7 Lessons in 7 Years of Being Sick

Choose to find value in your struggle and never surrender to your fibromyalgia.

7 Lessons in 7 Years of Being Sick

A week after my youngest son was born, I awoke to all-over body pain and the inability to walk or use my hands. That was nearly seven years ago and I have learned a lot about being sick, especially as I face daily challenges both physical and emotional.

Here are 7 lessons I have learned in 7 years of being sick.

1. This is your life — you don’t get to give up

This is my life and I will make best of what I have been given. On good days, I can manage my morning routine with little trouble, including taking medication, stretching and getting to work on time. Other days, I want to give up and let my illnesses walk all over me, but an inner voice whispers, “Don’t you dare.” I try not to respond with “It’s not getting better,” or “I just want to give up.”

Giving up is easy, and finding a reason to keep going is difficult. Find those reasons why you need to keep going.

Read more at http://www.fibromyalgiaconnect.com/fibromyalgia-articles/459-7-lessons-in-7-years-of-being-sick?category=lifestyle

7 Rules for Living Well With Chronic Illness

Living with a chronic illness doesn’t have to be hard

7 Rules for Living Well With Chronic Illness

A diagnosis of a chronic illness means you are sick and your illness is never going away. It is natural to feel a sense of injustice over the loss of something you thought you had control over. But living with chronic illness doesn’t have to be hard if we establish rules to make it easier.

Here are seven rules that have helped me to live well despite rheumatoid arthritis and fibromyalgia.

Rule 1: Trust Yourself to Find Answers

One of the most difficult things I dealt with in the ten plus years I was searching for answers was the possibility that all my symptoms were in my head. My being sick meant I had to trust in myself to find the right answers and not to let others deter me. There are going to be people along the way, including family, friends, and even members of the medical community, who will try to convince you that your symptoms are “all your head.” These people are ignorant and will never understand what your illness and symptoms are about. Don’t let their perceptions make you doubt yourself and your need for answers.

READ MORE.

Nine Ways to Cope with Fibromyalgia Brain Fog

Do you have fibro fog?

Nine Ways to Cope with Fibromyalgia Brain Fog

Are you forgetful? Do have trouble concentrating or speaking correctly? Do you often feel confused, fuzzy or detached? If so, you are likely experiencing a cognitive dysfunction that affects many with fibromyalgia. Referred to as fibro fog, cognitive issues can be frustrating to you and those around you.

They affect self-confidence and strain relationships. Fibro fog can also affect your ability to perform on the job and manage your daily life.

Most fibromyalgia patients experience some form of fibro fog. The symptoms of fibro fog are difficult and include being forgetful, feeling confused, being unable to concentrate, struggling with speech and even affect hand-eye movements. Each fibromyalgia sufferer will experience fibro fog differently and the fogs can come and go. Sometimes, you can have them with a fibro flare and other times, without.

READ MORE. 

Chronic Illness Tip: Change Expectations but Continue to Have Dreams

freedom

Self-esteem emerges from the very standards that you set for yourself. However, with a diagnosis of chronic illness, your standards have to change because if they don’t, you will be destined to fail. Often times, setting new standards for yourself can be quite tough especially if you were the kind of person who often took on more than most. If you were used to a 50 hour workweek, working out twice daily, and going to bed late, you are going to have accept that you can no longer do all of things. Finding new standards in both your personal and professional lives may involve delegating and even learning to say no.

From my own experience, I know that I not only had to change my own expectations but I also had to change the expectations of others towards me. Prior to my diagnoses, I had a lot happening in my life from my son’s school activities to helping out various friends and family. Chronic illness forced me to come to the realization that I had to learn to prioritize and my priority was my kids. Now, I spend more time at home with my kids, I don’t have as many visitors to my home as I once did, and I don’t jump at every opportunity to help. I have changed and so have my standards.

Prior to your diagnosis, you had ambitions that may have included a promotion or a higher educational degree, getting married, having kids, and/or saving the world. Whatever your dreams were, it feels like chronic illness has taken them away. However, that is not entirely true. Just because chronic illness has made some things difficult for you, it doesn’t mean you shouldn’t have goals and dreams and small or big, they are still possible. What may change, however, are the time to get there and the path that you take. Maybe chronic illness has taken away your opportunity to have children, so adopt, don’t dwell. Or if you have had to change careers because your health posed physical limitations, find a job that you can love just as much without the physical requirements. Your dreams are still possible but changes have to be made in order to get there.

