FLNA

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Having mystery diseases are stressful beyond anyone’s comprehension. Fibromyalgia, lupus, and chronic fatigue syndrome (CFS or ME/CFS) has a way that takes over your life and leaves you wondering what to do next. Next thing you hear is “you need to change your lifestyle”. Question is how do you prepare for major lifestyle changes and deal with a illness or illnesses that changes you forever. Butterflies it’s time to now learn how to slowly change your lifestyle in order to survive the mysterious diseases fibromyalgia and lu?us!  

Yes “lifestyle changes” is a pretty broad term, not to mention can be somewhat overwhelming. Exactly what do you need to change? How much do you need to change? Where and how do you start?

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First YOU, have to think small. The most important thing to do is break things down into simple but manageable parts. Begin identifying aspects of your life that may be contributing to your symptoms, you can start making positive changes. Everyone experience with Fibromyalgia, Lupus, or ME/CFS is different, so there's no one-suggestion-fits-all approach. Nevertheless, below are some different ideas to help you start making lifestyle changes with the achievable goal of improving your quality of life.

 

Lifestyle Changes:

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Pacing Yourself with Fibromyalgia, Lupus, or Chronic Fatigue Syndrome

Pacing is essentially you slowing down until your activity level is a better match for your energy level. It's a simple concept, but with most of us having hectic lives there is very little downtime, not to mention it's a hard goal to sometimes achieve.

Chronic illness doesn't stop or change the fact that we have certain things that certainly need to be done. Generally what we generally do is push ourselves to get everything completed on good days.

 

Why is Pacing Important?

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Butterflies it’s important for you to understand that Fibromyalgia, Lupus, and Chronic fatigue can truly reduce your energy. When your energy is low, each activity takes a greater effort to get things done. Not to mention it takes a toll on you not only physically, but mentally and emotionally. As you've probably learned the hard way, when you overdo it, you pay a steep price.

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I’m guilty of falling for the “feel good one day syndrome” and push myself hard on good days. I would try my best to catch up on everything possible in one day. I would clean the kitchen, do several loads of laundry, grocery shop, mop, dust, organize, wash the car, and even work in the yard. The problem is when my symptoms would start I'd push myself harder, misleading myself into feeling like I had to get everything done and before I knew it I felt so bad I literally couldn't do anything.

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I quickly realized that doing this only causes setbacks: one productive day can lead to multiple days in the bed. The important thing to ask yourself is “how can I get everything done without exhausting myself”?   Simple answer is pacing yourself!

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Pacing & Knowing Your Body

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Pacing yourself requires for you to know your body and understanding your limits. This helps to keep things in perspective. Most importantly it helps to keep a journal and a symptom log. Here are some questions to help you gage your day:

• What activities impact me most?

• At what time of day do I have the most energy?

• What symptoms are "early warning signs" that I've neared my limit?

• How much physical activity can I handle in a day or at a time?

• How much mental exertion can I handle in a day or at a time?

 

These questions help you learn more about you and allow you to better plan your day.

 

Pacing & Short Activity Periods

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The amount of time you work and rest depends on you having the ability to maintain without over exerting yourself. The objective is to start with shorter time frames that you feel you can handle. Keep in mind make sure you allow time for yourself and allow for 15 minutes it between. Try it for a week and allow yourself time to adjust to the right balance for you.

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Pacing & Scheduled Rest

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You have to get in the habit of scheduling rest periods and taking short breaks in between activities. If this means you have to take a nap, meditate, or just sit on the couch and lounge then take the time to rest. Remember the length of time is something you have to determine for yourself. Setting reasonable time limits will help you regain your strength and equally balance your day.

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Pacing & Routines

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Routines help keep you on track with things that you need to do especially when you have suffered from a lot of brain fog. Create a weekly schedule to help keep you on track with your daily activity. This includes household chores, work, and other daily activities you have. 

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The problem you run into will become your biggest barrier and this is that your condition is unpredictable. The one problem with a routine is you will never know what kind of day you will experience. Your day could be bad or good so your daily routine may end up out the window.

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Dealing with unpredictability, you should always build in flexibility into your daily routine. This allows for you to deal with and accept what type of day you may experience. Prioritize your schedule, and work to help you adjust to those unexpected days.

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Pacing & Prioritizing

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Priorities are crucial to pacing, and having a clear idea of what must be done on each day you have planned.  Remember to prioritize your day with important to least important things to help you remain focused.  

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Feeling overwhelmed? This is when you have to make a list then identify the order of your list. Figure out what is important on your list and absolutely needs to be done. Determine what is most important. In easier terms “needs and wants”.  Remember identify what is important because this will help you prioritize what is important and most importantly not exhaust you.

