Information, Support and Encouragement
The internet is full of useful resources, but often they are so well hidden among the many millions of web pages that you can struggle to find what you are looking for. Here is a collection of websites that can offer information on research, how to book an accessible holiday, new hobbies that may be beneficial for your health, and online support networks.
Stitchlinks: www.stitchlinks.com/
Stitchlinks is an organization set up by former senior physiotherapist, Betsan Corkhill, to encourage people in chronic pain to get knitting and stitching. Betsan believes that these activities can stop the various thought cycles that people with chronic pain can get stuck in; they stimulate the imagination and trigger positive thought processes. You can experience those feelings of anticipation, excitement, achievement and self-esteem, so often lost in the haze of coping daily with chronic pain.
The website features many ideas to get you started, along with copies of previous newsletters, health information, the latest research into how knitting and stitching is beneficial for your health, and a shop through which you can purchase your cross stitch packs and posture aids. A lively forum provides friendship, encouragement, and support from people around the world who share your enthusiasm for these creative activities.
The DIPEx Project: http://www.dipex.org/
This unique, award-winning website allows you to read or listen to interviews with everyday people discussing their own experiences of health problems or health-related matters. Just enter “fibromyalgia” into the search engine and you can choose to listen to different people talk about various aspects of living with and coping with fibromyalgia. They talk about treatment options, interaction with doctors, the difficulties with exercise, problems with relationships and tips on nutrition. If you find you have questions you can log on to the forum to chat to others with the same health condition as you.
The website also features reliable information about many different illnesses aimed not only at patients, their caregivers, family, and friends but also for health professionals.
DIPEx was created by Dr Ann McPherson CBE and Dr Andrew Herxheimer following their own experiences of illness and their difficulty finding other people to talk to who really understood what they were going through. They knew all the medical information but wanted to know what it was like to live with these conditions. The site certainly offers a unique resource and one that can offer a great sense of encouragement and support.
Travel Information: www.loc.gov/nls/reference/circulars/travel.html
Want to explore America, Europe, the world—with accessible options? This website offers a myriad of solutions. It is a site orchestrated by The National Library Service for the Blind and Physically Handicapped based in Washington D. C. Information on travel solutions is just one aspect of the topics covered. This is a site that will definitely be on my favorites list.
Find information about organizations that:
- can tailor your holiday, taking into account all your individual needs
- can offer escorted tours especially for people with mobility needs
- can rent you disability equipment for your travels
- can provide you with accessible travel guides
- can offer information for traveling by air, by car, by sea or by bus, or even accessible vans
With this kind of information at your fingertips you can conquer the world—whatever your mobility needs.
Pubmed: www.ncbi.nlm.nih.gov/entrez/query.fcgi
If you want to find the latest research information on fibromyalgia, then this is an excellent website to try. It is a resource provided by the US National Library of Medicine and includes lists of all the articles published in medical and science journals from the 1950s. A tutorial explains how it works and how to get the most out of the search engine. For example, you can search by author or by topic and restrict your search to certain date boundaries; you can link two topics together, like fibromyalgia AND hormones, to discover any connections between the topics.
Most of the articles cited come with an abstract that summarizes the research paper, giving you an idea of what the article covers, a summary of any results and the conclusions the researchers came to. Sometimes there is a link to the full text, though often this has to be purchased from the journal which originally published the article. There are also links to related articles so you can view other studies on the same topic.
I’d also like to suggest a couple of books I think stand out from the crowd.
The Selfish Pig's Guide to Caring
This delightful book by Hugh Marriott is aimed at the friends and family who lovingly care for us. Hugh, a caregiver himself, deals with the feelings of fatigue and isolation, dealing with officials who fail to understand, and coping with those everyday frustrations of caring for somebody that you love.
This paperback book has 350 pages with numerous humorous illustrations and can be purchased from Amazon priced at $11.36.
Sacred Space
Sacred Space is written by Reiki healer and reflexologist Elizabeth Bailey. In 2003 Elizabeth and her son were diagnosed with CFIDS. Since then she has been using her skills as a therapist to help her cope and move towards recovery. In her book she shares her experiences and the valuable lessons she has learned. I think a paragraph in her first chapter summarizes her philosophy:
"We are human BE-ings not human DO-ings and we all need to top up our energies every day and for the rest of our lives. When we learn to be open enough to discover our own mind, body and spiritual balance, it is possible that we can live happier, healthier, more fulfilling lives. Hopefully then, we can look back and realize just how far we've come in learning how to really live our lives to the full and except that it's okay to sit quietly and simply just to 'be'."
The book centers on how to recover your body's balance: homeostasis. It is all about balancing the sympathetic nervous system and the parasympathetic system, the two arms of the autonomic nervous system that control body activities that are not consciously influenced. Interestingly, research has shown that these two systems are out of balance in fibromyalgia, so Elizabeth's practical advice and guidance about how to relax, meditate, improve your sleep and exercise is as relevant to those with fibromyalgia as to those with CFIDS. If you are looking for a book to help you stop rushing around and to focus on gently listening to your inner voice and body rhythms, then this is the book for you.
This book can be purchased from Amazon priced at $14.49.
