Aiste shares #thisisme

12/08/2024

My new normal...

When the world was discussing the ‘new normal’ of the post-pandemic world, I was battling different challenges of getting to grips with artificial nutrition which I had never heard of. It soon became apparent that I needed parenteral nutrition (PN) as my weight continued to drop, and I needed various electrolyte top-ups every few days. I had my first peripherally inserted central catheter (PICC) and my life has changed.

That was over two years ago and although doctors kept reminding me how ill I was, I was determined to come back from the unforeseen challenges that landed me in hospital (aka being ill). Afterall, I had a plan in my mind. How hard can it be? It turns out quite hard. When you weigh only 38kg, are severely malnourished and suffer from fatigue, it is extremely hard work. However, when I asked myself a question, how much I want to live this life, my whole body would be striving to live, even with all the challenges.

I worked bit by bit pacing my activities. My plan was that the recovery would take a year maximum and then things would be back to how they were before. Plus, the PN of course. How wrong was I! The recovery is never a linear process, even if at certain points on this journey it may have looked so. I had multiple pauses, where nothing seemed to have been happening. Multiple times when I had to step back and to reduce my activity levels as I could not sustain the pace. At times I seem to have taken one step forward and two steps back.

Noone who goes on this journey can do it alone. Over the last couple of years, I had many people help me along the way to the ‘new normal’ that’s called my life. Besides the support from the nutrition team and the homecare company, I had a lot to thank my work insurance for, who covered my training on energy management, provided support and advice throughout my recovery. I was also incredibly fortunate to have the best manager in the world, who was always understanding when I was not able to stick to the original plans of gradual working hours increases and we had to do multiple revisions. He continues to be very supportive when I need to take a break and have a yoga Nidra (even if it does turn into an afternoon nap quite often), so I can
continue to be at my best at work.

My office work was not the only part that I had my eyes set on. As a yoga teacher (and now a fully qualified yoga therapist), I could not imagine life without teaching, without working with people and using yoga in a therapeutic way. In fact, my own conditions and the PN journey are helping me to be able to support others better. It might be easier when you don’t need to explain what a tube or a central line is or what either is used for. I continue to teach online every week offering others (and myself) an oasis of calm and time to oneself.

This year I piloted an online yoga class for PINNT members. It is a simple class of gentle movements, breathing exercises, breath observations, and short meditations. All done on a chair, to their own abilities. Yoga is not a competition, it is not a race, it’s simply the time to slow down and to notice your own body. It can be hard at times, especially when we can all feel from time to time (or often) being let down by our bodies. What helps me in those moments is to remember – the body is doing the best it can. It always has done the best it can. Then I do feel immense gratitude and appreciation. So how can I help my body? Are there ways in which I am hindering it? With yoga classes, that’s the time to pause and to find out.

That's just part of professional life. As much as I am passionate
about yoga, I was very keen to come back to

my pre-illness activities that I loved. At first, it seemed impossible and a huge mountain to climb when I could barely walk short distances and struggled with pain in my feet, and, of course, fatigue. A doctor told me I would never walk more than three miles a day. I did not believe it for a second, but it did take a long time (over a year) to get to the point where I could hike for up to six miles a day for a few days a week. And eventually I managed to get to ten miles on some occasions. The first time it happened, it was truly a day for celebration.

So how does my ‘new normal’ look like? I am back to my pre-illness hours at work in the office, with a modification that I only occasionally go to the office, but mainly work from home. This enabled me to plan my day easier and allows more flexibility for when I start and finish my PN. I teach yoga, have some yoga therapy sessions. I hike, I read (or listen to audiobooks), I knit, I cook - all the activities I loved doing before I got ill. And I travel. The only thing that's changed, I have many more travels within the UK that give me much more flexibility (and less planning, fewer phone calls to make) in how long to stay somewhere. And because of PN, I now actually have the energy to do things I love. My life is now full of joyful moments with the activities and people that I love with PN enabling it all. It has given me the life I would not have had otherwise.