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.
I read this story below and felt such a great connection to it that I created a page on my blog for it, called “inspire me”.
A young lady confidently walked around the room while leading and explaining stress management to an audience; with a raised glass of water. Everyone knew that she was going to ask the ultimate question, “Half empty or half full?” But she fooled them all… “How heavy is this glass of water?” she inquired with a smile.
Answers called out ranged from 8 oz. to 20 oz.
She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, that’s not a problem. If I hold it for an hour, I’ll have an ache in my right arm. If I hold it for a day, you’ll have to call an ambulance. In each case, it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued, “And that’s the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”
“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced.
So, as early in the evening as you can, put all your burdens down. Don’t carry them through the evening and into the night… Pick them up tomorrow.
Whatever burdens you’re carrying now, let them down for a moment. Relax, pick them up later after you’ve rested. Life is short. Enjoy it and the now ‘supposed’ stress that you’ve conquered!”
When looking after someone with a chronic illness or someone with intensive care needs it can seem like you can’t put the glass down, no matter how much you want to.
I was like that for me. These are thoughts I had all the time:
“If I don’t get up every 3 hours at night to administer the medicine, who else will?”
“She’s my baby so it’s my job to do everything”.
I have been struggling with the advice of the story – which I think is brilliant – and the reality of stuff needing to be done: regularly, intensively and without end.
This is the conclusion I have come to: this story works for us too.
So maybe you can’t put the glass down. Your arm is aching and the glass is slipping through your fingers but you just can’t put the glass down because someone needs that glass to be held. So what do you do?
Maybe someone can hold the glass for you, just for a little while. No? Ok, I challenge that and I will explain later.
For now I will accept your that your answer is “No”.
This story still works.
If you really can’t let someone hold the glass for you, even briefly, then at least let someone help you to hold the glass.
Someone can help you hold up your arm. Let them do that while you hold up the glass.
Let them bring you a chair so that you can be comfortable while holding the glass.
Let them guide you to somewhere where you can lean your arm on something and give your muscles a rest.
Someone can help you hold your fingers around that glass to stop it falling out of your tired, cramped fingers. Maybe they can tape your fingers to the glass, and then keep an eye on them to make sure your blood circulation is still ok. And feed you. I mean, your hands are taped to a glass! How can you feed yourself?
Here’s something important to realise and I didn’t. I didn’t realise it until my daughter was admitted to hospital just because I was exhausted and this was the only way to arrange emergency respite care. My daughter’s nephrologist who saw me that day said “are you ok? You don’t look ok. Let us help you”. You see, it was an emergency. I was so exhausted that I just wanted to lay my baby down on her bed and then leave. Ok, ready for real honesty? I wanted to throw her on the bed and leave. To get away from it all. To find a nice dark place and curl up and stay there. Forever. I’m crying just thinking about how weary and exhausted I was.
Maybe you just read that and thought “what kind of mother is she?” Well, I will tell you what kind of mother I am. I am a mother that didn’t do that. I felt like it and I had thoughts induced by sleep deprivation and severe stress of being responsible for keeping my baby alive.
Maybe you read that and there was recognition. I know I’m not alone in this, that you have these kinds of thoughts too. That’s why I started this blog. To talk about the things we don’t normally talk about. I know I am not the only one who has had that thought and I want to tell you that it is ok.
Feelings and thoughts are just that, feelings and thoughts. It is ok to have unpleasant thoughts. They are a sign that something is not ok. You are telling yourself: you need a break, you need some help.
Thoughts are also not actions. My actions were: showing that I needed help and then accepting it. My baby was taken care of and I took care of myself. I slept. I went to visit her the next day and I held her and sang to her and didn’t do any of my normal carer activities. I was just her mum and it was amazing. Then I went home again and slept some more. After a couple of days, I took her home again.
I have never had that thought again.
So this is what I realised: you cannot do it all by yourself. it’s ok to ask for and accept help.
Let someone cook dinner for you, do your washing, get your shopping. When your friends come to visit, let them make the tea and coffee, and tell them to bring the biscuits too.
People around you want to help. Let them. Give them something specific to do and you will both feel better.
Ok, back to my question: can someone else hold the glass for a little while? YES, yes and again yes.
You do not have to do it alone. Someone else can hold the glass for you. You are not a bad parent (or daughter, son or partner) if you don’t do it all yourself. In a hospital, care home or hospice they don’t do it all themselves. Each carer works their shift and then they go away and take a break. For hours. Can you imagine that? A break for hours!
If the hospital, doctor, social worker, whoever, if someone offers you respite care or assistance at home: take it. Check it out, be comfortable with the care offered, get in their face and tell them how to do it if you have to (we certainly did) and then let them take the burden off your shoulders for a bit. Then breathe. Deeply and freely and recharge yourself.
If they make a mistake, then educate them. Tell them “no, not like that, like this”. Work with them so that they know what to do and how to do it. Then use the respite care or assistance again. Then breathe again.
If no one has offered you respite care, go and look for it. It is out there. Ask the doctor, specialist, social services at the hospital. Join a support group and ask them.
Not only is it ok but it is the right thing to do.
It may take some effort to find help but you deserve it. Your child, parent or whoever you are looking after deserves it too.
Don’t wait until the glass slips or for the emergency hospital admission. Take that step and ask for help now.