You're almost certainly feeling overwhelmed. It's quite possible your doctor has very little experience with this disease and hasn't given you much of a treatment plan, if any at all. So here you are, armed with google and suddenly you're bombarded with way more information than you can possibly make sense of.
But here are the steps I would advise any newly diagnosed person to follow:
- Take an online self-help course. This is immensely helpful both in educating yourself about your disease and connecting with others. If money is tight, you can use the free, self-study option at Treating CFS and Fibromyalgia.
- Throw away the idea of 'toughing it out'. That is the worst thing you can do. Baby yourself, take it easy, nap when your body asks for naps.
- Read The Spoon Theory by Christine Miserandino. Print it out. Give it to friends and family members who don't understand.
- Accept that many of them still won't get it. Yeah, this part really really really sucks.
- Learn to cope with well-meaning advice. You will get lots and lots of advice about diets, supplements, therapies, alternative medicine, etc. Ignore anything that claims to bring people back to normal in a time frame of months. There is no magic bullet. If there was, we'd all be using it. Ignore anything that requires excessive effort, because you simply don't have the energy for it. Ignore any kind of Multi-Level Marketing scheme. Ignore anything that sounds crazy to you. Anything that's left, google the name of it, along with the word 'scam' and see what comes up.
- Trust your own judgement. What's left after all of that will probably be mostly the types of therapies that would benefit anyone, well or sick, such as basic nutritional advice, meditation, cognitive therapy, and physical manipulation therapies like chiropractic or massage. If any of these seem right to you, try it. If not, don't.
- Learn to cope mentally. Buy, beg, or borrow the book How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. You don't need to be Buddhist or become Buddhist to use it. This is the most important book I've ever read about coming to terms emotionally with being chronically ill. If you're undecided or can't get hold of the book, read Toni Bernhard's blog Turning Straw Into Gold.
- Learn to cope physically. The best book I've found for practical day to day advice on getting through life when housebound or bedridden is Severe ME/CFS: A Guide to Living by Emily Collinridge. Though it is primarily geared to the severely ill patient, anyone with ME/CFS will likely find it helpful.
- Get involved in advocacy only if you really want to and your health allows it. There is a lot of information available about current research and many bloggers and forum goers who are involved in fund-raising and political efforts. Some people find this interesting and invigorating. Others find it stressful and unpleasant. If you're in the latter group, it is ok to ignore the entire topic. Really, you have my permission. Your job is to care for yourself. It is not to cure ME/CFS. It does not make you a bad person if you do not have the physical or mental energy to be an advocate. If it really bothers you to say no, tell yourself that you'll reconsider in 6 months, or when you reach a certain health target, or when you've finished transitioning from your healthy life to your sick life. It took me three years of being ill to feel like I was ready to start this blog.
- Connect with other patients. There may be a local self-help group, but in general, because ME/CFS patients often find it difficult to leave the house, most groups tend to be online. They can be formal groups, such as the email groups formed in the CFIDS & Fibromyalgia Self-Help Program, but there are also forums where patients gather, facebook groups, and blogs with comment sections. The important thing is that you know that you aren't in this alone.