Prior to my diagnosis, I had different goals and while I still have goals, they have become slightly altered since chronic illness came into my life. Five years ago, I had planned on attending law school but when I got sick, working full-time, spending time with my kids and attending law school no longer were possible. As a result, my plans changed, I earned a master’s degree in legal studies and continued on in my legal career. I also started to advocate, took on a more challenging legal position and decided if law school was in the works, it would happen much later in my life.

The belief that being chronically ill means your dreams are no longer possible isn’t true. Further, your dreams don’t have to change – the timing and the path does. Living with chronic illness means you start looking for a better quality of life and in turn, you will find that you can still continue to have dreams and goals.

How to Move Toward Acceptance of Chronic Illness

Accepting your circumstances doesn’t mean giving up

How to Move Toward Acceptance of Chronic Illness

When we accept something, we agree to experience a situation or follow through with a process — even if it’s negative or uncomfortable — without trying to alter it or walk away from it. Acceptance is one of the toughest things a person must do, but oftentimes it is the only option available. Whether we are trying to accept the loss of a loved one, a move to new city, a divorce, or that pain and sickness are a part of our lives, acceptance can be a difficult undertaking.

My Experience with Acceptance

I was diagnosed in 2008 with rheumatoid arthritis (RA) and fibromyalgia. My diagnoses felt like a death sentence and the information available on the Internet made me afraid that I would be disabled within a few years’ time. I knew that without accepting and acknowledging my situation now that I was sick, I could not have a full and productive life. Nevertheless, admitting that I was chronically ill was a difficult task because I feared that acceptance meant I was giving up.

I eventually did give into the idea of acceptance, but I didn’t give up. I decided to arm myself with factual information about how to best live alongside my diseases. Moreover, I found that my energy was better spent at seeking resources and support. With time, I understood that rheumatoid arthritis and fibromyalgia were the same as any other struggle I had faced in my life and because of my previous experience, this new endeavor would be easier to bear. Further, I chose to perceive my illnesses as simply another unique attribute of the person that I was. Ultimately, I acknowledged that while I could not control my circumstance, I had power over my response.

Accepting That You Are Chronically Ill

Accepting that you are chronically ill does not mean you give into your illness. It means that you are willing to take control of your life in the way it is now and you acknowledge that your life cannot be the way it was prior to being diagnosed. It means you are willing to seize the opportunity to see past your limitations rather than to dwell on them. Once you decide that you want your experience to be positive, acceptance becomes about choosing to be optimistic, taking the time to educate yourself and loved ones, seeking support and guidance, and not worrying about an unknown future.

Choose optimism. Coming to terms with being chronically ill requires recognizing the difference between a challenging life and one that is over. Chronic illness is long term, not terminal. Make a choice to be optimistic for yourself and for those who love you.

Educate yourself and others. Taking the time to educate yourself about your condition can help you to understand what limitations your disease may pose and what things you can do to have a productive life. Educating loved ones can resolve misunderstandings and ease coping difficulties for all parties. Talk about expectations and attitudes so that you can help loved ones to understand what living with chronic illness is like for you and how they can help.

Find support. Reach out to others dealing with similar diseases to yours. Ask them about their experiences and find out how they have been able to live successfully despite the constraints of chronic disease. Invite them to share their positive experiences and also their negative ones. Inquire about limitations they have overcome and be open to sharing your experiences and anxieties.

Don’t worry about the future. None of us can look into a crystal ball and have a guaranteed answer to what the future holds. Make the choice to look to the future with ambition, hope, and an upbeat attitude. Your disease may have its effects on your body, but it will never own your mind and spirit. You are free to live and dream in any way that you choose.

Choosing Acceptance Over Denial

Chronic illness is unpredictable and life-altering, but choosing acceptance over denial will keep you from compromising your need for treatment, therapy and rest. Focus your energy on finding ways to adapt to the moments when your disease wreaks havoc on your life. Make the choice to be flexible through the unpredictability and understand that you cannot will your life back to what it was before your diagnosis. Appreciate all the things you can control rather than the ones you cannot. Live your life one day at a time and do not to allow chronic illness to prevent you from embracing all life has to offer.

