Woman Feels She Is A Burden In Her Relationship But That’s Definitely Not True.
She is a 22 year old girl. Let’s start from the beginning. She was born on 13th July 1998 weighing 6lbs and 2 ½ Oz, in Shropshire, England. And for the next 2 years she didn’t get that much bigger. She wasn’t absorbing anything that she ate and so, as a result, she was just rolls of baggy skin.
She was a docile, calm baby that never cried, slept from 7pm-7am from a few weeks old, every parent’s dream…..realising now that was because she had no energy to move, let alone scream. But other than that she was a normal baby so her parents had nothing to be concerned about. Everything 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 that changed her and their lives forever.
She was diagnosed (ooh! first scary word people don’t tend to like) with Cystic Fibrosis (this is the only time it will ever be referred to as. Henceforth it will be referred as CF) when she was 2 1/2 years old, on Jan 4th 2001. If you ask her parents they’ll say it was ‘the scariest day of their lives’.
Most people don’t actually know what CF is. It affects around 10,400 people in the UK, 70,000 worldwide, yet 1 in 25 of us carry the recessive gene that causes it. Basically CF is made up of 2 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 (1 in 25), and if you have both of them, then ta-dah you’re like Matilda and have both CF made up of Delta F508, a common genotype and the rare one: N1303K.
Now Don’t just Dare to PITY Matilda! Matilda will never say, “Emotionally I’m done! Mentally I’m drained! Spiritually I feel dead!” On the contrary she says, “LIFE THREATENING DOES NOT MEAN LIFE DULLING.” She has and she will continue to have a brilliant life that she’s proud of, she has worked hard for and she enjoys it.
CF isn’t a bad thing, it’s got so many negative connotations and yes, maybe it has negative effects on her health but on her personality it’s the opposite. So she doesn’t mind having CF and she has tried to do things throughout her life to challenge people’s opinions. Obviously there are good and bad days. Good being good, and bad being really bad but never be surprised when someone with CF is positive and upbeat. It’s our life and we have to decide if that’s horrible.
Having CF doesn’t make Matilda bed bound. It doesn’t make her strange, it just makes her DIFFERENT. Who wouldn’t want to be DIFFERENT? On certain occasions, when she has her IV’s she tends to be off her feet but other than that she tries to be active when she can- although she can only walk 10 metres without breaking. She struggles for breath during most days. She has to plan socialising far in advance so that she’s able to save energy and get enough rest.
IVs – Intravenous Antibiotics is a treatment she tends to have every 2-3 months for a 2 week period. During this time, medicines are pumped into her body through tubes 3 times a day for a few hours which tends to make her groggy, tired, moody and an absolute emotional wreck. That’s one of the most daunting things about CF, that you’re a ticking time bomb and you don’t know when it is going to go off and realistically, things go from good to bad, and bad to worse very quickly.
You have to accept that when you play dolls, you might not get to do that for real, one day and when you plan weddings with your sister, you know to always keep in the back of your head that it’s ok if you don’t get to do that. When you think about things like that, you think that it would be harder for a child to accept that, but with Matilda, it has been the other way round. She was fine, about everything and she didn’t want to die yet and she has finally found the person she wants to have a family with and do ‘normal’ things like buying a house, going out for food, getting married and now because it’s all so close to being a reality, it’s scary that can turn your head into a dark place very fast.
She has always accepted and taken in her stride the fact that she probably won’t outlive her younger sister or may not be able to see her children (if she has them) grow up. but it’s only when certain things or people come into your life that you realise how much you don’t want that to happen. Time is valuable, for her it’s more valuable than anything else she could have, now more than ever – she is 22, 12 years past what they were expecting. Money, clothes, nice houses, nice food, you can have all of that 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, she has tried hard to be generous and not take anything she has for granted. She isn’t an emotional person but she broke down in public, 1 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. She currently is not healthy enough to work, so she is unable to contribute financially to her and her partner’s life. When asked “Do you feel like a burden? “she said,” Yes, I do.”
When things start to go wrong or she’s not doing well her state of mind changes dramatically. So when she’s down, she tends to project all that onto her partner. Why should she put all this on him? He may not have CF but he lives a ‘CF life’. Something he made her realise is that: ‘It’s OK if the only thing you did today was breathe’
People generally take breathing for granted, not on purpose but because they’re basically oblivious. 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. It comes naturally to you. She breathes heavily, she breathes short and she breathes fast. She knows that because she counts every breath she takes. She knows how she can not sleep flat on her back or lying on her front, but only with 2 pillows under her head, lying on her side with all windows open. Only with a water bottle in her arms and nothing near her face or neck. She learnt that without these she can’t breathe, she can’t sleep.
As much as you feel selfish for demanding all of these things happen so you are able to rest, over time she came to realise that, it’s ok to be selfish. Sometimes you have to be selfish to be safe. A hard pill to swallow for her as she can’t stand selfishness. She has always been told by her doctor that having CF is like breathing through a broken straw. That’s what her lungs are like…….Hmmm……Enough of negative thoughts!…..Let’s breathe in some positivity!
That 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 that much needed beauty sleep. If you feel life is unfair for you, or you don’t have the money to buy that new dress you like, remember the times you’ve bought that type of stuff before, or that you have a roof over your head, a family & food. Every day you wake up it’s really is ok 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.
She loves routine. However the point she’s trying to make is that you shouldn’t let CF and a routine define your day, week, year or life, instead just help you plan it. A routine is there to allow you to keep organised while you do all you want to do. She does roughly 3-4 hours of treatments each day, split between morning and night, which vary from nebulisers, airway clearance, 50+ tablets, injections and physio.
Her 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 that day, Do her nebuliser (Dornase Alpha 5-10mins), Have the same thing for breakfast each day as she knows exactly how her body handles it, Do Acapella (physio) for about 35-40 mins and usually 140 breaths at various depths and strength, Do her antibiotic nebuliser (Colomycin 15 mins), 4 Puffs of inhaler, Sterilize all of the above ready to be used that night, worry about climbing up the stairs to try and get ready and continue her day.
When she was little, her psychologist told her to write down, even draw in her mind, and with it her feelings will come out. It became a problem because she hid behind the paper and the little book that no-one knew existed. Any time she had an issue, it would go into the book and she’d bottle it up. This made relationships with people very difficult.
Only recently has she been able to overcome that. Her use of social media has expanded beyond Instagram and Youtube, allowing her to express her emotions. This month she started a groundbreaking drug, which she felt changed her body within 2 hours of taking it. This fills the CF community with hope. She enjoys helping other families to adapt and learn what to expect from CF, through the media, especially showing people her journey with Kaftrio the new drug.
It can be an isolated world sometimes, but always know that you are never alone. Whether you are the one helping or the one needing it, there’s always someone willing to offer you the support you need or take the support you give. You just have to find them.
For you, MATILDA- It’s a daily struggle being in pain on the inside while you look fine on the outside! You are given this life MATILDA because you’re strong enough to live it!
GUYS! THE STRONGEST PEOPLE are not those who show strength in front of us but THOSE LIKE ……”MATILDA”……. WHO WIN BATTLES………….. WE KNOW NOTHING ABOUT……………EVERYDAY!