Tania’s Breathe & Connect Story
Tania shares her experience of the Breathe & Connect approach
What is Breathe & Connect?
Breathe & Connect is a programme using singing, breathing, relaxation and gentle movement. It is for people who have Long Covid and other long term breathing-related or health issues. darts developed the approach in 2022 during an intense three-month period funded through Doncaster Council and the Additional Restrictions Grant from South Yorkshire Mayoral Authority.
This period of development enabled darts artists and freelance artists to work collaboratively with each other, and with health professionals, to understand the health and social impacts of Long Covid. The artists worked together, and with groups of Doncaster adults, to test and refine their approach, using their experience of delivering years of singing and dance programmes but adapting the model to respond to the specific needs of Long Covid.
Tania’s story – the beginning
Tania (not her real name) is 58 and living with Addison’s Disease and Fibromyalgia. Addison’s Disease causes Tania to experience overwhelming exhaustion and lack of energy. She feels dizziness upon standing, muscle weakness, overwhelming lethargy, difficulty concentrating, mild clinical depression and headaches. In addition, the Fibromyalgia brings widespread pain: extreme sensitivity, stiffness, fatigue, poor sleep quality, cognitive problems (fibro-fog), slow/confused speech, unable to regulate body temperature and anxiety.
I struggle to wake up and get going in the mornings. I am constantly fatigued on some level or another, which makes it difficult to do much without taking frequent breaks. All basic activities can have an impact on my health, whether mental, energy-wise, or added pain, depending on how I am when I wake in the morning. I have less confidence, stamina and get-up-and-go. I suffer with low mood most of the day, which is added to when basic activities that give me joy (such as knitting, playing my flute/piano) cause added pain and fatigue if I do more than ten minutes.
Joining Breathe & Connect
Tania has attended darts’ Dance On sessions previously, when she was less affected by her current symptoms. She really enjoyed participating as she loves to dance. She was hoping to come back to the sessions and spoke to the dancers about her experience of having these conditions, so that they could find ways of adapting the movement so that Tania could join in. The Breathe & Connect sessions provided a new opportunity to engage in creative activity that was more aligned with her current health needs.
I found that initially, sitting and watching made me sad and frustrated that I couldn’t join in at all. However, since then, I have experimented with visualisation and seated, very low-level foot and upper body work, both of which work well for me. The meditative visualisation works well for my anxiety and helps me to be more aware of where I am holding tension, where my pain levels are on that day, which then informs me of how much I can manage. I feel frustrated that I cannot get up and join in to the extent that my heart and brain would like me to due to low energy levels, pain, the possible added exhaustion as a result of doing too much. All activities provided are possible to some extent or another, and by listening to my body each week, I can judge how much I can manage to do.
Helping artists to develop the approach
Tania has spent a long time working with our artists to find out the best way for her to take part and provided very useful suggestions during this period of development. She felt that we should start with the least impactful first, and then build up the options, rather than the big to the small. In this way people can feel that they are able to climb the ladder of success steps, rather than having to move down from the ‘desired’ level, to one that they can achieve. Tania felt that she would rather stay on the bottom rung with the knowledge that she could take a step up, than starting on the top rung, knowing that she would have to go down to reach her level.
During the development phase, Tania was able to learn more about her body and find improvements. She says:
I have noticed that my lower back and hips stiffen throughout the session – I began joining in the part of the session for gentle hip movement only initially, so that this would encourage my body to have less of a negative response to an enjoyable session. The following week I did a sitting version of the warm up, with gentle movements, and the week after the same with larger movements within my range. I am learning to acknowledge the fact that whatever energy level I feel I could achieve each session; I should go one level less. This should keep me in a safer place health wise following the session- rather than it impacting on my whole week, it may just have a small reaction for the afternoon. Just because I feel I could, doesn’t mean I should!
Tania also provided some really helpful thoughts for structuring our Dance On Breathe & Connect sessions. She suggested that we start each session with everyone doing a seated visualisation exercise and having some sort of chart or reference point like an initial short body scan meditation. This would allow group members to assess how they are feeling that day and therefore have a better ability to listen to their bodies to guide them to the level of each activity they may feel more able to engage in and how they may need to adapt it for their own needs. In this way, we can continue to give people the permission to understand and accept their level of participation for that moment, that day. They can also develop the understanding that other factors may affect their weekly progress, and that it is as likely to dip down as go up, and that this is totally ok.
Tania’s feedback has been essential in steering our learning about chronic illness and the challenges this condition presents. Her determination has been inspirational:
Being part of this [Breathe & Connect] programme has been a lifeline. Initially, it made me feel accountable – I had to go to not let anyone down. Even though it was uncomfortable emotionally, not being able to do and enjoy the class like the others. I was comparing myself with people who were a generation older than me that were able to engage fully. In fact, I walked out of the first class in tears after 15 minutes, ashamed, frustrated and angry with my body. But I kept going.
The importance of a creative approach
Tania was clear that the person-centred, creative approach made all the difference in her determination to keep attending and increase her engagement.
With wonderful and caring conversations with dance artists over the weeks, I began to discover what small steps I could do to feel that I was engaging to some extent and finding joy in what I was doing. Visualisation was my first game changer. When I joined in with my eyes closed, I could dance with full visual and emotional energy. The natural tiny movements that my body made did raise my heart beat and made me feel that warm tiredness in my muscles that you get from happy exercise. I could dance like nobody was watching! This gave me my first joyful experience however, because I visualised the entire class, I found that I had overdone things, and knew I needed to pull back from that the following week. I was really quite emotional after that session.
Having achieved these small successes, Tania was able to progress:
My next step was to do join in sitting down and by marking the steps with my feet, and doing very small movements with my upper body to imitate the arms. Having done several Feldenkrais sessions, I am aware that the smallest of movements can have a big positive impact on our bodies. This was lovely to experience, and I was surprised how tired my muscles felt afterwards. I did dip in and out of the exercises rather than doing them all, however much I wanted to – the music choices are wonderful and infectious!
Regular attendance at weekly sessions has made a profound difference to Tania and her ability to join in:
At the moment, after 8 weeks, I am now joining in fully with the warm up, seated and have got to a reasonable level of energy within my limits and range of arm movements. This is followed by my enjoying watching the rest of the class, getting further joy from feeling the music, and beginning to believe that, whilst I may not be able to now, I will be able to join in the class more fully as time goes on. I feel that I am not judged by others in the group. They celebrate my small wins with me and now that they understand my situation, I feel that I am very much part of the group. This session has become the highlight of my week. I know that, wherever my body is at that time, these sessions are a safe space where I will not be judged, run by people who truly care.