amber rahim

Chronic illness: the parts we don't talk about


by 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.

 

 


by 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.


by 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.

 

 


by 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.


by 2 Comments

The balancing act of chronic illness

So if you’ve been following my blog you know that I am the queen of “give it time” and “fight for help”.

Waiting for your child’s health to become stable, for them to start eating, to stop vomiting…. it takes a multidimensional approach and time.

And sometimes, you just need to get in the doctors face and say “enough”. Now you need to listen to me and do something about the vomiting, not eating, etc.

It’s a balancing act and it requires a lot of strength, patience, and fortitude.

Well, it turns out that I’m pretty good at doing that for my daughter, but not so good for myself.

My endometriosis, IBS, and depression got really bad a couple of years ago and I took action. I tackled the IBS which helped the depression (did you know that there is a link between inflammation and depression? Well that’s were my depression was coming from and I changed my diet to reduce inflammation en voila, I felt physically and mentally better).

The diet change for the IBS has also alleviated some of my endometriosis pain. It’s brought it back from constant and excruciating, to just pain most of the time and manageable (manageable for someone whose just so glad not to be in pain everyday).

Which means that for the gynaecologist I saw in Jan, I am no long “sick enough” for them to offer anything other than pain ills and contraception.

Nice. I’m contraindicated for both. Thanks Mr and Mrs Specialist. How is that I understand my illness and medical records better than you?

So I’m currently caught in this other type of balancing act:

  1. If you help yourself, you are no longer sick enough for the doctors to help you

  2. If you don’t help yourself in every way you can, then you are in a lot of pain

How do I find that sweet spot between

being seen as ill enough for the doctors to actually do something

and

not being in excruciating pain?

LIE. Just lie about it.

That’s another balancing act for people with chronic illness:

Truth versus Honesty

So at my next appointment I’m going to describe how it used to be. Pretend that I still have it. Because endometriosis is a progressive illness, and it creates inflammation in the body.

The truth is, I need help. But honestly, it’s not as bad as it was.

But as I wait, I can feel it getting worse. Both the physical pain and my mental state.

And do you know the worst thing about depression? It robs you of your will to do something to help yourself.

Actually, this is the worst thing: you start to feel worse. You are also quickly losing the capacity to take action and help yourself. You feel the darkness coming and you do nothing.

Well, I’m not doing “nothing”. For starters, I’m writing about it. Writing really helps me to get clear about what’s going on in my head, in my body, in my soul. It’s a way for me to figure out what to do next. So now I know. Lie my pants of and make the doctors help me.

cropped-10202851.jpg

 

 


by Leave a comment

The one about the shit train I’ve been riding…

A really good friend of mine wrote this. And it needs sharing. I so get it and I know many of you reading this get it too. show her some love. not the “hugs” kind. you been there, do for her what you would want me to do for you. Amber

Don’t expect a lot of positivity in this post.  It’s hard keeping your shit together at times, and sometimes even the most zen want to just say ‘Fuck it.’

Source: The one about the shit train I’ve been riding…