After bronchiectasis, I was depressed - then I found Breathe Easy

Glenys went into a depression after developing bronchiectasis. But after discovering her local Breathe Easy group, she's building a new life in the slow lane. 

Glenys on her allotment.

I was leading an active, healthy life, spending hours tending to my allotment, hiking mountains, exploring castles and visiting my daughter in Wales.

I'd also finally found a job I really liked - and was good at! - working as a learning support assistant looking after special needs children. I loved it. 

Then one day, I started to get terrible pains in my joints. I went to my doctor, who gave me steroids. Almost straight away, I got a terrible chest infection. It got so bad that I collapsed while having lunch. 

I went on antibiotics, but didn't improve. The doctors told me there was nothing else they could do. They were so abrupt.

I was getting so fed up. 

Finally, I found a different doctor, and after some x-rays and CT scans, I was diagnosed with bronchiectasis, and later on bronchiolitis obliterans. My chest hurt so much, but that was only the physical part of it.

Mentally, I suffered far more. 

Normal life went on hold

I became too ill to do my job. There was a lot of running in the playground that I just couldn’t keep up with. I realised that if there was an emergency, I’d have found it hard enough to look after myself, let alone the children.

My job had gone. My life was on hold. The things I liked doing were over.

Suddenly I found myself feeling jealous of other people going on walks, or heading to work. I would think: that’s not fair! I never smoked, I ate well and had walked absolutely everywhere. After all, I had two legs, didn’t I? Well, I still had two legs, but I didn't feel like I had two lungs anymore. 

I couldn't walk from kitchen to living room to make a cup of tea without getting out of breath. Exploring castle battlements became a  memory. 

I got depressed. My job had gone. My life was on hold. The things I liked doing were over. I was in a terrible state.

A chance encounter

Then, one day, I was at the hospital for some tests. I got out of breath while walking, so I stopped at a little information area on the way.

Someone else sitting there could tell that I was breathless, so they handed me a leaflet, which was tucked away under other brochures.

That was when I first found out about Breathe Easy. I joined straight away.

My first Breathe Easy meeting 

From my first Breathe Easy meeting, I could tell how supportive and understanding a place it was. Normally if you walk into a place out of breath, people make such a fuss - or try to call you an ambulance! Not here. Instead, they just pulled me up a chair.

I was made to feel so welcome. Everyone was so helpful.

At Breathe Easy, I realised I was among friends.

At my second meeting, I was sitting in the back coughing. The man next to me left to get a glass of water. Then I realised he'd fetched it for me! I realised I was among friends. It was lovely. 

We have some amazing speakers, which our wonderful chair Margaret organises. We all swap advice about which doctor to see, or share tips, like drinking diluted pineapple juice for a dry mouth.

And it’s not just talking about health either - sometimes we have other guests, like a duo who perform poetry and play the guitar. 

It’s such a supportive place, and it’s helped me so much.

A new way to live

Gradually, I’ve found new ways to live. It can take a long time, but you get over it.

Gradually, I’ve found new ways to live. It can take a long time, but you get over it. You just say to yourself, “Okay, I’m not that person anymore. But this is my new pace, and this is what I can do.”

Now, instead of spending hours digging pits to plant my courgettes, I take my time, plan ahead and get help lifting the compost bins. I remember to book travel assistance at train stations when heading to Wales, and do most of my shopping online. 

I’ve had to draw a line on some things, and accept that they’re gone. Doing that has helped me build my new life. Now I’m getting used to living in the slow lane and pacing myself, instead of dashing about.

Breathe Easy helps me feel like I have a life again 

Glenys

If someone's not been through it, then it’s very hard to explain the sudden devastation when you discover that life as you know it has gone. I felt like I was in mourning, a bit like as if I had died. 

I’m so glad I found Breathe Easy. It helps me feel I have a life again, especially when I’m stuck indoors so often. It was just pure chance that I stopped at that information point in the hospital. 

More people should be told about Breathe Easy. It’s where I learned I wasn’t alone - that other people understand what I’m going through too. We need to get the word out there. 

