A big thank you to all of you who have been filling out my questionnaires! They are really helping me to get a great idea about what you most want help with in terms of living better with your chronic illness. I believe that there are 8 steps towards living a great life despite chronic illness and I am exploring each step with a separate questionnaire. This second questionnaire looks at avoiding the things that make your illness worse, or damage limitation. You can see the results of the first questionnaire about energy management at this link. I’ve also posted a list of links to posts I’ve already written about some of the priorities you highlighted in terms of improving energy management skills.
I’ve had 17 responses so far to my damage limitation questionnaire, with all except 2 citing ME/CFS, ME, CFS, CFIDS or Fibromyalgia as their illness. The other two were undiagnosed. There was a huge range in the length that the illnesses had been suffered, from 1 to 41 years, the average being 12 years.
The first questions asked respondents to rate themselves on scales of 1 to 10 on how well they thought they understood the things that made their illness worse, and how skilled they felt they were at avoiding those things. Answers regarding understanding fell across the whole range from 1:I find it very confusing, to 10: I have a clear understanding; with the average rating being 5.5 and the most common rating being 8. Answers about skill levels fell across the range from 1 to 9 with 1 being not very good at all and 10 being very skilled. The average rating for this question was 5.1 with the most common rating being 7. These scores suggest that even with a great deal of experience, chronic illnesses like ME/CFS and Fibromyalgia are difficult to understand and even more difficult to manage! Unfortunately our normal life skills are completely inadequate when it comes to understanding and avoiding the things that make these kinds of illnesses worse. Its only once we’re faced with such an illness,that we realise we need a new skill set and unfortunately there’s often nobody around to teach them. That’s where I think life coaching has a role to play! 16 of the 17 respondents answered that they would like to get better at avoiding making their illness worse.
There was a huge range of responses to the question ‘What do you struggle with most when it comes to controlling the things that make your illness worse?’ Some common themes included:
- Stress was mentioned 6 times, the stress of external events that are outside your control, the stress of meeting expectations or commitments made to others, and financial stress were all cited.
- Social events and saying no to them especially when you miss being with people was mentioned 4 times
- Issues surrounding working out which foods to avoid and sticking to an appropriate diet were mentioned by 3 people.
- Emotional difficulties, such as feeling unworthy because of an inability to be productive, allowing tension to build up by trying to ignore problems rather than face them full on, or dealing with a perfectionist personality were mentioned 3 times
- Energy management issues were mentioned by 3 people
- Lack of understanding was mentioned 3 times including the difficulty of explaining to others something you don’t really understand yourself.
- Needing to work/ meet work comittments was mentioned twice.
Other concerns included:
- Accepting a longer period of recovery from everyday infections
- Keeping some kind of life whilst avoiding/limiting exposure to artificial lights/heating systems/many chemicals etc when out and about.
- Not being able to control my environment because of lack of co-operation from others
Respondents were asked which skills they would like to improve by giving a list to check:
- managing sleep disturbance, 69%
- avoiding overstimulation, 69%
- recognizing what makes it worse, 63%
- minimizing toxic overload, 63%
- stress management, 50%
- pain management, 44%
- minimizing risk of infection, 31%
- having a purposeful life
- my pets are causing sleep disturbance & that is so hard to control!
There were a variety of responses to the question ‘What would you most like help with so that you can take more control over your illness?’ with a couple of common themes:
- Proper relationship with GP’s , NHS etc. /How to get the best from the NHS
- Pacing myself./ Avoiding over-doing it./ Help calming down and not over stimulating myself.
- Coping strategies./ Suggestions on how to feel happier./ Doing nurturing things
- Staying part of the human race, not feeling a freak
- Financial stress.
- The cleaning!
- Managing mental stress/anxiety, helping others to understand without it turning into a pity party.
- Knowing what supplements are needed & worth the money. How do I know if a supplement helps?
- A healthy diet and stress management.
- Employment help and advice
Another question asked ‘How do you imagine your life would improve if you were better skilled at avoiding the things that make your illness worse?’ The answers ranged from a tentative ‘maybe’, through various practicalities:
- having less pain
- being able to avoid adverse reactions
- being on a more even keel
- perhaps not being house or bed bound
- more good days gradually improving what I can do
- Gradual decrease in symptoms with a corresponding increase in functionality.
A number of changes in emotional wellbeing were also mentioned:
- feeling better about myself, life would feel worth living again
- I would be happier and it would make it easier for me to cope day to day.
- A better quality of life and increased self-worth
- I would be happier/less stressed, living a more peaceful life at my own pace rather than feeling obligated to give in to others demands.
- A much greater quality of living, more optimism and better perspectives.
- That I would feel like myself again and not a shadow.
Finally I asked again what kind of help would appeal to you and what kind you would be willing to pay for.
- Reading suggestions in a blog post, appeal 41%;(Not offered as a paid option as my blogs are free!)
- Self-study work books with access to an online peer support group, appeal 41%; pay for 30%
- Group coaching, including weekly live coaching calls, work books, access to an online coaching and peer support group, appeal 23%; pay for 20%
- Individual coaching, appeal 23%; pay for 30%
- Other appeal
- Self-help group to share experiences/ideas
- Audio program
- I don’t think anyone can help
- I already have peer support etc
- Other Pay for
- no longer know as have already paid for a lot of things – no longer employed and lose ESA next month.
- Audio program
- no amount of coaching/therapy is going to help
(30% indicated that they wouldn’t pay for any kind of help)
Next week I’ll post another list of links to blog posts I’ve already written that address some of the issues that have come up in your responses. Also Look out for my third questionnaire which will be coming soon!