Live With Chronic Fatigue or M.E
Also known as Post Viral Syndrome, Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). Although these conditions are all different to some extent, many of the symptoms and their effects on lifestyle have a lot in common. Chronic fatigue is also a symptom in fibromyalgia and many other disorders, including some skeletal problems that make movement more difficult.
This article, How to Detect Chronic Fatigue, may also help.
Steps
- Pace yourself. It can be easy to do too much at a time, especially if you're used to being able to do more. Take regular rests until you feel fully ready to go on. If you're feeling the fatigue warning signs, stop. Don't wait for them to get worse. Be ready to stop when you need to and don't drive yourself into the ground over anything, even activities of daily living. Pushing when it's too much can cause you to lose a lot more time recovering from the overexertion than you would've spent just resting when you need to.
- Do not judge your activity levels in relation to other people's. Ever. Only measure success against your own past efforts. Be prepared to accept a completely random level of physical ability. You may feel almost like normal sometimes - seize those moments to do things that are important to you or that you missed most.
- Visit your doctor regularly. He or she will be able to treat you more confidently if your medical records are up to date. You'll also build trust and understanding. It's also important to find the right doctor, one who understands the physical nature and severity of the illness.
- If your primary physician is not experienced with chronic fatigue, first visit a specialist. Then find a primary care physician who has other chronic fatigue patients. It's very common for primary physicians to be insensitive and they may give bad advice if they don't understand your limitations. A doctor who's willing to learn is all right, but you may have to put up with that doctor's trial and error process of learning until he or she does understand your condition. The more rare your condition is, the likelier specialists will give you better, more useful advice and treatments.
- Do not try the same treatment, if it failed. Many primary physicians have a regular series of advice, treatments and regimens mostly geared toward sedentary, normal people improving their health. These can be too difficult and humiliating, so don't torture yourself trying what didn't work again and again.
Taking long walks does not help chronic fatigue, but may mean that you can't keep up with the dishes or brush your teeth for a couple of days resting up. - Keep personal written records of all treatments, regimens and medications that had adverse effects. It's a long slog to find the right medications for any chronic illness and you don't need to repeat failed trials.
- Bring a healthy [family member] caregiver to your doctor appointments who can explain your condition and bring the doctor up to speed on the results of your medications and treatments. Work with your caregiver before going so that you're sure he or she has the information memorized. It gets complex sometimes, and doctors may not listen to what a sufferer says. They will listen to the healthy people who live with the patient; so bring someone else as your interpreter -- or you may be ignored while the doctor tries to judge your tone of voice or body language for clues or symptoms. They will always look for the most common cause of symptoms, which is why chronic fatigue is so often mistaken for lack of activity, exercise and will power.
- Eat the right foods.
- Keep a food diary. Compare what you've eaten with how you feel immediately afterward and how you feel later in the day. Fibromyalgia and some other chronic fatigue conditions often cause food sensitivities and allergies. Until you know which foods to avoid and which ones give you energy, chart the results of everything you take in. Some healthy foods like milk, whole grains with gluten and so on may give you unexpected problems and have to come off your list even if they'd be good for anyone else. Don't feel bad about it, this is just part of living with the disease. You're not a fussy eater when you have real allergies and sensitivities.
- Avoid foods that give short bursts of energy, such as sugar and caffeine. It's easy to instinctively go for foods that are easy and give a short term buzz - coffee and sweet-rolls, tea and biscuits, sweet chocolate, and so on. Unfortunately, the times that you're feeling the most tired are the times you should avoid these, as the burst of energy will be followed by an energy crash that will make you feel a lot worse in the long run.
- Enjoy foods that offer slow-energy-release, such as starchy foods, proteins including beans and peas. The effects are longer-lasting, and you'll be healthier in the long term.
- Eat raw fruits and vegetables, because uncooked foods are quicker, easier to prepare and contain more nutrients - win-win!
- There are many foods that have properties that are especially good for you - including sprouted seeds and pulses, very dark chocolate, iron-rich foods, anything with high levels of vitamin B12...
