Julie’s story

Julie is 63 and lives in Derbyshire. In April 2020 she was diagnosed with pulmonary hypertension as a result of sarcoidosis in her lungs.

“I was diagnosed at the beginning of the first lockdown, and I was very low with it, very depressed. I barely left the house for that first year.

Then I had a lovely conversation with Carol. I was in a limbo where I didn’t know what exercises I could do and that was the frightening thing. I wasn’t sure how far I should push myself.

When I spoke to Carol, I told her about a flat 1km walk I had found around my home, and she recommended I keep doing that. She also found me some exercises I could do at home and I started to follow those.

My spirits lifted. I always used to love going for a walk before I got ill, and it was Carol who gave me the green light to do it again.

The support has been key in lifting my spirits, getting me moving, and helping me to have a better outlook on life. As much as my husband encouraged me, I didn’t have the confidence. It was Carol [as an expert] that gave me the confidence to do it. She helped me understand that breathlessness is fine, but pain isn’t.

Last year, when I didn’t know what to do [in terms of physical activity], I felt quite cut off. I didn’t really feel like I was involved in society. I felt insular. But I feel the exercise has helped me come out of myself more, and when we chat to people on walks, I feel a lot more confident with it.

My husband has noticed a difference in me. He said I seem to approach things differently now. Last year I felt so low because I didn’t know what I could do, but this year I feel like I’ve been guided, and received the expert advice, and I now feel so much more upbeat. I’m looking forwards, not backwards.

I feel I have more energy and mojo to do things, whereas before I was very lethargic. It’s given me my mojo back.

Plus, I can walk up the stairs now without feeling totally breathless, which is amazing. At one time, I was having to stop twice each time.

Carol’s help has also given me the confidence to take part in online exercise sessions once a week, consisting of 45 minutes of armchair aerobics with a bit of yoga. She reassured me it would be ok and from a mental health point of view, being able to join in with others in a class has picked me up no end.

Additionally, when I told Carol I wanted to lose weight, she sent me some nutritional information and I’ve been incorporating some of that advice and tips in the planning of my diet and food shopping. It gives me something to focus on.

If it hadn’t been for Carol, I’d still be wallowing, wondering what I could do. It was Carol that said ‘yes, get out for a walk, breathe the fresh air’. To listen to the birds, and feel part of the community, is amazing. Its’ so important when you’re newly diagnosed [with PH] to have that specialist support and advice.”