‘I probably won’t outlive my sister or may not be able to see my children grow up. ‘Do you feel like a burden?’—Yes, I do’: Woman with Cystic Fibrosis details journey, ‘If you search for the silver living, you’ll always find it’

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“I recently heard the most real thing I have ever heard: ‘You cannot have what you want until you want what you have.’ It’s hard to know what to put on the first few pages, but I suppose I should start at the beginning. I was born on July 13, 1998, at 8:12 p.m., weighing 6lbs and 2.5oz., in Shropshire, England. And for the next two or so years, I didn’t get much bigger.

Unknown to us all, I wasn’t absorbing anything I ate, and so, as a result, I was just rolls of baggy skin. I was a docile, calm baby. I never cried, I slept from 7 p.m. to 7 a.m. from a few weeks old; I was every parents’ dream…realizing now it was because I had no energy to move, let alone scream. But other than this I was a happy, normal baby, so my parents had nothing to be concerned about. All was a mystery. Coughing was put down to fluff from various teddy bears. Lack of crying? Blessed with a happy baby. Dodgy poos? Typical baby. Then came the day which changed mine and their lives forever.

I was diagnosed (ooh, first scary word people don’t tend to like) with Cystic Fibrosis (this is the only time I will ever refer to it as such, I will refer to it only as CF) when I was 2.5 years old, on January 4, 2001. If you ask my parents they’ll say, ‘It was the scariest day of our lives.’ And I can honestly say from this moment on, upon any of my achievements, however big or small, the first words out of my dads mouth were as followed: ‘If someone handed me a crystal ball and showed me what you would be like today I would have snatched their right hand off.’

Courtesy of Matilda Herbert

Most people don’t actually know what CF is and if you saw me, you couldn’t tell. Which is great for the most part. It affects around 10,400 people in the UK, 70,000 worldwide, yet 1 in 25 of us carry the recessive gene which causes it. Basically, CF is made up of two recessive genotypes which come in multiple different forms. Most people have none. If you have just one of these genes then you are a carrier, and if you have both, then ta-dah, you’re like me and have CF. My CF is made up of Delta F508, a common genotype, and one rare one, N1303K. Let me tell you something: LIFE THREATENING DOES NOT MEAN LIFE DULLING. I have and am sure I will continue to have a brilliant life I’m proud of, one I have worked hard for and enjoy.

CF isn’t a bad thing. It’s got so many negative connotations and yes, maybe it has negative effects on my health, but on my character and personality I think the opposite. So, in light of hopefully trying to get people to understand the fact I don’t mind having CF and the worst bit is actually how people make assumptions, I have tried to do things throughout my life to challenge people’s opinions. Obviously there are good and bad days, like anything. Good being good, and bad being really bad, but never be surprised when someone with CF is positive and upbeat, because I can guarantee you 75% of them are. So don’t say, ‘But you’re so happy and positive,’ (I forgot I should be crying all the time because my life is so depressing and horrible in your view…wait, NO IT’S NOT)it’s my life and only I get to decide if it’s horrible.

Courtesy of Matilda Herbert

Having CF doesn’t make me bed bound, (yes, it does now more so than it ever has before, but this is natural deterioration and I have accepted it), but for the first 20 years it didn’t. It doesn’t make me boring, and it doesn’t make me strange, it just makes me different. Who wouldn’t want to be different? Yes, on certain occasions, when I have my IVs in I do tend to be off my feet, but other than these instances I try to be active when I can. Again, now I can only walk short distances without breaking. I would say the last couple of years have been the hardest. Having to adapt to such a drastic change in how your body can cope now to how it used to because of a significant lung function drop is hard. I am not as active, I struggle for breath during most days, and I have to plan socializing far in advance so I’m able to save the energy and get enough rest. These things have come with time and age.

Courtesy of Matilda Herbert

IVs, or intravenous antibiotics, are treatments I tend to have every 2-3 months for a 2-week period. During this time, medicines are pumped into my body through tubes three times a day for a few hours, which tends to make me groggy, tired, moody, and an absolute emotional wreck…so, thanks to those who manage to deal with me then. We’ll go into more detail about these another time.

