Living with breathlessness

[SayMumOneMoreTime]

Not an aibu, posting for traffic. If you live with breathlessness I need your help!

I am setting up a group to support people with chronic lung conditions. An important part of the support is to encourage people to leave their home where they feel safe, and come to the group to participate in activities. Everything is designed to be suitable for the participants and their abilities, with clinical input. The idea is that by attending and participating people will improve their quality of life and their experience of breathlessness.

Please can you let me know anything you think is important for me to consider in preparation?

What worries would you have?
What would help ease your worries and encourage you to attend?

I want to be able to anticipate any concerns, so the participants feel safe and trust we have their best interests at heart.

Thanks in advance!

Good for you OP what a lovely thing to do.

I am 34 and got diagnosed with idopathic pulmonary hypertension when I was 18. My illness and breathlessness came out of nowhere!!

In the early days I was extremely unwell and very isolated. Being so young I had no one that understood my diagnosis or prognosis and it was the loneliest time of my life!!

I'd of loved to of had somewhere to attend and to be around people who understood. Due to my prognosis (I was given 18 months) I developed quite bad anxiety which was more deliberating than my PH. I think it would be good to have someone on hand who is first aid trained and someone who is able to support people who've developed anxiety. Also plenty of seating will be needed.

Good luck OP ❤

Should of said it would have been my anxiety that stopped me. Advertising it as a safe space with a first aider would have helped me attend.

Thanks, that's a brilliant idea! We'll have a nurse there for the first few sessions, but we can train the deliverers in first aid so there is always someone with the skills present.

What an awful experience you have had when so young. How are you doing these days?

This isn’t a great idea. If one person attends with covid you’re possibly going to wipe out an entire room of vulnerable people. If you’re going to proceed you need to plan to mitigate that risk

@Ember90 are you saying that people with chronic illness are not allowed to go anywhere, ever now? I think people can make their own risk assessments.

@SayMumOneMoreTime what a great idea. I come into contact with people with lots of different acute and chronic illness and a common theme is that they would like to be able to speak with others with the same struggles. I've been told that although they appreciate the medical professional support, it's not the same as someone who has been there.

Absolutely not what I said. Please re read. What I said is there is still significant risk associated with a collective of (very) vulnerable people and that you need to consider how you’re going to manage this.

@Ember90 believe me the loneliness and isolation can be much more dangerous than covid. You should obviously take precautions keep the room ventilated, ask people to test (we are still entitled to tests) have hand sanitiser. People will do what they feel comfortable with.

@SayMumOneMoreTime I am doing good thank you. I'm extremely lucky, medication eventually started working for me and I'm now classes as a responder.
My mental health was in tatters in my early 20's due to my diagnosis so after working through things in my later 20's I decided to do my degree and became a mental health social worker (which is what I was studying before my diagnosis) which is what I've been doing for the last 7 years and I'm down to yearly appointments now with my specialist and live a relatively normal life.

Had I of had the opportunity to join a group though like you are planning in my younger years it would have benefitted me so much. Just to have other people who understood, it would have been life changing.

What you are doing is a great thing that could seriously benefit and change people's lives.

@Ember90 lots of risk assessments have been done, visors and masks available to all, ventilation a priority. Worry not, safety is the starting point!

@Elmo230885 yes it's the support of others in the same boat that helps so much. That's a huge part of the idea for us.

@Christmasevesofa i'm so glad you have better health these days, and use your experience to help others ❤️

My father in law has lung issues and I think that making sure the venue is accessible would be important to him. He wouldn't be able to walk far and certainly not up stairs

My mum recently died from COPD and the isolation from being CEV definitely contributed to her condition worsening as she no longer did trips out and became more breathless in the long run due to inactivity.

She got a lot out of the social aspects of her exercise groups with others with COPD and other lung problems so this group sounds great.

Transport might be an issue for some people. Would you provide transport for those who are unable to get a bus?

Wish this was happening near me.

A huge thing round here would be parking. Well advertised parking, especially for those still apply Ming for blue badges or who don’t have one. Lots of permits ready if needed. Sounds silly, but it’s a big constant worry in some areas and a mindset to break through with very clear answers.

When you set up a group. Post in in General Health or it will disappear under the avalanche that is AIBU.