A bitesized blog

I have not posted here the past two weeks and it has been frustrating me. My time is filled with transplant-related things to do and yet sometimes my space feels kind of empty. The emptiness is not necessarily a bad thing. It swells with love and gratitude often and only on occasion dread arrives.  I am two months and one week on the active transplant list. My main objective during this time was to take up exercise again so that my body is as strong and ready for fighting its way through transplant as it can possibly be. It’s also a requirement of being listed.

It has been a few years since I have been able to run or swim because of recurring lung collapses and infection issues. Frequent exercise with weights used to make my lungs bleed. Somehow once I started pulmonary rehab two months and one week ago this issue mostly disappeared. It popped up in light ways that were not too tricky to deal with. Exercise is so important. An open chest can help the lungs pop out easier during surgery and facilitate a better recovery because the body is going in strong. Muscle and strength are lost with the combination of surgery and steroids on the body. so I have to give myself the greatest advantage going in. I had a fantastic few weeks in rehab and the pleasure of lifting weights again and feeling muscles I forgot wake up and demand to be recognised was a joy. But during this time I had two courses of intravenous antibiotics and after the second course, my lungs had some bleeding again. I am still doing all I can but it is a modified routine. My exercise goals are a movable target that flex up and down depending on how my body is responding. This is a magic trick that people with CF have fine tuned. We deal with what we have to as it comes hurtling at us and are experts at it. I am currently trying out different exercises and always searching for new ones that might work better for my body. Next week I am trying out a restorative yoga.

I look forward to the day post transplant when I will work out with ease. I want to build my body with my new lungs to the best it can be. HULK ORLA! My goal is to be able to rock climb. Somehow this will happen. (I’ve put it here so now I have to make it so..!) I feel very positive about my life right now despite my limitations so although I am waiting for my transplant it is easy to forget my situation. That probably sounds strange given I wheel a tank half my height around everywhere I go. Sometimes my Mum will say that someone has been staring at me while we’re in the grocery store or out walking but I never really notice. I don’t really care. What on earth could be so alarming? We all have our things but some are not worn on the outside.

There will always be people who don’t get it.  The most joyful, motivating elements of the past few months have been those that do or who try hard to. That’s my friends, my family, my professors, my university, my medical teams and every New Yorker who gave me a smile or a motivational one-liner while waiting to cross the street or while hanging out in the vegetable aisle. Immediately moments of mundanity are transformed from placid grey into an explosion of glitter that sticks to my clothes and trails on my feet for the rest of the day.


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