“I have always had asthma from a young age, with many colds and chest infections and lots of flares ups. I missed school and was not being able to exercise as well as others, but tried to get on the best I could.
My baby asthma progressed to medium/persistent asthma, and then on to severe asthma.
This is my journey and how I became an asthma warrior.
I studied Fashion Design at University West Of England in 2017. In my last year, I started to become really tired towards the end of my final semester, and was starting to struggle with my work load and university deadlines along with the stress from hand ins.
I was always active and in great shape, doing well with my fitness. I was doing yoga and Pilates while there.
I then moved back home after university and got a part-time fashion job and continued with my start up fashion label, as this was my dream and I had taken time off from it while studying.
I was feeling more tired and starting to see the doctors more and more – sometimes three times a week – and seeing my asthma nurse more often; it was starting to feel like my second home.
I was then referred to an allergy specialist and lung consultant team.
Quite a few months passed before I could go to my hospital appointment. I was getting more frustrated and finding it harder to walk longer distances. I needed answers, and I waited just over eight months.
When I saw my team, I had to do a lot of lung tests and an allergy test. I found out I am severely allergic to dust.
My medication was changed, and I was told to wait another six months. Little did I know this was the start of changing my medication many times, with only some relief or, none at all.
Each time was like a trial, and my asthma did not really improve.
This went on for around a year and half. I was told that they could fix my lungs and get me back to my original fitness level, but this was not going to be the case.
I then started to have many A and E hospital visits more frequently, and emergency care needed. Asthma attacks are so scary and freighting, just trying to gasp for air and being unable to talk is horrendous.
I worry about being on my own, how I will call for an ambulance if I need one?
My asthma exacerbations were becoming so frequent, and steroids are used to open up the lungs and reduce inflammation. I was on steroids a few times a year, then that turned into every day.
Steroids really help, but not without serious side effects. You’re hungry all the time, not tired, have mood swings, ect.
Over time you even get a ‘moon face’ where your face swells up from water retention and you store fat in your abdomen area. Also the comedown after taking them for longer bursts is terrible – sweating, shakes, dizzy, the list is endless.
My life was revolving around hospital care, appointments, and medication charts so I take my meds on time. Weeks turn into months in a haze. While this was all happening, I still did my fashion in-between and was determined to make it. In hindsight, I should have rested up after being in hospital. It was stupid of me, and I should have taken plenty of time to rest and recuperate. It kept me focused and I had something to work towards.
In the last two years, my life has been a whirlwind of medication, hospital, and recovery time.
At the end of 2019, I started using a wheelchair on and off. I struggle with walking longer distances, and now I have a disabled badge, which helps so much and gives me more independence that I feel was taken away.
One time I had several asthma attacks when I was just out of the hospital. I had to collect my meds and did not want to ask for help so I went and parked my car a street away and walked up.
I was so exhausted I could not get back to my car, and had to ring a taxi and rest at the pharmacy.
The taxi man could not understand why I needed it for such a short journey as I looked well with makeup on. I knew then that I needed a blue badge.
I do start to feel really good and nearly forget about my asthma, my energy levels go up a bit, and I see friends and get out more, then the circle starts again and I have a serious flare up. Severe asthma can be life threatening every time, and can scar the lungs. It takes me around three weeks to fully recover each time, and I have several big flare ups a year that require me to go to the hospital. I have no energy, and feel like I have been hit by a car straight after. All my ribs ache and stairs are just too much for me.
I can only stand for small amounts of time, so I have to cook anything easy and fast, and I sit down on a stool.
Being asthmatic I get giant panda eyes, and I get tired from talking and even standing up for long periods of time.
If I wear make up, people comment and say ‘you can’t be ill.’ My makeup is shield and makes me feel and look better. I have a chronic cough and get out of breathe nearly straight away sometimes.
My parents have always been supportive. They do so much for me, they have seen me really struggle over the years.
The last year has been the hardest due to the pandemic. I have lost many friends due to this, as many people do not have time for a sick friend.
Severe asthma is unpredictable, so every day is different. I have to cancel meet-ups and sometimes I am using all my energy to just breathe.
I only have energy now for people who really care and reach out to me in a genuine way and don’t want anything in return.
Covid stress has really added to my anxiety as I have been shielding for so long, and now I only feel comfortable doing outdoor activates.
I was making free masks last year for the NHS and used up all my spare energy helping others, and in the process I made two new fantastic friends online.
Sarah has had many strokes and heart attacks and is a survivor. She has been my rock and really spreads kindness and has a great sense of humor.
The other friend is Lisa. We met online on a Facebook health community group. We both have severe asthma, I have A-Topic allergic asthma and she has Eosinophilic asthma.
We understand each other’s journeys and have the same health team. We support each other on low days, we make each other laugh, and we have become firm friends. This is a massive high in my asthma journey.
My lungs only work 60%, so everything takes so much energy and people do not realize that. I use my wheelchair if we go out so I can do a few more things, My fiancé Stuart tries to make it fun; he jazzed up my wheelchair with tinsel and alpaca lights, so this gets some attention while I’m out. LOL.
I have had very low periods with my asthma, but my fashion keeps me going. I have a home sewing studio, and work it around my health and rest in-between. I also enjoy crime podcasts when I am stuck in bed, and am a massive Harry Potter fan, I love to escape reality.
The start of this year I had a nebulizer trial and qualified, I am classed as stage four severe asthma – the highest level – and have tried every drug available to me.
At times, I take over 14 pills a day and use numerous inhalers and my nebuliser four times a day.
If the nebulizer fails, I will be on steroid pills for life. This is ok short term, but long time I would have worse problems, so they do not want me on them forever.
I want others to know you are not alone in this journey and to speak up. Reach out to other people in a similar situation, so we can support each other.
I have tried everything over the years to try fixing my lungs myself – I felt pretty desperate at times.
With a healthy lifestyle, I try and do some yoga and meditation if I am up for it. This helps improve my lung function. Trying everything from juices and turmeric contraptions to CBD. CBD has some fantastic natural healing properties, and really helped me immensely over the years. It keeps me calm, as my anxiety can flare my lungs up and it helps with coming off all the steroid drugs.
I was feeling very lonely and isolated two years ago as I was at home so much and in bed all the time, so I got a rescue cat. I named her Una. She is my best friend and has really cheered me up. I am not allergic to Una, but my lungs are very inflamed still and smoke, pollution, and fumes set them off.
A year before the pandemic hit I wore a face mask, and now I actually fit in with society. I will always wear a mask now while traveling or at big gatherings. I have to plan my journeys as I get tired easily and I have a rescue pack of medication in case I cannot get to hospital. It really is very hard work.
From a severe asthmatic and asthma warrior, keep going. Look for small things in the day that make you happy, and make time for yourself. If your body needs to rest, make sure you do it. Reach out to others, you might even make a new friend like I did. Live your dreams and do not let asthma define you, you are so much more.”
This story was submitted to Love What Matters by Faye Holland-Hanbury from Birmingham UK. You can follow her journey on Instagram, her website, and her Etsy. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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