Find your nearest Breathe Easy group


Comments

I was very interested in reading you story Glenys because it is very similar to that of my own. I too have bronchiectasis but I also have emphysema, amongst other non related problems. Being forced into early retirement at the age of 60 after fighting of the progression of Charcot Mare Tooth Disease I was left at a very low point in my life. After spending the next 2 years in and out of Papworth I was discharged with these words ringing in my ears, "you may as well go home Mr. Hume as you are not responding to the treatment and we have nothing else w can give you", so my wife too me home...... About 5 years ago a Breathe Easy group was about to start in Great Cornard, Sudbury so I went along with my wife and I joined there & then. After about a year the treasurer was taken ill and I volunteered and become treasure and still am. We have also started a small exercise group which meets twice a week and is very successful, although we are always looking for moor members. Depression, I have suffered for several years and just when I think I can manage without the tablet I take on a daily basis, BANG, something else happens, and so it goes on. I have to say though Breathe Easy and our exercise group not only helps me but all of the other members as well.........
I empathise with Glenys. My story is very similar but as well as Bronchiectasis I also have severe emphysema.  I have heard of Breathe Easy Groups but never had the courage to find one but I certainly will now.  Thank you Glenys for sharing your story. 
Have any of the support group considered Saltcave therapy? There is one in Edinburgh and a family member had now had 9 sessions and found great improvement with his sinuses also. Unfortunately it is private and unlike some NHS boards in England who help finance complimentary treatments Wales and Scotland do not.
Very true I also am in the breathe easy committee 
Thanks for sharing your story with us Glenys. I had suffered for years with shortness of breath and misdiagnosis time and time again by GPS. Then after a few days of coughing and chest pain i went to A+E . I was admitted to a cardiac ward and spent 10x days being tested, questioned and monitored. At the age of 39xyrs I then was diagnosed with pulmonary arterial hypertension caused by an undiagnosed hole in my heart that I was born with!! My pah is severe, I also have right sided heart failure. Im now under one of the few p.h. specialist centres. My life now is a constant exhausting struggle, along with hospital appointments and medications that have unbearable side effects. I am grateful to have been diagnosed but often question 'why me?' I suffer anxiety and low moods almost daily now and felt so alone mentally. I cannot physically keep up with my daily needs and spend most days indoors. I have never met someone yet whom has pah and so cannot talk about my struggles with anyone who understands the disease. After reading your story, I will contact my local breathe easy group and hopefully like you, find comfort and friendship with people who have similar conditions. Many thanks.
I HAVE bronchiectasis, and severe COPD part of that is emphysema , my experience is very different to the other people who have commented. In Knowsley where I live we have COPD nurses and consultants, the service is execellent. I am sorry other people have had their experiences, but I am a jar half full person, I never feel sorry for myself. I get anxious and frightened as I did the early hours this morning as I have another flare up. I wish you all had what we have in Merseyside, we are so well taken care of. hope things improve for you all.
Thanks Glenys what an uplifting story so inspirational. I am newly diagnosed with Bronchiectasis not pleased with my Consultant who tells me nothing but I found my nearest Breathe Easy Group. The members are so welcoming and have lots of useful tips for me. I wish you well and thanks again
We used to have a group in Cosham , near Portsmouth where I travelled to from Fareham , this group has now closed so are there any in the Fareham area please ? I found it both helpful and friendly and know I will miss it .
I had a severe clinical depression which lasted for some years. Whilst I am much better, I am on medication and likely to remain so for the rest of my life. I was diagnosed with a hiatus hernia around 15 years ago, for which I am on medication. More recently I was diagnosed with type 2 diabetes and am on medication for that. Then I started having chest trouble - infections on and off through the Winter months up to April, so I was often on anti-biotics too. Eventually I was told I had bronchiectasis, but was not offered any treatment or advice other than to keep anti-biotics and sputum pots at the ready. The acid reflux was so bad that at times I could sit on the bathroom floor for ages coughing and retching, always at night, with my throat burning with the acrid acid. Eventually I was referred to a consultant who told me that part of my stomach had migrated up into my chest cavity. I went for corrective surgery after which I was told that around 90% of my stomach was up in my chest and was compromising my lungs and possibly my heart. I was so much better for a year, with no chest infections that Winter, walking at my normal pace, no wheezing, and able to sing. Sadly this has recurred. The consultant confirmed that part of my stomach is back in my chest although there is infrequent acid reflux, but all the other symptoms are back, preventing me from proper walking, singing or dancing. So I've struggled with the pall of depression and anxiety hanging over me. The bronchiectasis is a constant problem for my lungs, but whatever its impact is, it is being exacerbated by the "upwardly mobile" stomach. I feel unfit physically, frequently low-spirited, lethargic and easily stressed. My breathing is nowhere near as bad as I know it is for many bronchiectasis and other lung condition sufferers, but taken as part of all these other things, it makes me feel that I can never feel any better, nor any more physically active. I also note that there are no support services in my area (Middlesbrough/Stockton). I am feeling depressed, pessimistic and everything seems like too much effort. I still go to various classes and try to keep in touch with friends, but I'd much prefer to just pull up the drawbridge and hide. Any ideas?
We have one in Norwich, too, and it is without doubt of immense benefit to anyone with a debilitating lung condition.

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23 March 2018