you can put food/medicine directly into the stomach.

F gets all her medicine through hers.

Yesterday S had minor surgery to repair her thumb – the top came off, nail and all, in an accident at school. She has lost the nail and hopefully it will grow back. In about 6 months. I wrote about it here

Her bravery carried her through the poking and prodding of the doctors, the gas to sedate, the local anaesthetic. It lasted until she came home and we tried to take her coat off.

All the fear, terror, and pain came together to overwhelm her.

THEN we tried to give her antibiotics. She is in very deal danger of developing an infection in the blood but of course she doesn’t understand that. She’s little.

And it tastes yucky. She’s scared of it. Transference perhaps? But actually who cares. I need to get the medicine in her.

And in her own words:

Can I have a Mickey like F has?

That would make both of our lives so much easier right now. How do you guys get your kids to take their medicine?

You’d think we’d be masters at this: we do give F medicine every hour that she is a awake (and through the night too). But we have never had to make her drink it. She has a Mickey button so we always use that.

Now the healthy one needs to have medicine and she’s fighting. And it’s tough.

So today I wished she had a Mickey too.

 

p.s. chocolate is not a great motivator for this little sugar addict – I mean seriously chocolate, how could you let me down like this? Lollipop, you’re up next.


2 Comments

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.

 

 


Leave a comment

I’m sorry, but I can’t see you

Trigger warning: in this post I talk about suicide and depression.

It’s been 3 years. When I got the text, it really threw me. I haven’t been able to sleep since.

Dearest W, I can’t believe it was so long ago when it still hurts so badly. In the first few days or weeks after you did it, I was still in a daze. I don’t think I really understood what had happened. Seeing you in hospital afterwards, well, those images I can’t get out of my head. But you are at home now, have been for a really long time. You’ve even grown so tall. But I can’t see you.

And although I live in another country, and we don’t come over very often, that’s not the reason why I don’t come in and at least say hi.

And it’s not because you can’t say anything back.

It’s not because you might not even know that I am there.

And it’s not the 24 hours nursing care you have that gives little privacy.

Those are all the things I tell myself to explain why I don’t come in to say hi.

 

You see, I’m terrified. I’m scared that this could happen to me one day too.

 

The lat time I saw you conscious, there was a look in your eyes that I also cannot forget: despair. Pain. Abject…. absence of good feelings. I remember saying to J that I wondered if you were ok, but something deep inside me recognised that look, and ran away from it. I’ve been there. That place where you just want it all to stop. Just stop. Everything.

I regret so much that I didn’t hug you in that moment. I don’t think it would have made a difference to your plans. But perhaps for a moment you would have felt something.

So W, maybe you are wondering why I can’t see you. When I recognise it and I know what it’s like when you can’t ask for what you need. When I know how even the smallest gesture can change your world. Why do I not come in to see you?

Well, my reasons are selfish. It hurts too much.

  1. When I see you, I remember my darkest days and I don’t want to remember them.
  2. The future for me is not bright, and you remind me what I am fighting against. And I really don’t want to see that either. My depression is linked to my other illnesses. My endometriosis and resultant IBS mean that I have inflammation in my body all the time. Did you know that inflammation and depression are linked? I didn’t know that either. Before.
  3. My illness is progressive. It’s a slow but steady march. Increased Endo, increased pain and inflammation, increased negative thoughts and apathy.
  4. When I get close to your door, there is a part of me that shrivels up and hides. I think it’s my courage. And it gets replaced with a middle aged, overly polite British person and suddenly I’m all “Ooh, best not disturb them. Don’t want to make any trouble”. And I am overcome with an inexplicable urge to pop to the loo instead.

This time last year I was in a much better place. Radically changing my diet, lifestyle, everything, was working. I’m still careful about what I eat, I’m exercising, business is going well, I’m socialising, and I colour in my colouring books (art therapy). All the good things I need to do to not lose my mind. Yet I’m losing it anyway. So I’m running away from the most powerful feeling I’ve experienced in my life: the apathy. I don’t want to go back to that place. and I’m sorry, but that’s where I go when I see you, or even think about you.

This is not the legacy you wanted, and believe me, it is not your legacy. This is all on me. This is all my weakness, my fear, my thoughts.And I’m so sorry for the truly awful thing of looking at you and seeing only me.

One day, I’ll be able to look at you and see you. See. You. I’m working on it and I don’t know when I will get there but when I do, I’ll come in and say hi.

 

Note: please don’t leave any comments on how to treat my Endo. I know what I need. And what I don’t have yet, I’m trying to get. It’s just hard to find. And I’m not suicidal. I just wanted to point that out to reassure anyone who is worried, but also to make a point: we can be in a dark place and talk about our dark thoughts. And we need to be able to do this without worrying about getting weird looks afterwards or being put under safe watch. That’s not the place I’m in. In fact, we need to be able to talk openly about this side of life. That’s why I’ve shared this today. This is just what I am carrying. You do not need to take it over and carry it for me. Please, just witness it. Just let me share, knowing that someone has heard.


4 Comments

Difficulty eating, not picky eater.

