Sunday 24 October 2021

2021 AGM - Mindfulness, Acceptance and Values

The 2021 AGM presentations followed the path established in 2020, with talks scheduled after the AGM on separate days. Our third presentation was Ray Owen who talked about mindfulness, acceptance and values, particularly using mindfulness with acceptance. 

You can see the video of the presentation here: https://www.youtube.com/watch?v=KnaXYQFqpXc

Concepts

The concept of mindfulness originates in a variety of eastern philosophies, faiths and religions - particularly in Buddhism. Ray noted that the concepts pre-date Buddhism, and were in early Hinduism. There also are some overlaps in Christian and Islam, although these overlaps are not using mindfulness in the same way. 

The key person bringing mindfulness into the current usage was Jon Kabat-Zinn. This stems from his realisation that there are many people who have to live with health conditions and illnesses for which there are no medical interventions - and therefore doctors have no treatments which they can offer. Jon effectively re-purposed some aspects of Buddhist practices into non-religious and healthcare settings.

What is mindfulness?

Mindfulness is paying attention in a particular way. Attention is paid on purpose, to the present moment (rather than the past or future), and noticing (rather than thinking about). The aim is to be able to come back to noticing things rather than thinking about things.

Mindfulness is practiced in various classes and religious settings, but there are are also activities where you practice mindful behaviour naturally. Ray gave examples of rock-climbing, and situations where you get absorbed in activities like painting or gardening. Other situations where mindful techniques are used include tai-chi and yoga. Ray noted that whilst mainstream images of yoga and tai-chi are idealised, these practices can be followed by almost anyone.

Aims of Mindfulness

Mindfulness is similar to calmness, however it doesn't mean that difficult stuff goes away, it is more like being in the eye of the storm and being able to observe the situation in a clam way.

Mindfulness can reduce the minds tendency to wander, which it often does, sometimes to unhelpful places. It can also reduce the tendency to have auto-pilot reactions, and allow us to step in and choose how we react to a situation. It also makes us better at noticing and being aware of things.

Our minds naturally wander from one thing to another. Being mindful is about noticing where your mind goes and choosing where to focus your attention. You can be in control of where you focus your attention and can bring your focus back to the present moment. You choose the next step which suits you best.

Adopting mindfulness requires practice, so that you are able to deploy these techniques when you need them. Many practice mindfulness every day, perhaps for a few minutes setting yourself up for the day.

Acceptance

A question often asked is "what if I don't like the present moment?" - You can choose to avoid the present moment every now and again, but doing this too often is not helpful. This brings the concept of acceptance to the fore. It is beneficial to accept that difficult thoughts or feelings can occur. Having a range of feelings is natural, there are good reasons for having a range of thoughts.

It is your minds job to look out for things, to solve problems and keep track of important things. People are bound to have worries, doubts and painful thoughts about some of these topics. The issue is how we choose to react when these thoughts occur. Having thoughts about giving up, about trying to solve problems outside of our control or avoiding difficult topics can cause more disruption than having the thought in the first place. However, trying not to think about these things often makes the thought stronger.

The mindfulness approach is to make room for these thoughts, but not to let them take over. Bringing your thoughts back to the present moment can help with this.

Values

One goal for life could be to live life with fulfilment, where we spend out time doing what matters to us.

If you dont know what matters to you, then think in single words about how you want to behave to people who are important to you - these are your values. Examples might be around trust, fairness, honesty and so on.

Values are what we stand for in life, how we want to behave, what sort of person we want to be, and what sort of strengths and qualities we want to develop in ourselves.

Acting on your values is doing things which fit within those values. These actions can bring about some difficult feelings, and mindfulness approaches can help here.

Conclusion

The three topics covered here are interlinked. The mindfulness side helps you be aware of what is going in inside you and around you. The acceptance side allows you yo make room for thoughts without letting them take over, and the values side helps you to know what matters to you. Each of these three things are linked to each other, making a triangle of steps which can help.


 

  


Sunday 17 October 2021

2021 Survey Open

I am pleased to announce that my 2021 survey is now open. This year questions are available in English, Italian, Dutch, French, Spanish, Portuguese and German. These languages are the same as last year, with the addition of German. Click on the relevant link in the table to below to access the questions in that language.

The focus for this years survey is: 
  • Relationships
  • Information
  • Acceptance
  • Life with HSP, including some bladder questions.
Similar to recent years the analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2021, with results published on Rare Disease Day 2022 - Monday 28th February.

As with previous surveys only "name" and "country" are required questions. Answer all others that you want. 


15th December - Now over 500 responses!

Data update - Selected results from a combination of the English and German results on 8th December.

83% of people with HSP consider themselves to be disabled, which is a similar result to previous years.

Two thirds of people are completely comfortable discussing their HSP with their partner or family. Some 6% are not comfortable discussing this, with the remainder being comfortable some of the time.

Almost two thirds of people are in a long term relationship. Of these, three fifths say that their HSP does not affect their relationship. Three in 10 consider that their HSP affects their relationship negatively and one in 10 consider that their HSP has a positive effect on their relationship.

About 85% of people identify that they have bladder issues. Of these, just over a quarter of people take no action to control this, and almost a third take medication. Roughly one seventh indicate they drink less than they used to and a similar number say that they train their bladder muscles. The majority of the remainder use a catheter, with a small number of people getting Botox injections. Many people indicated that they also use pads, incontinence pants or nappies.