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My First-Year Experience with LIT Outdoor Club

To begin, I am the girl with multiple, less common complexities. I take 60+ pills a day and vape more than your folks did in pubs before the smoking ban. I inject just for kicks (jokes, I’m diabetic). At night, I am fed through a tube in my stomach and antibiotics are not just a crash course of amoxicillin but rather an intravenous cocktail of aggressive antimicrobial drugs via a method often used in cancer patients.

For most people at least, breathing is an effortless bodily function. It is not effortless for me and it gets increasingly difficult as I age.

To give an idea of my character, my dad said something about me once, that I’d go to “the opening of an envelope”. It wasn’t too long after that conversation with him that I found myself destined for Japan with probably less than a hundred quid in my bank account and a heavily bleeding pair of lungs. I was in A&E (again) with less than twelve hours to go until my flight. Typically, they admitted me and the doctor couldn’t see me anyway. I politely told the junior to inform my consultant that unless he too was boarding a plane to Tokyo (in at that point 9 hours), I would see him on my next visit. He said my consultant phoned and said to let me go as I knew myself best. And he was right, I did know. I managed fine and enjoyed my trip.

Of course, I didn’t know at the time of booking my ticket that a tonne of crap was going to try and prevent me from going, and it wasn’t the first and it wouldn’t be the last time. But I didn’t let it because being honest, after I piss and moan for a bit, forcing the chips up when they’re down is the only way I know how.

Fast forward and rewind to two weeks ago, I struggled to last 20 minutes on a treadmill at gentle pace without incline and last week I climbed a mountain, both literally and figuratively. That’s a small milestone for me in terms of my health as it was ten times harder for me than the twenty-two others that trudged on like mighty Trojans ahead.

“A light walk” said Alan referring to the mountain we were about to hike on the last event of the year after spending the morning on surfboards in the Atlantic Sea (I sat that one out as I couldn’t risk getting my port wet and infecting it). Yeah right. It was not a light walk (it was a trap!). I did not find this to be a simple task and I would not have had any satisfaction if it were. It was a contest of my determination and will and more than anything, that is how and why I made it to the top. But instead of my lungs being a daily limiting factor, they are the motivator in what keeps me going.

Exercise is a key part of being fit and healthy. It is an endorphin release with greater power than any drug when the heart gets pumping and improves oxygenation and overall lifespan to those who make it a regular habit. It is fair to say that exercise is as important if not more so than having a good breakfast in the morning, but I remember the days where it was totally discouraged for people like me with cystic fibrosis. In my years of secondary school, I was instructed to sit on the balcony during P.E classes while I watched my peers actively participate.

Having a chronic primary lung disease, I’m not exactly blessed with mounts of energy. I’ve been through a lot in my life and I am constantly learning and growing, through friendships I’ve made and decisions I’ve taken on my own when the odds were stacked against me.

Before the final event dawned which was a weekend in a holiday village in Castlegregory, I was admitted to hospital as my usual luck would have it when I have plans that I’m looking forward to. I felt hard-done by as my whole life has been one thing after another passing me by and now it was happening again, but I put the work in and upped my game in those few days to get out of there, and I did, barely. It meant I had to take half a hospital home with me to equip me for a further two weeks while I finished the course of IVs, but I was happy to do that and lucky to be given that option at all which meant a lot to me as I still had a chance of going on the trip.  I was fortunate in that a new antibiotic accounted for my ‘bounce back’ quicker than I’m used to. I don’t know if that’s coincidence or evidence that everything happens for a reason but for the sake of looking on the brighter side I’ll go with the latter. I didn’t think in a million years I’d drag an IV with me through the Kerry mountains. I didn’t even know I could take breaths that deep and feel as good as I did when I drew them.

Continue reading “My First-Year Experience with LIT Outdoor Club”

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Do not let our cries fall on deaf ears

It was a Saturday in June and I was in prompt need of treatment like all the other people in the A&E department that night. There were all kinds of ailments and injuries, and not all of them were physical, or treated with respect to their nature.

Anybody familiar with the horror of A&E admission knows that if you find yourself admitted straight to a cubicle and not head-to-toe with someone struck with the latest killer flu, you are the golden apple of an unlucky bunch. Feeling relieved to be a golden apple, I was wheeled to my cubicle where I got out and lay on a trolley without a pillow for what lasted to be 5 days before I was transferred to an actual bed on a ward. The first night was uncomfortable and the events of that night heavily impacted on the duration of my admission.

