Because I want to be able offer my help in the most effective way possible I feel it’s really important to ask what you need help with and what kind of help you want. I’ve identified 8 steps towards living a great life despite chronic illness and I’ll be consulting you about each of the steps. I’ve already been asking about the first step: mastering energy management skills and I’d like to share what I’ve learned so far. (If you haven’t responded yet to this questionnaire I’d still be really interested in hearing from you – the more I can learn the better.)
So far I’ve had 32 respondents suffering from a variety of energy limiting chronic illnesses. Although the majority mentioned M.E, ME/CFS, CFS or Fibromyalgia, others mentioned included hypothyroid, POTS, Sjögren, hypermobility, anxiety, depression, pelvis issues, rheumatoid arthritis, arthritis, endometriosis, neurocardiogenic syncope and diabetes. There was a huge range in the length of time that the illnesses had been suffered from 3 months to 30 years. The average length of illness was 10 years.
The first questions asked respondents how skilled they felt they were at energy management and whether they would like to improve their skills. The answers fell across the whole range of the scale from 1 to 10 with 1 being ‘not very good at all’ and 10 being ‘very skilled’. The most common answer was 7 (28%) and the average rating was 5.5. Of the 32 respondents 29 (90%) said they would like to improve their energy management skills.
Respondents were asked which skills they would like to improve by giving a list to check:
- 66% (21) marked ‘keeping within your limits’
- 66% (21) marked ‘staying relaxed’
- 56% (18) marked ‘saying no to other peoples demands’
- 50% (16) marked ‘choosing and balancing how you spend your energy’
- 47% (15) marked ‘doing things that improve your energy’
- 43% (14) marked ‘recognising your energy limits’
- 43% (14) marked ‘avoiding energy draining situations’
- 43% (14) marked ‘using pre-emptive rest’
- 36% (12) marked ‘pacing’
- 9% (3) marked Other adding:
- ‘Exploring nutrition and digestions as a source of both energy drain and uncomfortable energy ‘surges’’
- ‘Saying no and not losing friends’
When asked what people struggle most with in terms of energy management, a number of themes emerged: (I’ve listed them roughly in order of how often they were mentioned)
- Difficult feelings (guilt, anxiety, disappointment, loneliness) around having to say no to, or cancel social arrangements/seeing people/having visitors.
- Discipline/not doing too much when energy is good
- Balance and choosing how to use energy most effectively
- Recognising signs of low energy, knowing when to stop, staying within energy envelope, and resisting pressure from others to do too much
- Difficulties with meeting the needs of work and family and the various stresses that pop up in real life.
- Feelings of frustration/ anger/ guilt /sadness and low motivation especially when energy is low.
There were a wide variety of responses to the question ‘what would you most like help with in terms of energy management?’ It seems that we all have different priorities in this respect. I have grouped the responses into themes and listed them roughly in order of how often they were mentioned.
- Spending energy wisely/ finding fulfillment with limited energy
- Recognising limits/ when to stop/not totally wearing myself out all the time/ realistically estimating how much energy things will take/ measuring time and energy
- Practical help with housework or bills etc.
- Balance/ balancing the need to spend time with or talk to people against the suffering involved
- Strategies to build/ improve energy/ perhaps with nutrition or exercise
- Managing emotions, particularly anxiety
- Peoples understanding/ getting the family to understand well enough to accommodate my needs
- Low motivation when energy is low
- Achieving consistency
- Understanding energy management better
- Saying no to other peoples demands
(Next week I’ll use this list to direct you to all the posts I’ve already written on these subjects.)
I offered respondents various forms of help and asked what kinds would appeal to them and what kinds they would be willing to pay for.
- Reading suggestions in a blog post: appeal 60% (Not offered as a paid option as my blogs are free!)
- Self-study workbooks with access to online peer support group: appeal 33%; pay 21%.
- Group coaching including weekly live coaching, workbooks and access an on online coaching and peer support group: appeal 33%; pay 21%
- Individual life coaching: appeal 33%; pay 28%
- 9% found none of the help appealing and 28% indicated that they would not be willing to pay for any of it.
- A book and/or hangouts/podcasts… your tips and/or interviews with experts/specialists, etc.
Finally I asked respondents to imagine how life would be different if they were really good at energy management. How would they feel? Again I’ve grouped similar responses and listed them roughly in order of how frequently they came up
- More relaxed, happier, more fulfilled, more content
- More productive/able to do things/ small tasks/ function normally sometimes etc.
- More in control
- Less anxious/ stressed/ depressed
- More confident
- Less ups and downs
- More like old self
- More creative
- Less pain
- Able to plan ahead
- Able to fully express enthusiasm for living
- More consistent energy/feeling well
- More time and space in life
- Sense of achievement
- Amazing/no limits
- Able to exercise
- Would feel very frustrated because not much would get done.
- Wouldn’t make much difference I still wouldn’t be cured.
I’d like to thank all of you for helping me with this and any future questionnaires. I will endeavor to create a program that will truly meet your needs!
I’d be really grateful if you could rate this article using the five stars that sit below the list of posts you might also be interested in.