Results of the Self-Help Survey: Part One

It’s taken me a while to publish the results of my survey, partly because I’ve been waiting for more responses. Although the survey generated more interest than any of the other blog posts, I’m afraid I only had 3 responses. I have added my answers to this survey so that it now represents 4 people. Huge thanks to the 3 people who did take the time to respond! One set of responses are copied from a response published on the respondents own blog post at sky blue river.
As there are so few responses I thought that it would be most interesting to publish it all, in stages. I simplified the survey to try to encourage more respondents so there isn’t information from 4 people on all question. I also invited people to only answer what they wanted to. You’re welcome to add your perspective in the comments section! Or if you would like to answer one of the versions of the survey you can find them here. I’d like this blog to be as helpful as possible. As we are all unique I think it’s really important to understand other people perspectives!

Who answered the survey: 4 women between the ages of 23 and 45
2 responses to the longer survey, 1 to the simplified version plus my answers

Percentage that each respondent had improved if 0% was their worse and 100% totally better
100%; 100% first time and 60% second time; 50%; unknown

Severity at worst: severe; moderate; moderate; unknown

Severity now: completely healthy; mild; moderate; unknown

Sources of information about illness management:

CBT counsellor, Complementary therapists;
Mostly from other sufferers on the Internet;
My partner and now husband did all the research, I was too ill. His main source was the Internet, where he cross referenced advice on complementary therapies, diet and supplements. And looked for accounts of others who had recovered. Information about pacing from a consultant came 18 months after lifestyle changes had already been made;

Reading books, trial and error, acupuncturist, reading about alternative therapies, occupational health doctor;

Best advice received:
I never really had a lot of advice, it was more a journey; I guess the most important thing I learnt was that how my stress levels were exacerbating the symptoms;
pacing, pacing, pacing;
Do everything with only 50% effort;
All of it, lots of little things add together to make a big difference;

Managing the illness:

As well as various medications, I have stopped drinking caffeine and alcohol and I pace;

Regular well managed pain relief during bad times to avoid low mood and lack of sleep. Pacing: Small activity with lots of rest. One bigger activity with days of rest either side. Healthy diet: Regular meals and healthy snacks. Reduced caffeine/ sugar, no alcohol. Prepare large amounts of food when having a good day. Freezing in smaller portions so don’t have to cook on bad days. Internet shopping and delivery. Hiring a cleaner every other week to do the bigger cleaning tasks. Regular massage to reduce muscular pain, improve mood, relax. Microwave heated bean bags for aches. Frozen peas for pain. Muscle rub helps too, especially with my lung muscles when its effort to breath. Routine: Trying to do the same things every day at the same time. Try to avoid moving from routine on a good day (easier said than done!) Keeping a diary/ lists so not to forget things to do. No late nights. Counselling to help come to terms with the loss and negative feelings that the illness brings; to have a space to moan where you’re not judged; space to explore ways in which you can change to your life make the most of it. Learning to put your pride a side and ask for help. Putting yourself and your needs first. Being assertive with this e.g. at work. Prioritising what is important, and not stressing about what is not. Reduced technology use e.g. length of time using TV, computer, phone.

Matching activity level to energy level, pacing, asking for help, valuing small achievements, appreciating the little things in life, healthy food and supplements, routine, paying attention to a good sleeping pattern, gentle exercise, relaxed effortlessness, T’ai chi, yoga and meditation.

Most important factor contributing to improvements in health:

Ultimately my health improved because I changed the things that were causing me environmental stress and most importantly learnt to deal with the psychological stress.

Coming to terms with the illness and accepting my limitations.

Acceptance, learning to live within my changing daily limitations and learning to approach life with relaxed effortlessness.

Time, patience and self-love

More in a couple of days!

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