Tuesday, 7 May 2019

GUEST POST by Lyssa for Asthma Awareness Day 2019

a young girl with blond hair and sparkly headband wearing a nasal oxygen cannula
Many people are scared of drowning, scared of the thought of gasping for air, of feeling your lungs burning and your head feeling like it is going to explode - I'm not. They say that this condition is like drowning from the inside. My story started with brittle asthma, and as a result of that I now have a life-limiting lung disease.
Brittle or Severe Asthma affects 1 in 20 asthma sufferers (Asthma UK) it is divided into 2 types, type 1 and type 2, it is categorised by variations in lung function and the frequency of attacks despite being on high amounts of medication. Many people see asthma as a puff on a blue inhaler by the geek on the TV shows, it can't be that bad can it? In the UK alone 3 people a week die from asthma (Asthma UK). I think that the representation of asthma in the media is partly to blame for some of the shame that I felt as a child, I would not use my inhaler in public which contributed to many hospital stays. My journey with asthma started when I was a baby, and has continued all my life, I have been in intensive care 103 times, ventilated 67 times, had over 300 chest x-rays, and have spent many days/months in hospital. Asthma has stolen huge chunks of my childhood and young adulthood and I'm only 26. But it has also made me the person that I am today, so as hard as it has been to grow up with this condition I wouldn't change anything, because I am stronger and more compassionate than I ever would have been without it.
A young girl with her hair in a braid with a nasal oxygen cannula
My days revolve around treatments and physio. 
I am attached to oxygen 24/7 which at times feels less like a breathe of fresh air and other times more like heavy shackles tying me into a life I no longer recognise. 

In the morning I begin with 3 nebulisers, whilst wearing my vest which shakes and vibrates to try to clear mucus, this takes about 30 minutes and then it is on to the cough assist machine that forces air in so that it can then help me to cough. Then my medication of which I'm on quite a lot. Then the day can begin.
This routine is done 3 times a day on my good days and on my bad days I have to up it to 6 times a day. So all-in-all a minimum of 3 hours a day of treatments for my asthma and lung condition. 
Sometimes my treatments tire me out so much I end up needing to rest after. Being attached to oxygen 24/7 does mean that everything that you do has to be carefully planned. I have to make sure that I am going to have enough oxygen left in the tank to do what I want to and then get home. Then there are the stares and the pitying looks from the people that think you are likely to drop down dead in front of their eyes, or the people who seem to think that you are an inspiration simply because you have made it to the milk aisle of the supermarket. 
Being on oxygen makes my invisible illness more visible and I hate it. I wish that no one had to know that I have an illness, so that I could just be treated just like everyone else and not treated as though I am a china doll. Because so little is known about brittle/severe asthma there are not many treatments available, and the treatments that are available can have catastrophic consequences. The steroids that I have been on my whole life have caused me to develop osteoporosis, as well as muscular atrophy, Addison's disease and Cushing's Disease, as well as making me infertile and to have paper thin skin, which rips at the slightest touch. Steroids are the drugs we love to hate as they say, and I agree, I love that they keep me alive but hate the effects from them.
A young girl with blood hair with a central line and a nasal CPAP
Asthma affects so much more than just my breathing, it affects how much I can do because of tiredness, it affects the people I care about who have a constant fear that I am going to die, and it affects my self-esteem. To have to fight to breathe everyday is exhausting and can easily drag your mood down, for me I have suffered with my mental health as a direct result of asthma. I have Complex PTSD with many of my flashbacks being from times that I have been in intensive care. I also struggle with anxiety because some times I am so scared of dying and other days I think anything would be better than the constant pain, the heaving of my chest, the burning, the lack of sleep and the endless days.

But please never think that there are no good things to having brittle/severe asthma because there is. I have learnt to love the smell of fresh cut grass from the hospital bed, I drink in the beauty of the setting sun. I enjoy so much more the sound of the sea as the waves crashing, and cascading water falls. I bask in the glory of the sun beating down and I love that little bit harder because I know that my time here is limited, so I think I see life that bit brighter. I may have asthma but more than anything it has taught me to treasure every second of my life, for God's blessings are endless even in my suffering.


rainbow background with a quote reading: sometimes the strength within you is not a big fiery flame for all to see, it is just a tiny spark that whispers ever so softy, "you got this; keep going"