Asthma? Just take your blue inhaler!
It hasn’t been very easy to cope with this change to my asthma. The uncontrolled Severe Asthma has impacted my career, social life, mobility and relations. I became depressed, isolated and full of fear. Not being able to breath easily is something most people take for granted, yet one in four people in the UK have a lung condition. In the UK, 5.4 million people have asthma. That’s one in every 12 adults and one in every 11 children. (Asthma & Lung UK). Around 4% of those people have what’s known as severe asthma.
https://www.asthmaandlung.org.uk/conditions/severe-asthma
Many people with this severe form live in constant fear of their next asthma attack. They can become caught in a vicious cycle of emergency trips to hospital, intensive care, and regular doses of strong oral corticosteroid (OCS) tablets or injections. These tablets can relieve the symptoms, but they have devastating side effects on physical and mental health, from kidney and bone damage to insomnia and suicidal thoughts.
In my case, my lung function and capacity is now a sixth of what it should be. I have a breathing pattern disorder and a larynx disfunction, both commonly seen in severe asthma sufferers. This exacerbates my breathlessness. It’s like having an elephant sitting on my chest twenty-four seven. It’s exhausting, with constant coughing and trying to suck in air that feels at best, heavy and thick like treacle. At worst, there is none.
Biological treatments for severe asthma are only being prescribed to one in four people, which leaves the majority of sufferers missing out and risking high levels of serious side effects from a reliance on OCS medication. These biological treatments are also known as monoclonal antibodies or mAbs for short. Specialist treatments using antibodies produced in a laboratory which can target specific cells in the body. They can treat some types of severe asthma by helping to stop body processes that cause the lungs to inflame.
This inflammation can be caused by either allergies or high levels of a cell in the body called an eosinophil. In my case it’s both.
However, I am one of the lucky few out of an estimated 14,000 patients a year, obtaining biological therapies to manage their severe Asthma. I still take a low maintenance dose of OCS, and other inhaled medications. The positive impact of receiving the biological treatment means that I take much less frequent trips to A&E. My asthma is managed better, with my specialist team supporting me with respiratory physiotherapy, speech therapy, monitoring, and testing. My team have been fully supportive and have given me the most wonderful care.
However, the impact of the last three years isn’t just physical. I also suffer from anxiety and depression, which is understandable when you are feeling like you are taking your last breath every moment. A simple task such as dressing or doing the washing up leaves you gasping for air, exhausted and needing to rest. You might as well be facing Everest when viewing a flight of stairs. Trying to explain to people that it’s not as simple as sucking on a blue inhaler leaves you misunderstood, marginalised, and isolated. This now means I am also under the care of a mental health team, on medication and receiving therapy. I have often wanted to give up. The constant fight to breath and living with depression all feeling rather pointless. The mental health problems have a knock-on effect with my Asthma, feeling like one feeds off of the other.
Is all hope lost? Funnily enough no. I have taken steps to get back to my old me, the person I thought I had lost, who had been consumed by my disabilities. I’m not sure it was anger, frustration or bloody mindedness that has seen me continuing. However, one thing is for sure, It isn’t me facing this all on my own. I have the support of my partner, family, friends and also my communities, of which I am indebted to and truly grateful. They have shown patience, understanding, tolerance and immense kindness in coping and caring for me. I am not alone in this.
So I have chosen to undertake a different journey, one that excites me at the same time scares the shit out of me. It had to be big, go large or go home as some may say. It had to push my fear, challenge me physically and mentally. I started to brainstorm, at first the ideas were enormous, audacious, and extreme. I didn’t want to face practicalities or address my families concerns. I am known for choosing the bold ideas, and nearly breaking myself in the process. So a new strange concept of compromise, of accepting my vulnerabilities and health issues, were ultimately taken into account and choices adapted. Just because I wasn’t the person I was before didn’t mean I couldn’t find a way to challenge myself, albeit in a different form.
There is always a solution, you might just have to look differently at the problem and look for the light. If in doubt check the sanity of your creations with close ones and trusted peers. There will be nah sayers, doubt mongers’ and disbelievers, those take note of kindly and then rationalise, its often their own fears and misconceptions that harbour their negativity. It made me more determined to pull this idea off. I didn’t know where to start or even if I could get it halfway off the ground. However, I found hope, a dream, a hook of positivity to hang from and hold tight.