Courtesy of Matilda Herbert

This is so different to what I would have said two years ago. It’s one of the most daunting things about CF; you’re a ticking time bomb and you don’t know when it’s going to go off, and, realistically, things go from good to bad and bad to worse very quickly. You can go from up and about to needing a transplant in such a short space of time, and as much as it can seem scary, it’s something you need to get to grips with as a child and understand your 2-hour treatment routine has to be done without fail every morning and night. You also have to give up the feeling of control of your own body, accept when you play dolls you might not get to do it for real one day, and when you plan weddings with your sister you know to always keep in the back of your head it’s okay if you don’t get to do that, either.

When you think about things like this, you think it would be harder for a child to accept, but with me it has been the other way around. I was fine about everything and I sort of still am, but I don’t want to die yet. I have finally found the person I want to have a family with and to do all the ‘normal’ things with, like buy a house, go out for food, get married, buy a dog, go on holidays, the usual, and now because it’s all so close to being a reality, I have so much more to lose. This is scary and it can turn your head into a dark place very fast.

Courtesy of Matilda Herbert

I’ve always accepted and taken in my stride the fact I probably won’t outlive my younger sister or may not be able to see my children (if I have them) grow up. And for years I told myself it’s not something to fear and it doesn’t bother me in the slightest, but it’s only when certain things or people come into your life you realize how much you don’t want this to happen. Time is valuable. For me, it’s more valuable than anything else you could have, now more than everI am 22, 12 years past what we were expecting, many years off what we are now hoping. Money, clothes, nice houses, nice foodyou can have all of it, but if you don’t take the time to appreciate it all and take the time to look at the person you’re sharing it with and smile, then what’s the point? Over the years, I’ve tried my hardest to be generous and not take anything I have for granted. You can see your glass either way, half full or half empty. It’s really up to you.

Courtesy of Matilda Herbert

Over the past few years I’ve been struggling with feeling positive or happy. I’ve been at the lowest point I’ve ever been in ages, and although I try to hide it, very few people in my life have actually seen behind the curtain and helped me. I am not a massively emotional person, but I have broken down in public, social situations, and behind the scenes one million percent more than usual. It’s very easy to fall into a trap of feeling lost and worthless when you feel like you don’t contribute anything. I currently am not healthy enough to work, so I am unable to contribute financially to me and my partner’s life. I am unable to attend many social situations, and at the end of the day, I have hardly any energy to enjoy the little time I do get to do anything. You begin to feel like there isn’t any point and it all starts to swallow you up bit by bit.

In reality, you need to accept your limitations and accept the people who have chosen to love you and be with you, chose you knowing all of this, and whether I feel guilty about it or not will not benefit me, only drag me down further. Once I started to tell myself this more, I began to feel happy again, and lighter (I don’t mean weight), like there was a darkness pushing down on my chest and shoulders filling me with panic, anxiety, and hate pretty much six out of seven days a week. It’s felt like a constant battle, however, this month has been a massive turning point for me. I feel motivated and excited about things again.

‘Do you feel like a burden?’Yes, I do. When things start to go wrong or I’m not doing as well as normal, my state of mind changes dramatically and I am negative about myself, my relationship, my futureall sorts, and this would drag anyone down. So when I’m down, I tend to project all of it onto my partner. Sorry! When I am in the hospital, or need treatment, it’s like it’s ‘expected’ for my partner to be there/help/administer all sorts, and the pressure must be huge! Like, why should he have to go through it as well as me? Why should I put all this on him? He’s sucked into it all too. He may not have CF but he lives a ‘CF life.’ Something he made me realize is, ‘It’s OK if the only thing you did today was breathe.’

Courtesy of Matilda Herbert

Through no fault of their own, people generally take breathing for granted, not on purpose but because it doesn’t cross their minds, they’re basically oblivious. And maybe I did start to take it for granted and start to think just breathing wasn’t enough, but now it’s changed. Think about it…when was the last time you woke up and had to consciously make the effort to think about taking your first breath? Without meaning to stereotype, most of you probably don’t, which is great…it comes naturally to you. I breathe heavy, I breathe short, and I breathe fast. I know because I count every breath I take. I know how many breaths I take in a minute. I know how it differs when I’m in a hot place to a cold. I know how it gets worse when I lie down from when I’m standing up. I know how I can not sleep flat on my back or lying on my front, but only with two pillows under my head, lying on my side with all windows open and a fresh air supply. Only with a water bottle in my arms and nothing near my face or neck. I didn’t choose all these things, but I learned without these I can’t breathe, I can’t sleep, I can’t relax.