With aching chest pain and an urge to sit up on a broken trolley, I called for the nurse to assist me and disconnect me from my 10’ o clock IV that had been delayed and given at twelve. It was beeping impatiently and I had already silenced the alarm more than my patience could tolerate in the pain I was in despite having had my fair share of opiate relief. I rang the bell which was far from my reach and the nurse finally came. In those 30 seconds that I waited for her to come, I heard a man crying for help. He asked that somebody give him ‘just five minutes’ to talk as he felt ‘very suicidal’ and ‘feared what he might do’. And while there were the usual noises of a busy hospital environment, drip alarms and phones ringing, the sound of the sobbing man drowned them all out. His words chilled me.  When the nurse did come to me, I could see the man sitting on the line of cold, hard chairs opposite the other side of my curtain. He wore a dirty brown jacket and spoke with a British accent. The nurse closed the curtain behind her when she left and I was sitting on the edge of my trolley as it hurt too much to lay my head back onto the flat surface.

All I could hear amidst all the madness of everything else was the man and what he kept repeating. ‘Please, please. I need to talk’, ‘Just 5 minutes is all I ask, I need to talk to someone’, ‘Please’.  I thought about drawing the curtain back and being the listening ear that he needed, but I was drowsy in a lot of pain and didn’t know how to handle a person in the state of agony that he was. A different nurse passed by and shouted furiously “WHAT?! WHAT DO YOU WANT?! There is no-one here to listen to you now. You will have to wait ‘til Monday”. I felt even more physically sick than the medication had caused me to feel, and an overwhelming surge of shame and anger for the lack of compassion and genuine concern in the woman’s tone and remarks. I was shocked and disgusted firstly at the way any person was spoken to like that but a person at high-risk of taking their life was treated in this manner by people he probably thought he was in safe hands with, because, why wouldn’t he think that? I had thought that, after all. It had just quietened down in A&E and most people were in tranquil sleep, even the ones that had been roaring screams of pain and torture less time ago than the hour that had lapsed between them. I realised then that I was the only person that had heard what I heard.

There should have been somebody on call to deal with a sensitive and alerting situation of that kind. I drifted off to sleep and woke that morning to the familiar sound of the drip alarm going off again. I knew that it had to be shortly after 6am and the nurse came to free me. I pulled the curtain back of the cubicle I had uncomfortably spent the night in and made my way to the bathroom around the corner. Memories entered my head of the man as I walked by the bench of chairs that he sat on but I noticed he was not there and I couldn’t see or hear him anywhere in my radar. Given the busyness of A&E on any normal day, I knew it was unlikely he had got a bed somewhere, seeing as I hadn’t, and after the way he had been spoken to I doubted any shred of kindness was the reason he had left. There was a strange vibe that I couldn’t place my finger on but intuition told me that something wasn’t right and my heart sank when I saw a body covered up being carried out across a stretcher before breakfast time that morning.

The weeks that followed were accompanied with sadness and my usual recovery time took longer and involved some disappointing setbacks.

I was weighed down by a heavy feeling in my heart and couldn’t talk about it with anyone.

Continue reading “Do not let our cries fall on deaf ears”

My Wish at the Trevi

Earlier this year, I was lucky enough to find myself in Italy after my first hospital admission of 2016. A little part of me even feels sad that I say first in full confidence that I knew there would be more than one because every year since I was 9 has followed the same general pattern. The opportunity arose and like a bee to honey, I went straight for it.

Cystic fibrosis or ‘CF’ for short, is many medical terms. But more than anything, it’s getting on that plane and going on that trip if you think you can, with or against medical advice.  It’s focusing on NOW, putting all your eggs in one basket “just in case” and hoping either way that you have enough days to chase them one by one.  CF is growing up before your time or never growing up at all. You know this from early childhood and right through adolescence but it doesn’t resonate until that first gruelling hospital stay. I don’t mean the one your parents remember  when you were four, I mean the one when you were 13 and wondered how you would respond to your friends curious questions after you returned from 2 weeks of having not been in  school. I recall one of my granddad’s great sayings (he had many) “If you don’t have what you like, get to like what you have!”. I really did want that motto to work for me and so I tried that for a while. I tried to like missing winter tests and awkward biology experiments where the rest of the class would partner up and I would look around wishing the day would be over and the ground would swallow me. I let on that I was fine with my exemption from P.E because I was fragile, but of course I was not. I didn’t like sitting on the balcony upstairs doing homework whilst everyone my age was fit and having fun. I was a teenager with all the paranoid and self conscious thoughts of a regular teenager except I was living a very irregular teenage life. Orkambi now could mean kids don’t have to go through this anymore. It could allow them their teenage years, their days of mischief! The ones I was robbed of and can’t get back.

