If you have read my blog About Cystic Fibrosis you hopefully have a general idea of what cystic fibrosis is: the problems and the treatments. However the textbook version and real life are very different! So I’ve decided to go through an average ‘good’ day with you!
Waking up is always a struggle. And I know what your thinking: ‘typical young person!’ However for me its slightly different. I always wake up tired. Not because I sit up on my phone in to the early hours in the morning; but because I wake up multiple times during the night to have a coughing fit.
The first thing I notice when I wake is how tight my lungs are and how desperately I need to do my breathing exercises to clear my airways so I can breath a little better.
Then I go downstairs to take my first of four nebulisers. The earlier I can fit this in the better. One nebuliser is DNAz, which breaks up the mucus in my lungs making it easier to clear. The other three are an antibiotic called Cayston Aztreonam (I will write more about this amazing drug which recently got approved for use in the UK) later! As its an antibiotic: doses must be taken 4 hours apart. Hence why the earlier I start the better. Otherwise its a struggle to fit all my nebulisers in to the day. Especially if I sleep in!
Next: breathing exercises – my most dreaded time of the day. If you think having mucus-filled lungs sounds disgusting; imagine how it feels! The point of the exercise is to clear the lungs making it significantly easier to breath. And as much as I hate doing my breathing exercises: it helps reduce the rattling, wheezing and – very attractive – coughing fits for the rest of the day.
Breakfast. I always try and fit breakfast in before the pills. Otherwise I instantly regret it while feeling travel sickness on the bus. However, unfortunately I am required to take about 4 enzyme tablets (called creon) before all food. (the number varies depending in the food and the fat content – the more fat the more creon).
‘Is it too early for chocolate?’ Is my initial thought. Of course, having Cystic fibrosis its always a good time for chocolate! Although I always suppose I should have something slightly healthier first, so start off with some cereal, then finish with a hot chocolate and chocolate.
Now the pills: medicine for acid reflux, vitamins, my digestive system, and antibiotics every day of my life. Not to forget the inhalers!
By this point I’m running late. I still need to have a shower, do my hair, make up and get dressed! Oh, and take my first Aztreonam nebuliser for the day!
By the time I’m out the shower I’m exhausted. Do I really need to look good? Is there anyone really to impress? However, usually I feel significantly better about myself if I do have my hair and make up done, so I do always try as it makes such a difference to how I’m feeling.
I then manage to cram in my nebuliser, then have to leave for the bus in a hurry.
Fortunately, my stop is one of the first for the bus, meaning I’m always able to get a seat. I often wonder what would happen if I couldn’t. I would probably have to stand. Although I have a disability, it cant be seen. Nobody would ever give me their seat. They would take one look at me and assume I’m fit – because I’m young, and my illness is invisible.
Unfortunately – my university campus is full of hills! That makes it difficult. Getting there is usually easy – its downhill. Getting back? That’s a bit harder. My irrational fear of the elevator doesn’t help either. So I always take the stairs up. When I get to the class I’m usually panting. So I always go to the toilet for a breather first when possible. When I’m out with someone close to me I always link onto their arm for their support, making it much easier to get around. If I’m on my own I can’t do that. And People I don’t know very well I can’t do that with, and feel too embarrassed to let them know how much I’m struggling.
I’m never in class very long when I start losing concentration. I’m already exhausted from the journey in. I have barely slept the night before. And I think all the medication has a negative effect on my memory and concentration. I usually try and sneak in a snack during the lecture at this point, as I always feel it helps.
By the time I’m home from university I’m exhausted. You would think my constant eating would have increased my energy. But all the walking on and off of busses, carrying around my bag, walking to and from the campus rooms, as well as attempting to process information has exhausted me! The first place I go when I get home is the couch! A rest is needed before I can tackle the stairs up to my bedroom. And once I do get the energy for the stairs I go up and put my pyjama’s on. I never wear clothes in my house if I’m honest. (Day time clothes are too restrictive as I don’t feel I can breathe properly and am always desperate to get into some loose fitting clothes when I’m at home).
I’m very fortunate I live with my parents, who are very supportive. My mum always makes me dinner for coming home from university. She knows when I get home I’m exhausted and basically incapable of making it for myself.
Following dinner I have a daily habit of watching the Simpsons. It’s just my routine. So I go up to my room, put on the tv then lay on my bed ready for the Simpson’s to start. (I fit another nebuliser in here too)! Unfortunately, I never usually get to watch the whole episode. I am so exhausted from the day I fall asleep. By the time I wake up, it’s sometimes a few hours later.
The sleep always helps. Although I wake up needing to do my breathing exercises again. And to eat.
I try to fit studying in in the evening. But sometimes I physically just cannot.
I then need to go take more pills, inhalers, do more breathing exercises and take another nebuliser. Then have a supper. All throughout the day I’m constantly snacking in order to keep my weight up. I also usually have sore stomachs – not having a digestive system that works properly can be pretty sore. However I never really let it show. There’s not a lot that can be done and I’m not one for moaning about it.
On the bright side – there’s always tomorrow – when I get to get up and do it all again!