As much as you feel selfish for demanding all of these things to happen so you are able to rest, over time I came to realize it’s okay to be selfish. Sometimes you have to be selfish to be safe. A hard pill to swallow for me as I can’t stand selfishness, but I’ve learned to adapt and ask for things to make it easier. It doesn’t mean I am taking from others, it means I am enabling myself to have what others can normally. I’ve always been told by my doctor having CF is like breathing through a broken straw. That’s what my lungs are like. Everyone with CF goes through things differently and I’m certainly not going to claim what I say is gospel. But I am saying I really do believe if you have a strong, positive outlook on everything, smile at the smallest things and always look for the silver lining, you will always find one. However small it may be, and however hard it may seem to find, I always look for it, and I am so glad I do.

The small bit of happiness and the grateful feeling you get from appreciating the small things in life makes even the darkest things a joy! If you are having a bad day, who is the angel looking after you or checking in? If you can’t go out when your friends can, get some much needed beauty sleep. If you feel like life is unfair for you, or you don’t have the money to buy the new dress you like, remember all of the times you’ve bought stuff before, or you have a roof over your head, a family, food. Every day you wake up, it really is okay if the only thing you did was breathe. Notice it, be grateful for it, and cherish it. You never know which may be your last. I tend to think of life as a glass, and in it is my life so far, everything good fills it up. Now, think of the glass as being half full. Some people might look at it and see it’s half empty, but there is evidence to show applying positive words and phrases and implementing them into your daily life help to boost and look after your mental health, providing you with a healthy look on life.

I love routine and I always have. I don’t know whether it’s because I like to feel as though I have some kind of control over something in my life, or because I have felt so out of control over my own body for years. However, the point I’m trying to make is you shouldn’t let CF and a routine define your day, week, year, or life: instead, just let it help you plan it. A routine is great and we all have some sort of version of them, whatever it may be, but a routine is there to be adapted and to allow you to keep organized and in check while doing all you want or need. I do roughly 3-4 hours of treatments each day, split between morning and night, which vary from nebulizers, airway clearance, 50+ tablets, injections, and physio.

Courtesy of Matilda Herbert

My current everyday morning routine has been pretty much the same for over 10 years now. It goes like this: wake up, inject the correct amount of insulin for breakfast, do my nebulizer (Dornase Alpha, 5-10 minutes), have the same thing for breakfast each day, as we know exactly how my body handles it, do Acapella (physio) for about 35-40 minutes, and usually 140 breaths at various depths and strengths, do my antibiotic nebulizer (Colomycin, 15 minutes), 4 puffs of inhaler, sterilize all of the above so it’s ready to be used at night, worry about climbing up the stairs to try and get ready, and continue my day. Anyway, I have never been very good at talking about feelings or what I feel uncomfortable about. I remember when I was little, my psychologist told me to write them down, use words or scribbles, even draw my mind, and with it my feelings would come out. And for me, it worked. For a while.

It then became a problem because I hid behind the paper and the little book in my wardrobe no one knew existed. Any time I had an issue, whether I felt it was because of myself or another person, it would go in the book and I’d bottle it up. It made communicating my feelings difficult, unless I wrote them in a letter (I still do this, but not as much as I used to). It got to the point where I couldn’t explain if I felt like something was wrong or why I was upset, so I’d pretend I wasn’t, write it all down when I got home and pop it away, or torture myself for hours thinking I was an issue which couldn’t be solved.

This made all sorts of relationships with many people very difficult. Only recently have I been able to start to overcome this. The last few years my use of social media has expanded beyond Instagram and YouTube, allowing me to express emotions, feelings, and show people who may not understand. It can be an isolating world sometimes, but always know you are never alone and whether you are the one helping or the one needing it, there’s always someone willing to offer you the support you need, you just have to find them.”

Courtesy of Matilda Herbert

This story was submitted to Love What Matters by Matilda Herbert. You can follow her journey on Instagram and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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