Continue reading “My Wish at the Trevi”

I. will. simply. breathe

CF (cystic fibrosis) is a genetic disease that primarily affects the lungs and gastrointestinal tract as well as the liver and reproductive system. If two carriers of the gene have a child then the child has a 25% (1 in 4) chance of being born with cystic fibrosis.

I have been asked many times about my illness, but when asked on the spot I can never really say enough about it to sum it up in detail. Even the people I hold closest and dearest to me don’t know the seriousness of its impact on me, and they’ll never know but I hope this helps the person reading to at least understand a little bit about it, and be less uncomfortable around the topic of chronic illness. If you know someone with cystic fibrosis maybe it will help you to have an idea of what they are going through, the fears they are facing that you know nothing about and the reasons they cancel plans last minute. If you are feeling low, maybe my story will help you to see that there is something to be happy and thankful for, even in the worst situations.

Hell is a scary place to be on your own, feeling lifeless, in a constant fight with your body. This is the norm for someone with CF. Every day is a struggle for us just to breathe. Imagine how it might feel if you had to bring a spit cup to bed with you at night and you couldn’t sleep with less than 5 pillows because if you did you’d probably drown in your own mucus. Now imagine how terrifying it would be to not know if you’ll survive long enough through the night to be woken by the light of the next day, to hear the sound of your lungs crackle like a bowl of Rice Krispies and to spew dangerous amounts of blood from your mouth and shrug it off like it’s no big deal. Exercise is not to lose weight but rather to maintain your lungs at the condition they’re in and hopefully even improve them, 2 to 3 hours of your day is spent voluntarily coughing up mucus so that you can breathe with a little more ease and you’re so exhausted afterwards that you collapse on the couch and spend another two hours sleeping when you’re done, so you forget to take the nebs you’re supposed to take and now your day is half over and you’re back to square one, coughing your lungs up again, and someone makes you laugh but you try your best to restrain it because you’re afraid they might end up on the floor. Imagine if you couldn’t tie your shoe laces without the aid of an O2 tank hanging by your side and knowing that little tank is your only real dependable in this world.

All you can eat without taking a fist of tablets is a fruit salad and a bag of your favourite Haribo cola bottles except you can’t have those either because the complexity of this disease means that you became diabetic when you were 15 due to your pancreas’ lack of function. So many weeks, sometimes months at a time are spent in hospital that it becomes a second home to you and you become so institutionalized that going home takes time to adjust to. When you eat and forget your enzymes, you suffer every consequence for ever having sinned in your life X10. You forcibly say goodbye to your friends without ever getting a chance to say the word. Imagine doing all you can and never seeing any result for the hard work you put in, being told to eat as much you possibly can of whatever unhealthy, fatty foods you like and never gaining a pound. That part sounds great, but it’s not. Most of the time you don’t have the appetite to enjoy it and when someone is constantly nagging at you to eat, it does nothing but put you off your food so it becomes a chore. You didn’t eat your house and home out of it today so you have to be fed through a tube tonight, and every other night except the one you insist on having to yourself this weekend so you can feel normal.

I was a healthy child but as I grew up I started getting sicker and having frequent hospital admissions. My teen years were a struggle and in a way I feel they were robbed from me. I’m not complaining about these things, after all this is the only life I have ever known and I happy that I am still well enough to be here typing this. In fact, it’s amazing. The reality is that cystic fibrosis is a degenerative disease that worsens with time and age. Life expectancy in Ireland for someone with cf is hard to predict, but people are now living well into their 30s and beyond. In the North it is it well into the 40s where facilities are better, and in Canada it is now 51.  Facilities in hospitals are hugely important to prevent cross infection and improve survival rates. But enough about statistics. I am not a statistic and there’s no point sailing through life thinking of the ifs, buts and maybes so I guess all we can do is take all that with a pinch of salt and get on with it. But nevertheless, the numbers are still there and all that it means is that there is an extreme shortage of organ donors in Ireland and people are dying because of it.

Continue reading “I. will. simply. breathe”