- Limit stress. Being chronically ill is stressful enough in itself, and many doctors believe that stress could be a contributor to CFS symptoms. So, when at all possible, make things easy on yourself by keeping your schedule flexible and your goals attainable.
- Consider eliminating television news. News stories are presented in a dramatized way like a cop show, for maximum suspense. The video also affects your body, as if you were an eyewitness to the hotel fire or in the war zone. Reading news online or in a print newsletter distances it and may give you more information than can be condensed into a two minute television report where they rely mostly on shocking video.
- Consider eliminating television in real time in favor of TiVo or Netflix and other sources where you can filter the commercials out. Interruptions every three minutes can be stressful, like living with a screaming toddler. The volume goes up and your train of thought is disrupted. This minor aggravation for most people can add up to a lot of stress during an activity that's supposed to be relaxing! Consider purchasing your favorite shows on Amazon and find various ways to get your entertainment uninterrupted.
- Keep a personal journal. Vent about everything that aggravates you and also write out everything that makes you happy or calm, makes you feel better, lifts your spirits. It's different for everyone but charting what you do every day for a week or several weeks will show you patterns that can let you change your priorities. Dropping an obnoxious acquaintance and spending more time with a casual friend who always makes you feel good whenever you connect can enrich your life.
- Don't argue about your health issues with people in person. Take discussions online to forums where you can express your opinions clearly and relax while getting your views understood without having to deal with being shouted at, people's bad debate tactics, personal insults, criticism and other nasty tactics people use during in person arguments.
- Reduce or eliminate domestic arguments. Find other ways to resolve personal conflicts that do not involve shouting matches. The people you live with may be inconvenienced by this, but they're also inconvenienced a lot more if the stress of a fight over who did the dishes means you can't do them for a week.
- Do as much as you can without stress. Doing a little is better than doing nothing - in bad times it can boost your morale and keep you from getting lethargic, and in good times it can help you to build up your endurance.
- In your personal journal, look for activities you can do sitting down or do when you're not at your best. Accomplishing something that's in reach, like mindlessly sorting through old papers, is still a real accomplishment that will leave you more free time when you have a good day to actually get out into the garden or go out with friends.
- When you're so loopy tired you can't do anything productive, relax with a good book or a computer game. The same time sinks that sedentary people waste their lives in can keep your mind off the fatigue and put you in a better mood. Reading is especially good at bedtime or when you need a nap, a few pages may get your mind off all your stresses and let you sleep.
- Don't be ashamed to rest. The fact is that you're not able to manage as much as others - accept it and don't push yourself too hard. Others had better accept you as you are, because you are dealing with a physical limitation as real as a missing limb. They need to know that, so don't hide it and pretend every things fine.
- Don't make firm commitments or deadlines without explaining to the others involved that it's "as health permits." Most people are understanding once they know the truth, or they aren't worth your time. This is a big favor to them because otherwise when you have a bad day, they could be left in the lurch if they don't have an alternate plan. You will have those bad days, no one can predict the weather or what your body will do next.
- If fatigue affects your memory, always turn down requests to remember something for someone else. "Would you remind me to pick up the milk?" is a recipe for disaster, because you're more likely to forget to remind them than they are to remember the milk in the first place. Remind them of your condition and say something like "Sorry, I can't count on being able to remember my own keys. You probably ought to write it down or put it on a timer in your phone." You can add a joke to it like "My memory is a steel trap - it mangles everything that gets into it." Most people don't mind giving reminders but they get disproportionately aggravated if they asked someone for a reminder and that person didn't remind them. That sets them up to be able to blame someone else (you) for forgetting the milk. It's like asking someone with a bad back to pick up that fifty pound sack - a bad idea all around and a constant source of stress if you don't learn to say "No" to things you can't count on doing easily.
