Managing fatigue with a lung condition
Last month, we asked you how your lung condition makes you feel. We had lots of different responses, but the most common answer was tiredness or exhaustion. One person who responded was Tina, a retired NHS worker, from the West Midlands. While working on the front line during the pandemic, Tina developed bronchiectasis and interstitial lung disease (ILD). Tina struggles with feeling tired on a daily basis, but has come up with some excellent ways to help her cope and stay positive. In this blog, she shares her story and her advice for anyone else struggling with feelings of exhaustion.
I was working on the ward as a Therapy Assistant for the NHS when I got COVID in January 2021. I never properly recovered from the COVID infection and kept getting repeated chest infections. The doctor would give me antibiotics, but then a couple of weeks later I’d have another infection. I returned to work in March of 2021, but I only lasted two days before ending up in A&E struggling to breathe. This went on and on until I finally received my diagnosis of bronchiectasis and ILD in June. I was forced to retire early from work this October, after 38 years with the NHS.
Making positive changes
Having a lung condition can really slow you down. I have to think more about every action I take. When I was first diagnosed, I’d just want to lie on the sofa because I felt so worn out. My husband and I decided something had to change, so we got a Border Collie puppy and it’s the best decision we ever made. I didn’t realise how low I had been feeling until we got Maeve. She got me off the sofa and going on walks. The dog needs a routine, which is really good for me too. I try to look for something positive in every day and most days it’s Maeve jumping up at me and wagging her tail.
I try to ration my energy throughout the day, as I know I have a limited amount. I use the ‘Spoons’ metaphor to help me understand how much energy I have to spare. This is where you imagine you have ten spoons and each activity you do uses one of those spoons. For instance, getting up and dressed in the morning might use one spoon, and walking the dog will use another. If I run out of spoons, I know I need to rest.
Finding what works for you
Some days I feel like I can do a lot and other days I struggle to get out and about. It can be really frustrating, but my family and friends are very supportive and understanding if I need to cancel plans. My advice to anyone else struggling with tiredness and fatigue is to make sure you take advantage of your ‘good days’ but don’t go mad, as you might find you struggle the next day. Now I have an occupational therapist and I have just started a course of pulmonary rehab, which is helping me stay active in a way that is right for me. I am much happier and feel like I have much more energy now because I understand my body better.
If you need any support or advice on your lung condition, visit our website for expert health advice. We have advice on breathlessness as well as advice for looking after your mental health. Or contact our friendly Helpline team on 0300 222 5800 or email helpline@asthmaandlung.org.uk. Lines open 9am-5pm, Monday to Friday. If you have asthma, you can also contact the Helpline on WhatsApp on 07378 606 728.
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Our amazing supporter, Gerard, sadly lost his wife Margaret to bronchiectasis in October 2023. This year he took on a special challenge to remember her and raise awareness of this condition. Here he tells us all about the challenge and what it meant to him.