“Oh, they’re a picky eater? Well, you’ve just got to be strict with them”

“Don’t spoil them”

“Let them go hungry. They will soon give in”

“When they see other kids eat, they’ll eat”

Some of the wonderful and pointless advice I have received over the years. And if you have a child who has difficulty with eating, then you’ll understand me when I say that there are two camps on the topic of kids and eating.

Camp 1

My kid had no problems and I think that’s because I’m a good parent. Do what I did and you won’t have a problem.

Or

My kid eats but I want them to eat more healthily. They ate the carrots yesterday but today they threw them on the floor. Oh my god, my kid has an eating problem!

We talk about this a lot and give advice to others whenever we can.

Camp 2

It’s nuts. Eating is something that all animals do naturally, without event thinking about it. But my kid has real issues with food and the process of eating. So how the heck do you teach an activity that is instinctive? Yeah, that’s what we are trying to figure out.

We get advice all the time but rarely get listened too.

And ok, there is a third camp. A camp of people who feed their kids, their kids eat, mostly, and they don’t worry about it too much. But they also tend to just get on with it and don’t give meaningless advice to others.

I’ve been in Camp 2 for the last 8 years. It’s been a long road. It’s tested my patience. I’ve questioned my parenting hundreds of times. I’ve let the whole thing go (my daughter had a feeding tube so what the heck) and I’ve worked at it like a demon. I wrote my side of the story on how to actually help your kids to eat in this post 8 ways to get your kids to eat

And in 3 words? Give It Time.

But today’s post is a celebration. A milestone has been achieved in our household.

F, my daughter with the incurable kidney disorder, the one who drank Maggi flavour enhancer, neat(!), for about 4 years, the one who didn’t eat more than crumb size bites until she was 5, the one who projectile vomited at the touch of a banana, the one who had to learn how to move food to the back of her throat so she could swallow it, well she ate a baked potato. With tuna mayonnaise. And a little bit of salt and butter.

A complete meal.

Not bits and bobs. Not a collection of random food stuffs. Not just a single item like tuna or a plain tortilla wrap dipped in ketchup (yes, that really was an acceptable meal for her for a long time).

A complete meal.

AND

She took a complete, normal sized bite. You know, the amount of food you can get on a teaspoon and that any other kid of 8 would eat. You know, where the food actually fills your mouth completely.

AND

She didn’t vomit or gag.

She just ate it. Said it was delicious. Then took another bite. And another bite. And another. Until it was finished.

I cried. I held my tears inside because, well, she would just think her mum was a freak. Can you imagine taking a bite of a baked potato and seeing your mum cry because of it? She’d call a doctor.

But inside I cried with joy.

She ate! a complete! meal!

I want to add exclamation marks everywhere because all the words are so exciting and so important!!!!!!!!!!!!

And you know what else? She loves spicy tuna maki. And eats the whole thing. Not just picking a few grains of rice out and drowning them in soy sauce (because really, that’s how she used to eat them). SHE EATS THE WHOLE THING

I know there are so many other battles still to face. So many other things she needs to learn how to do to look after herself, and I’m not even talking about her medical routine. But she can eat. She can finally do that one thing that so many of us take for granted. She can eat.

Woohoo!

For all of you who are facing this challenge, a child with difficulty eating, I just want to say:

Hang in there. You’re patience is just perfect. You’re impatience is natural and sometimes will give you the push your child needs to be challenged. And take time to celebrate the milestones. Because there are many along the way. The first bite. The first time the food stayed in. The first time they say “can I try that?” Enjoy them all.

Who would have thought that baked potato with tuna mayonnaise would make me cry with joy?

tuna

 

 

 

 

 

 


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

Yay for carrots!

I’m disproportionately excited about carrots.
Why? Because this is the 3rd vegetable that F will eat. It’s taken us 7 & a half years to get here but Yay! (As I write this I had a flash back to 6 years ago and a dietician suggesting I try carrots for F as part of the “she won’t eat anything what should we do” plan.
Well, salt fiend that she is, finally she likes that they are sweet.

So what veggies have we got in the bag?
Green beans
well, mostly the beans inside the pod (she picks them out herself)

Sweetcorn

ah, corn on the cob with lots of salt and butter

Carrots

roasted, of course. The best way to cook carrots.

Coming up next! Butternut Squash

actually she likes this already. She thought the roasted orange delights she liked were carrots. And like the fiend I am, I went along with it. Then one day she caught me out and I thought “oh pants”.

She suprised me. She wanted carrots  so I roasted some. She ate them.

so now no matter what I’m cooking for dinner, if she wants carrots, I put on the oven and roast carrots.

whatever it takes. I want her to eat so badly, I’ll do anything.

well, except when she asks me at 7pm. Then I make her wait until the next day. By the time they would be ready it would be bed time.

Oh, and if we don’t have any carrots in the house, then she’ll have to wait until the next shopping day.

Ok, I won’t do anything so that she will eat. But I do try very hard to have the things she likes to eat in the house. But if we are out, we’re out. Maybe she will try something else.

 

Note: I hate wasting anything so I just have to say: I use the small oven. I wouldn’t turn on the big oven just because she wanted carrots. 

Oh and she eats tomato soup and ketchup (Heinz I love you). But not together, eww.