- Identify triggers. Work with your physician or healer to try to identify some things that bring about the more intense symptoms. For instance, many people with CFS have dietary, environmental or chemical sensitivities. The more of these you understand, the better you can live. Some are avoidable, like food sensitivities. Others aren't, but at least you can look at the weather predictions and know whether to even try to make it to an event.
- Explore alternative therapies. Many sufferers have found that alternative medicine has really helped alleviate their symptoms. Acupuncture, homeopathy, Reiki and hypnotherapy to name a few could make a difference; however, remember that every sufferer is different and you may need to experiment to uncover a treatment that works for you.
- Find other sufferers. More and more doctors are recognizing the reality of this illness, which means more people are actively dealing with their condition. There are organizations dedicated to supporting those with your condition, and they can help you to feel that you're not alone.
Tips
- Remember that you are not useless or lazy, but indisposed.
- Check your vitamin D! Take magnesium and B vitamins in powder or liquid form.
- Keep in touch with friends, animals and nature; they will help heal your soul.
- The Internet is a great place to network with others with Chronic Fatigue Syndrome. There are many fantastic blogs, message boards and video postings online by CFS sufferers. Also, that way you can find support without having to leave your home or bed.
- Cut out as many chemicals from your life as you can, go natural ...from to beauty/ hygiene products to household and chemical-free your bedroom and your bed , this is the place where you spend so much time to recover and recharge each day.
- Gentle yoga keeps your muscles healthy and releases the negative energy.
- Memory foam has not been safe for every MCS (Multiple Chemical Sensitivity) and FMS (Fibromyalgia) person.
- Certain medications, including tricyclic antidepressants and selective serotonin reuptake inhibitors (SSRIs), could help, as antidepressants can improve sleep and lower pain, and check into medications that may relieve symptoms of anxiety -- and try other ideas:
- Increase gradual levels of exercise, found to improve the symptoms of chronic fatigue syndrome. Plus one may work with a health professional to identify your understandings and activities that might be delaying your recovery and replace them with more proactive ones.
- Get relief of persistent pain: Acetaminophen (Tylenol, others) and nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin and ibuprofen (Advil, Motrin, others), may reduce pain and fever.
- Check into possible low blood pressure (hypotension). The drugs fludrocortisone (Florinef), atenolol (Tenormin) and midodrine (ProAmatine, Orvaten) may be useful.
- Check into treatment for symptoms such as dizziness and extreme skin tenderness possibly caused by the nervous system that can sometimes be relieved by clonazepam (Klonopin).
- Don't use washing powder (detergent) on your sheets, it's full of chemicals.
- Try organic cold pressed raw extra virgin coconut oil everyday. It gave me a real boost.
- Mayo Clinic's Dr. Brent A. Bauer, M.D. says that taking "a combination of fish oil and evening primrose oil, melatonin, NADH, L-carnitine, and D-ribose — have shown encouraging results in preliminary studies." However, these promising early results aren't yet confirmed by follow-up studies, or the original studies were too small or too short a time to be conclusive.
- Everybody, at some point, has a lesson of life; this is yours.
- Ensure adequate salt intake. Start your day with a glass of water with half to one teaspoon of pink Himalayan or sea salt to give your adrenal glands the support they need.
Warnings
- Do not play Iron Man and try to tough it out. That's a guaranteed train wreck. You can wind up pushing yourself to extreme efforts just to keep up normal activity levels in day to day things like standing on your feet to socialize at a party, only to be so exhausted you can't drive home even though you didn't drink. Or lose an entire week of work to an energetic weekend get together. Like other fatigue, chronic fatigue is cumulative. After an extreme effort (which should be saved for genuine emergencies only), you will need days and weeks of resting up to get back to the levels of activity normal even for you. It gets humiliating, if you can't even brush your teeth at the sink, so don't push it just to seem normal at the water cooler.
- Too much rest can make your muscles weaker, worsening your long-term symptoms. Your goal can be to maintain a moderate level of daily activity and to gently increase them and, possibly, build your stamina over time.
Related Articles
- Live With a Chronic Illness
