At our June Support meeting on 24 June 2023, we discussed the challenges faced with management of our chronic illness, using the analogy of athletes preparing for the Olympics. In order to progress, an athlete can be faced with setbacks as they commence training for an Olympic event. They may require a personalised fitness regime to overcome injury, or to become stronger such that injury does not see them regress physically or mentally.
Chronic illness management requires a similar mindset. How do we train our bodies and minds to become more fit and adapt to a new way of being in the world? Do we need to organise a schedule of thoughtful responses/actions in order to withstand the ongoing overwhelming flares and symptoms of our illness? Whilst we cannot always change what happens to us, we can always change our response to what happens.
There were many helpful suggestions shared by members as to how they support themselves through difficult periods of illness flares, and these are summarised below.
Some links are provided in the text for illustration.
- Recognising the ‘drop down’ in mental and physical well-being is imperative in terms of timing of response. This can take time, as we get to know what our triggers are and how to avoid them. Some members reported relief from the use of breathing techniques, particularly the square breathing technique, listening to binaural sounds and/or music, and making lists in order to provide some structure to one’s day.
- Distraction works well for many. Becoming involved in an activity that provides positive rewards, such as art, writing poetry, practising gentle exercise or spending time with trusted friends, can help take the focus away from feeling unwell.
- Breaking down tasks into manageable amounts can assist with providing a sense of achievement, no matter how small the task. Many of you may have heard of the Spoon Theory as an aid in managing limited energy due to chronic illness.
- Living in the present, not focussing upon the future. This enables one to potentially bypass anticipatory anxiety, which is not always helpful for a positive state of mind.
- Meditation practises can help to achieve the above and be deeply soothing. Petrea King, who addressed our TAMS Conference in 2016, led us through some meditations designed to achieve a state of present awareness and relaxation. Petrea is no stranger to chronic illness, as she is a survivor of acute myeloid leukaemia from over 35 years ago. She established the Quest for Life Foundation in 1989, following her inspirational journey to recovery. She follows the Four Cs – Keys to Peace of Mind and Resilience.
- Modifying your lifestyle. For some people, this may mean changing jobs, and/or decreasing the amount of hours worked, or even leaving a stressful work environment. For others, it may be changing the way you do things, and allowing time for rest and revival on a daily basis.
- Medical support/medication. Finding the right medical team can sometimes be a challenge. It was acknowledged that appropriate medical support and medication(s) are vital on this journey.
- Gentle exercise that does not stress the body may help with maintaining muscle tone and flexibility as well as enhancing mental health. These suggestions were made – The Feldenkrais Method and Alexander Technique.
- Adjustment to life with a mast cell disease is recognised as taking time, as with any chronic illness. The journey to diagnosis can be fraught with anxiety, however there is hope.
- Communicate with trusted others in your supportive circle. Remember, this is your journey, and you are not defined by the expectations of others who may not understand the new challenges you are facing.
We look forward to meeting with you at our next meeting on Saturday, 23 September, 4–5 pm.
TAMS Support Chair