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Working: How do you do it?

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One of the greatest fears most patients have with chronic illness is, "Can I continue to work?" Having a job gives a sense of independence, and provides things needed. Without income, health insurance, and working relationships you start to feel alone, and not able to identify with the other areas of life.  

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Fact is many patients keep working, perhaps with reasonable accommodations from employers; many change jobs or positions, find a way to work fewer or flexible hours, or look for ways to work from home, but some simply find they can't continue to work.

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Debilitating illness like fibromyalgia, lupus, or ME/CFS are covered under the Americans With Disabilities Act (ADA), which means you're entitled to reasonable accommodation from your employer. These kinds of accommodations may help you keep working. Making other lifestyle change that help manage your symptoms can also make it easier for you.

If your symptoms become too severe for you to continue working, you may qualify for Social Security Disability or Supplemental Security Income (for those with a shorter work history). Also talk to your employer about whether you're covered by long-term disability insurance and look into other disability benefits programs.

 

Diet and you: You are what you eat?

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While there's no single diet proven to relieve symptoms of fibromyalgia, lupus, or ME/CFS, patients do find that eating a healthy diet helps tremendously. It's also common for us to have food sensitivities that can worsen chronic illness symptoms and cause symptoms of their own.

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Multi-tasking problems and short-term memory can make cooking difficult. Added to this include pain, fatigue and low energy, and it can too often lead to less healthy convenience foods. Ironically many patients find ways to overcome these obstacles and stick to healthier eating habits.

 

Exercise: How silly is that?

 

When you live with debilitating fatigue and pain that become worse every time you exert yourself, it seems bizarre to suggest exercise, right? Well the important thing to know about exercise, is that it doesn't mean to spend long sweaty hours at the gym. You need to find a comfortable level of exercise for you. Remember even if you only do 2 minutes of stretching counts as exercising. The key is to be consistent about it and not over exert you. Over time, you may be able to increase the amount you're able to do. Remember keep it light and simple.

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Keep in mind when you first start out, even a few minutes of exercise can make you feel worse for a couple of days. That's because of a symptom called post –exertional malaise, which makes you unable to recover from exertion like most health people. Be sure to take it slowly and gently, and back off if what you're doing makes you crash.

Numerous studies show that proper levels of exercise can help alleviate symptoms and increase energy. Even though exercise is important for us, but be careful not to injure yourself. When your muscles are limber and toned, they tend to hurt less and be less prone to injury. Keep in mind that exercise is good for our general health, and not meant to create more health problems.

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SLEEP: It really does exist:

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One of the key features of fibromyalgia, lupus, and ME/CFS is un-refreshed sleep. Whether we sleep 12 hours a day or just a few hours at a time, patients just don't quite feel rested. Those of us who suffer from chronic illnesses are especially prone to multiple sleep disorders which make the quality sleep a rarity. The cruel irony is that the quality of sleep is one of the best remedies for these conditions. While we may not be able to solve all of our sleep issues, improving the amount and quality of our sleep is possible. Try some of these things to help you catch some zzzzzzz’s

 

• Romance yourself to sleep with candles, and soft music

• Change your linen on your bed to be soft and pleasurable

• Take a warm bubble bath with Epsom or special bath salts

• Have a peaceful and relaxing room, that brings you peace and joy

• Keep your room dusk or dark to help you relax and be at peace. 

 

Please note some of your sleep issues may need medical attention. If you have symptoms of sleep disorders, your doctor might suggest a sleep study to help determine exactly what's happening with you. Getting proper treatment can make a big difference in how well you sleep.

 

Coming To Terms With The New You! 

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Anyone who lives with a chronic, debilitating illness has been thrown for a loop. Coming to terms with your illness takes time, acceptance, and definitely patience. Coming to terms with health-imposed limitations and changes, and that can be hard. Dealing with chronic illness will make you feel afraid, insecure, hopeless, depressed, and bad about you.

Just as we need to learn pacing techniques and improve our diets, we need to develop good coping skills. This might mean changing your outlook on things, and a lot of people need help making that adjustment.

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Part of coping with your illness is reaching acceptance and dealing with the reality but it doesn’t mean giving in to your condition. The importance of improving your condition is essential, rather than fighting against it or waiting helplessly for a miracle cure to come along. Studies show acceptance is an important part of living with chronic illness and moving forward with your life.

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Just as seemingly little things in your daily life can exacerbate your symptoms, little changes to your daily life can help alleviate them. This could mean changing the way you dress or finding ways to keep yourself from getting too cold.

Remember no matter how bizarre or trivial your particular issues may seem, someone else with these conditions has dealt with symptoms as well. That's why it's important for butterflies to learn from each other and not give up!