30 July 2020
I don’t go near anyone, so it’s almost like staying at home
Kimberlee, 64, has bronchiectasis and has told us about how the pandemic has impacted on her mental health.
I am now feeling quite depressed – it’s crept up on me
When you are living with a lung disease, your symptoms can be life-altering so it’s important to do everything you can to maintain a normal routine. I am used to seeing my family and friends, carrying out work to support other people like me living with lung disease and trundling around the local charity shops.
Lockdown has been quite difficult. I actually didn’t think that it would affect my mood that much, but I am now feeling quite depressed – it’s crept up on me. Recently, I started to get a bit teary. I’m a ‘doer’ and like keeping my mind busy.
Although I’m not really a people person, I like to keep my mind on the go. I like to have a reason to get up in the morning and fit lots of things into my day. That might be trying to do a bit of housework, or volunteering. That’s how I like my days to be. Not getting up at nine o’clock and thinking, ‘Okay, so what now?’ Go and stand in a queue for a supermarket?!’. Whoop-dee-do. It’s not enough for me.
I’m usually a very busy person. I normally spend a lot of time with the Eastbourne Breathe Easy group. I am also a patient representative on the Eastbourne, Hailsham, and Seaford, Clinical Commissioning Group, as well as the Taskforce for Lung Health, and I sit on a similar group at the local university, and volunteer on the pulmonary rehabilitation course at Brighton University. I’m not doing any of those things now, so it’s quite hard for me.
Lots of things are depressing about this situation. I love my partner but spending every single moment with your partner 24/7 and being stuck indoors can take its toll. You lose a bit of motivation. For instance, I used to exercise a lot, but recently, I have not felt the drive to do the exercises I used to.
Despite being told to shield, I had no choice but to go out to get our shopping
When the pandemic started, I had been out shopping on a regular basis, up until, all of a sudden, I received two shielding letters, one from the hospital and one from the doctor, asking me to stay inside for six weeks.
To be honest, I did go out, but I didn’t go near anyone. Basically, it’s almost like staying at home. I didn’t go out for pleasure or anything like that. I just went out with my husband (who is also my carer), to get the shopping and we stayed away from everybody. Nobody came near us – it’s not like we were sitting in the park or taking a walk along the seafront or things like that.
When I did go to my local supermarket, they were very strict. I hated it. I absolutely hated it. Especially having to wait an hour or more just to get the shopping. We had nobody to get the shopping for us and because we didn’t have the shielding letter at first so we couldn’t get priority shopping for food deliveries. Steve, my husband, has asthma and he didn’t get his letter until quite late. We had no choice but to get our own shopping.
But we did find that people are more friendly than they used to be. It’s a far better society. I wish society could stay like this forever, because people are more friendly, people are more laid-back and polite. People smile, give way to each other, keep away from one another and stay in their place in a queue. It’s quite funny though, when you go into a supermarket and you are told by staff to, “Put your basket there and step back behind the line.” It’s almost apocalyptic.
Sharing how we feel with one another has been helpful
I am trying to keep my mind as busy as much as I can. The Breathe Easy Group I set up and run now meets virtually, once a month. I am writing a lot of funding bids and the group’s newsletter. I have set up a list of vulnerable people in our area and one of my volunteers phones them to check up on them, which is good. I also received funding from Tesco to provide PPE to our members.
Recently, I helped set up a project called PhotoVoice where six members of our group (people that suffer with breathlessness and lung disease), virtually meet once a fortnight and are given a subject such as isolation, resilience, breathlessness etc. They are asked to write and take a photograph about how it makes them feel or affects them. The pictures and pieces of writing will go into exhibitions. I organised for signposting to Health in Mind, the NHS mental health service in East Sussex, for the people taking part, so they could talk to someone about their feelings or anything that the project brought up that might be bothering them.
It struck me that we live in a strange time when one of the ladies was asked about isolation and she took a photo of her Netflix screen, because she is very ill and spends most of her time watching Netflix. I hope being connected with our group has helped her feel less alone.
Being part of the Breathe Easy Group and sharing how we feel with another has been helpful in lockdown. We are going to having game afternoons on Zoom soon, which will be fun. The Group are hoping to be able to meet in person again in December or the new year, but in the meantime, we might be planning a socially distanced meet up in a park now that the shielding advice is eased. I am looking forward to seeing everyone again, not just on Zoom, and having a good old catch up.
The Taskforce for Lung Health recommends that respiratory guidelines involve positive interventions for people with mental health problems. We also recommend that support groups which are run in joint leadership between people affected by lung disease and health care professionals are promoted and signposted to people living with lung disease, and their families and carers.