I write about both the good and the bad that comes with living with chronic illness. Today is unfortunately about the bad.
On Monday we found out that a boy in F’s class at school, whose initial is I, died last week. His illness had taken over and there was nothing more they could do. His parents and the teachers knew it was only a matter of time until it took him. And it took him last week.
F cried and remembered J, another boy from her school who died last year. When she got home she told us she felt wobbly inside thinking about them, thinking that she didn’t want this to happen to her.
I wish I could tell her that it won’t but as I write, the daughter of a friend, who has the same illness as F, is losing kidney function by the week and is almost in stage 4 kidney failure.
Did you know that you can’t tell if your kidneys are failing, unless you test for it? Well, that is until it gets really critical.
This is why we need check ups so often. This is why we need to take her to the hospital if she gets stomach flu and vomits for more than a day.
This risk is always there.
It’s as far away as the sun, and closer than her shadow, all at the same time.
That’s what is different about chronic illness.
In memory of I, a sweet soul. Prayers and all our love and compassion to you and your family.
A while ago I wrote about the Art of the Brick exhibition. I couldn’t decide if we should go or not.
Well, we went.
It was really great. It’s amazing to see these great pieces of art and sculpture. My thoughts flitted between “oh, so that’s how you do it” (to recreate The Scream with lego) to “how will I ever be satisfied by my own creations ever again?”
S didn’t break any pieces but she did hug the lego man in the play area at the end. And started to build onto him (well, they put lego there to play with! it was hard to stop her).
F loved it. She listened to the audio tapes about the artwork for every piece. Well, she certainly used the device and entered the number for each piece, I don’t know how much of the recording she actually paid attention to.
Sometimes you just need to stop thinking and go and do what your heart desires.
S is at that age when she really wants to see the picture you have taken, and comes to look before I have even taken the picture. But trust me, it was really cute to see her hug this lego man.
I’m taking a break this week. I am tired, pleasantly tired . Oh and replacing the kitchen so the house is a mess.
If any of you know where to get one of these for humans (not an ordinary hammock but just like this and especially with the fluffy lining) don’t tell me where I can get one, just send one to me. Please.
The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.
What can I say? Who know what goes on inside her head.
This is a story about this special, quirky girl.
Control the Fun
It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.
Let me explain.
Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.
Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.
He doesn’t.
Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.
So as you watch, what do you do?
Do you stop her, calm her down? Or do you let her enjoy the moment?
Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?
Or do you keep her safe in a life without the heights of joy?
People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.
It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.
A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.
If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.
But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.
The price that she has to pay is just far greater than we have ever had to pay.
So back to the little 3 year old girl. What did you decide?
Did you keep her safe and out of hospital? Or did you let her live a little?
We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.
We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.
She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.
Well, after finally building up the strength in my fingers to get them super strong (I now have hands like a giant), we are back to the original, easy snap version of these tablets.
So how were we able to defeat the bureaucracy of these insurance giants with their “No! No! No!”?
What amazing feats of ingenuity and persistence did we employ to be able to get these tablets?
Well, I’ll tell you.
One day, J mentioned to the pharmacist (different person, different establishment) that it was a shame that we couldn’t get the original tablets anymore.
That’s it. That’s ALL we did.
The lovely person behind the counter said “if you want those tablets, you can have them”.
We did not question they whimsy of this process, we just took the tablets and ran.
Final word:
It’s funny how easy life can feel when a seemingly small irritation is removed. It’s a funny truth of the world that small irritations are only small if they happen just once.
I have noticed that lately I have been avoiding writing about what it’s like to live with chronic illness.
At first it was because it was confronting and a bit scary to write it down. It was like it had become REAL all of a sudden, instead of just thoughts. Thoughts, that were like whispers of smoke, that you can send away with a wave of your hand, became solid, hard, here to stay.
Then I told myself “but life with chronic illness is not just about the illness. There is more to our lives”. This is true and I will continue to write about the whole life, not just that one part.
But there was something underneath that.
I had started thinking “who is going to keep reading this?” It’s depressing. It was getting me down. Surely I’m bringing everyone else down too.
Many aspects of life with chronic illness do get you down, wear you out.
Here’s an example.
F has a feeding tube, a Mic-Key button. There is a permanent hole in her stomach, an open wound that can’t close because of this silicone tube that is stuck through it. She needs it but her body knows there is a hole and wants to close it. There is a constant battle.
When she moves, it moves and sometimes it rubs, like the other day when she was playing in the sand with friends and sand got under her t-shirt and into the hole. What can I do? This is The Netherlands! Its almost 90% sand here! (ok, don’t fact check me on that but there is a lot of sand everywhere, you can’t avoid it).
Sometimes gastric acid leaks out and that burns.
Sometimes it just hurts, for no discernible reason.
For the first few years it leaked a lot, which hurt and made the hole bigger, which lead to more leaking, which made it hurt more … you can see where this is going. There was not a lot we could do and no matter what we did, it still hurt.
The frustration is indescribable. Your child is in pain and there is nothing you can do. Even after all this time it makes my heart sink like a stone into my stomach when F says “ow, my mic-key hurts”.
The sinking heart is not about her pain, it is about mine. Inside a voice is screaming to the world “what the hell am I supposed to do?”
I can’t do anything so I don’t really want to hear about it. I try to comfort her, to acknowledge her pain. I take care of it and relieve some of the discomfort but it doesn’t really help.
I think we all have a capacity to cope with the fact that there are horrible things in this world that we cannot change. When chronic illness is involved, there are so many things in life, from the teeny tiny to the big, that we get really good at acceptance. But there is so much opportunity to express this virtue that we use up our reserves of “Accept What You Cannot Change” and we become maxed out.
So one of the ways I try to manage is to hide away from the world news. I even get cross with J when he tells me about some new stupid rule the government are trying to introduce that will make the lives of the vulnerable worse. I get cross and ask him not to tell me. My “Accept What You Cannot Change” reserves are used up and that leaves only “Do Something About It”. And this is where it sucks. I don’t have the energy or the time to take action and “Do something About It” either.
That just leaves frustration.
So I don’t watch the news. I don’t talk about the state of the world or get involved in politics (housemates from Uni, you will not believe this is me). This works for me most of the time, helps keep things manageable.
I feel like I should say that I am working on increasing that capacity – finding patience or something. I will write about that soon, but not today.
I used to think we had the mic-key pain under control now but I don’t know if that is actually true or if F has just stopped telling us. Today she said that it hurts everyday. Maybe she feels it too – that I’m maxed out and that there is nothing we can do – so she doesn’t say anything until it’s really bad, like that sand the other day. That just makes me cry.
Stoma / g tube care tip: About a year ago we starting using bamboo g tube pads. They are really soft, absorbent and reduce/prevent granulation at the site. We get ours from Patchwork Peddler. The redness, irritation, infection and pain has really reduced since using these. I am not affiliated with this company nor do I gain in anyway from promoting them. The pads are just really good and have drastically reduced the pain. F used to cry at some point every day from the pain at her g-tube. Now she doesn’t.
amber rahim 