The Reality of Cystic Fibrosis – Guest Post by Lucy

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Lucy

I’m Lucy, I’m 27 and I’m from Newport in South Wales. 

Lucy is looking at the camera, smiling. She has 6 clear stickers attached to her chest area, one sticker for each condition she has. The sticks read, Cystic Fibrosis, CFRD (Cystic Fibrosis Related Diabetes), ABPA (Allergic Bronchopulmonary Aspergillosis), DIOS (Distal Intestinal Obstruction Syndrome, and Pseudomonas.

Cystic Fibrosis

I have a genetic condition called Cystic Fibrosis and CFRD (Cystic Fibrosis Related Diabetes). But I also suffer with other little minor illnesses from having Cystic Fibrosis. The gene in my DNA which is affected by CF controls the movement of salt and water out of my cells, which means that my body produces sticky mucus (sorry if you’re eating!) around my body, particularly in my lungs. I was diagnosed with Cystic Fibrosis at the age of six weeks old after having a sweat test. I developed CFRD later on in my childhood when I was 11 years old. 

Common Symptoms

Cystic Fibrosis effects the body in so many ways. It doesn’t affect one part of the body as such. Which means, unfortunately, I experience so many different symptoms! But no two people with CF experience the same symptoms.

The main symptoms that I suffer with personally are lung problems. For example, I suffer with numerous chest infections, tight airways, wheezing and shortness of breath. When I do get a chest infection, it usually needs to be treated with antibiotics, either oral tablets or IV’s (intravenous antibiotics) over the course of two weeks.

My digestive system also takes a bit of a battering too! I sometimes suffer with DIOS (Distal Intestinal Obstruction Syndrome), which means I have bowel blockages from time to time which can be very painful.

CF can also affect the liver, bones and even fertility. In order to control symptoms, I need to take a lot of medication, do physiotherapy on my lungs and exercise as often as possible to stay well. Currently, I’m on twenty different medications.

Being a diabetic also means injecting myself with insulin once or even twice a day. I hate being a diabetic and it’s quite hard for me physically as it’s made changes to my personal appearance. 

But like I said, no two people with CF are the same.

Lucy is looking at the camera, using her inhaler.

How They Affect Me

Like I said above, all these symptoms have an impact on my physical, as well as my mental health. Sometimes the medications I am on bring side effects with them, which are never fun! But my attitude has always been to grin and bear it and know that the medications are doing their job and that the side effects won’t last very long.

Mentally, having a life-limiting condition like CF can be challenging and there are days where I just don’t want to take my medication, but at the end of the day, I would rather stay as well as I can by taking the medication rather than being rebellious and not taking them at all, resulting in me being very ill.

What Has Helped Me

Having that good support network around me has always helped. Having my family, especially my Mam encouraging me and giving me support when I need it has always been so wonderful to have. Also, I am really lucky that my friends are incredibly supportive and one of my closest friends has a daughter with CF, so it’s good to have a friend (like all my other friends) who understands what having the illness is like, having to watch her daughter go through it. 

Speaking to other people with CF on social media has also been a massive help since social media became a huge part of our lives. I have made a lot of wonderful friends online who have CF, as we all help each other, offer advice to each other and have witty banter.

My health team are an amazing support to me too, they are always at the end of the phone when I need them and they always listen to my concerns and meet my needs

Lucy is sitting on her bed, smiling at the camera. Around her, is all of the medications and devices she uses to help manage her conditions and symptoms.

Have I Changed As A Person?

I wouldn’t say I have changed as a person as I have not known any different. What you consider as your normal is my normal. When people ask me what it’s like to have CF, I answer them with “What’s it like to be healthy?”

One thing I will say is that I will not let my illness define me as a person. I want people to not refer to me as the girl who has CF or the one who always coughs! I want to be known as Lucy. Nothing else.

My Favourite Superhero or Villain

I’ve never really thought about having a favourite superhero… Maybe I would have to say Catwoman, purely because I’m a huge cat lover!

Thank you so much Lucy for raising awareness!

If you would like to stay up to date with Lucy, then you can find her on Instagram, Twitter, Facebook, Pinterest, and her blog, Lucy Mary.

7 thoughts on “The Reality of Cystic Fibrosis – Guest Post by Lucy

    1. Thank you again Lucy! It’s mad how quick it came around, only seemed like last week we were chatting, but its been a couple of months! Hope you’re doing OK 💚

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  1. Hi Lucy, thanks for raising awareness of CF. Two of my school friends have it so I know about it. But I wasn’t aware of diabetes related to it, thanks for sharing your experiences. I went to Uni in Wales for a year (Swansea) and studied Geography and Spanish there. I have Cerebral Palsy Hydrocephalus and 4 visual impairments. I did a The Reality Of…post too.

    Liked by 1 person

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