You’ve just been diagnosed with a chronic illness, and are dizzy with the thought of it. The learning curve is steep. Listening to your physician, and perhaps reading the literature that she or he has given you are both good first steps. The problem is, that going only that far leaves you in the position of waiting, and of letting time pass without action. One of the important things that many of us have learned is that letting time pass without fighting full out allows your disease to progress. The longer it progresses, the harder it seems to be to turn it around, so that you are chasing it, instead of it chasing you.
What’s a body to do? Here are some ideas from people who have been through it.
First, don’t consider your diagnosing physician the be all and end all of your medical care. Begin to assemble a team of people to support you. Start with your primary care physician (PCP) and your specialist such as the neurologist (neuro) or endocrinologist. Look into what other medical specialties might know things to help you. Add to that some practitioners of alternative treatments such as a chiropractor (chiro), acupuncturist, massage therapist, physical therapist, herbalist or naturopath.
Now, think about your support. Who else needs to be on your team from the get-go? Your family and friends are critical. Imagine, if it’s hard for you to adjust to the new diagnosis, it’s doubly hard for them. They don’t feel what you feel, and their fears about loss are different fears than yours. You might fear a stiffening body or a wheelchair in your future. A person in your family might be thinking about the loss of your contributions to family life, and the contributions you make that he or she will have to make up for somehow. Of course, if you’ve been covering your losses well, your partner might not even be thinking of losses, but just of a bit of time out for the doctor’s appointments, some medicine, and life back to normal. It will not be normal, even when it appears to be so.
When you’re ready, take a look on youtube and other video sites for short films about your disease by people who have it, or by the organizations that do work supporting research into it. Listen to voices of experience. Come back to listen again in a few months, once you have a deeper understanding of your illness.
Once you find some videos, ask your loved ones to watch them with you, or to watch the videos and then talk about them with you. It’s important for everyone to learn that even on days when you look well, this disease is still going on inside of you, and you are still spending energy in the fight against it.
Some diseases take a lot of energy from you. For example, multiple sclerosis can begin to cause fatigue without notice. Suddenly, you could be sleeping in the middle of work or play. It’s important to begin to ration your energy right from the start. Ease up a little on your commitments, and plan time to rest and heal in between activities. It’s okay to use the power scooter at the grocery store, instead of pushing the cart. Learn to save your energy for what counts, and take advantage of things that will lower the stress on your body. Part of conserving energy is learning to say “No.” Balance is more important than ever, and you are in charge of making sure you have some equilibrium in your life.
Some diseases will cause aches and pains. Your doctor will probably have some prescriptions to try. There’s also a lot you can do with diet and nutrition to minimize pain. Don’t wait until your illness is crippling you. Make dietary adjustments as soon as you can. You can slow the progress of many diseases just by changing what you eat.
Disease usually occurs and grows when the body is in a state of inflammation. You can change that by eating and anti-inflammatory diet. I'll go into some food issues tomorrow. For now, search for gluten free, Dr. Wahls', Dr. Fuhrman's, Dr. Jelinek's and Dr. Swank's diets.