Life on dialysis has it’s ups and downs. I’m attached to a machine for 12 hours. I hook myself up at night after I’ve cooked and dished up. Then I watch TV. My machine is on a trolley but its not great lugging the thing around, but I do. Otherwise I feel like a prisoner. So for 12 hours I’m pumped full of a glucose solution. 10 litres over a 12 hour period. It’s the only way to remove excess fluid from my body.
I really miss my kidney function. I used to take my kidneys for granted and never really thought about the important job they do. Like for instance, what I eat plays a huge role in whether my dialysis works sufficiently or not. Most fruit and vegetables have high doses of phosphates or potassium. And because those substances can’t be dialysed sufficently I’m not allowed to eat too many veggies or fruit. My diet severly lacks in fresh veg and fruit. I used to be a vegetarian, and lived on pulses and nuts and seeds, fresh veg and lots of fruit.
Now I’m not allowed lentils, nuts, seeds and most dried fruit. And can only eat small quantities of fruit and veg. But no citrus, too high in potassuim. The list of no-no’s go on and on in the veg and fruit department. It does get to me some times. But I have to remind myself that it’s life threatening to me if my potassium levels get too high. Heart attack. No thank you. Renal failure is crap enough.
Some days when I wheel my trolley around I remember a time when I didn’t have this ball and chain. I do feel sad. It does feel like such a bind, such a horrible life saving bind. I so wish I didn’t have to do this. But I do. I can lament my situation as much as I like, it doesn’t change anything. All I can do is hope. Hope for a better future. Hope for some good news. Hope this won’t last forever. Hope. I sometimes despise that word. It means what I want hasn’t happened yet. I wish I was on the other side of hope.
As a family we have had to learn to live with our new reality. It hasn’t been easy, and we are still learning as we go. Some things have been easier than others. Like going on holiday. We are going away 3 times in the next few months. First it will be a weekend away for us. Then 3 days away with family then 2 weeks in the Cape. So that will be very interesting.
So we all learn to live with our new reality. I have to remind myself that there are so many people who have to learn to live with their new reality. It doesn’t make me feel better, it does make me feel not alone.
“You only live once, but if you do it right, once is enough.” Mae West.