I am constantly reminded that my life is different.
I look back in time, to years gone by and remember just what I’ve been through.
Things are different. So much has changed.
Not only is my own life different but I am different too.
I’m learning to not let the small things bother me as much as they used to. I have had to accept this since I was diagnosed – a chronic illness forces you to take care of yourself, in ways you wouldn’t have before. You become more careful and calculated, abit cautious from keeping onto of your symptoms; its not just fatigue its mental stress trying to keep on top of your illness. No wonder we are all tired most of the time. No wonder we take pleasure in the simple things; because those simple things give us the most joy.
I have new priorities since getting my ostomy.
I am my number one priority.
The shyness I once had over my illness is gone. It’s been replaced with a physical, breathing thing called Pricilla: my stoma.
I have to look after her. I need to look after my body in order to keep her in the best health. To avoid problems, to avoid admissions, I look after her. I listen to her and give her what she needs, what she craves. That never happened when my colon was there; that bastard was sucking all the life and energy out of me, throwing my body out of complete whack.
It also means I have to stay on top of things; I can’t have a day off from my illness. The thing is, I don’t want a day off. I want to look after myself these days, because I feel as if I am finally physically capable to do so. There were many days pre-surgery when I just wanted to give up. My disease was slowly killing me and I did not want to fight it anymore. I needed someone else to do it for me; I begged for help. And once I did, I got a second wind: I stood up and decided to take the ostomy surgery and move forward with my life. Big, life altering surgery that has paid off big time.
I’ve got through my own personal hell of shit to get here and I won’t let anyone tell me that that is not valid. I won’t let other people’s judgment of me or my situation stop me from being myself, from looking after me, and making myself a priority in my life. I am doing what is best for me.
What does that mean exactly?
- Keeping hydrated: so important. A good fluid balance is key to regulating ostomy output, avoiding leaks and avoiding dehydration. More fundamental in ileostomies due to the removal of the colon. Having a target to achieve during the day keeps me motivated too. And I notice a huge difference if I don’t meet it.
- Eating well: I have small meals throughout the day. I’ve tried to go back to a ‘normal’ routine but I find eating later and heavier in the evenings has consequences I don’t want – leaks, sore skin, broken sleep, active bag changes. Getting the right nutrients is key too – having my fruit and veggies, proteins as well as my salt an sugar keeps everything balanced.
- Exercising: Adding onto eating right, exercise is key too. Keeping my weight stable instead of fluctuating keeps my ostomy bag fitted to my abdomen. It also provides a release of endorphins and is good for mental health. There is lots of support wear and advise for exercising with a stoma.
- Living my own life: Not letting others achievements get me down has been a big learning curve. But I have embraced my own personality and experiences to carve out my own life; improving on what it was before my ostomy and removing negativity too.
Learning this hasn’t been easy and I am sure it will keep going for a while to come, but it’s teaching me a lot about myself and how I see things these days. Sure, there are days when my ostomy is a pain and when living with an illness is downright exhausting but I’m taking the rough with the smooth. And hopefully, it gets smoother as my confidence grows.