Originally posted at Fibromyalgia Connect.

 

How to Manage Chronic Illness in the Workplace

Communication with your boss and coworkers is vital

How to Manage Chronic Illness in the Workplace

The Centers for Disease Control and Prevention report that there are more than 133 million Americans living with at least one chronic illness. The U.S. National Library of Medicine defines a chronic illness is a condition that is long term, limits your activity and may require ongoing care. At least 80 percent of the workforce lives with chronic illness, according to the 2009 Almanac of Chronic Disease. Medical advances have allowed individuals with chronic diseases to enjoy productive lives and stay employed longer, possibly into retirement age.

Chronic Illnesses Pose Challenges In the Workplace

As chronically ill individuals continue to work, they will face more challenges than their healthier counterparts. People living with a chronic illness offer a unique problem for employers. This is because chronically ill employees generally have conditions that are unpredictable and, unlike a virus or injury, a chronic disease can be frequent and have invisible symptoms.

When employees disclose to their employers that they have a chronic illness — such as rheumatoid arthritis — questions can arise to whether they can continue to be productive employees. This is because the employee can awake to extreme fatigue, brain fog and pain in several joints. The challenges that this employee and his employer face include the employee feeling poorly, not getting work done or not being able to show up to work altogether. Further, the employee can find himself having to explain why he is feeling lousy, why he was not able to show up or arrive on time. For the employee, having these types of conversations with supervisors and coworkers can be difficult, as is explaining how a specific chronic illness affects a person. The employee does not want to feel unproductive or to be viewed as unable to perform the functions of the job.

Protecting Your Job When You Have a Chronic Illness

While employees cannot predict or control periods of disease activity, there is plenty they can do to protect their jobs. When it comes to disclosure of a chronic illness, it is necessary to look at whether a condition requires specific accommodations. This can include details such a frequent breaks, a modified work schedule for appointments, the need to come in later or even to take time off to manage and recover during periods of high disease activity. If an employee finds that accommodations are necessary, then he should talk to human resources about the options that are available to staying on the job and continuing to be a valuable employee. It is important to note that information shared with the employer about a worker’s health condition is strictly confidential.

Support from colleagues is vital for chronically ill employees to cope and to meet the requirements of their jobs. It is also helpful to educate supervisors and colleagues on how they can respond if an emergency arises, such as a possible seizure in an individual with epilepsy. People with chronic conditions should be aware that not everyone in their workplace is open to understanding their obstacles. Therefore, only share this information with coworkers you can depend on.

Becoming the Norm?

Chronic illnesses have become the norm in the today’s ever-changing workforce due to increased awareness that people with chronic diseases can be just as productive as their healthy colleagues. Moreover, work environments are more supportive and flexible than they have been in past to people living with chronic diseases. This favorable atmosphere has allowed chronically ill employees to feel appreciated and confident as they continue to work and look forward to future success.

Originally posted at Arthritis Connect.

Arthritis Tip: Keep a journal to help with pain management

Living with arthritis means you live with pain and it is often daily. Arthritis is degenerative which means it will get worse over time. Because it will get worse, learning to manage the pain and learning to cope are essential to your management of the disease. Further, it is important to take control and to learn how arthritis affects you. You can do this by chronicling your pain and symptoms in a journal and taking the necessary steps to manage changes and to take action in order to get control of your condition.

Be prepared to work with your doctor. To work with your doctor, it is important to be prepared on what things you want to discuss when you go in for an appointment. Most doctors only get about fifteen minutes with each patient so be prepared ahead of time. Your journal will help you to track you symptoms and allow you to better communicate and work your doctor. Write down when your experiencing pain and other symptoms – rate your pain on a scale of one to ten with ten being the worst. When you have symptoms, describe when they happen and what you are doing at the time. Try to be accurate about when pain starts and what things that pain prevents you from doing. At your doctor visit, share this information with your doctor.

Learning from your journal. In addition to providing you  a method of communicating with your doctor, the information in your journal will help you to make lifestyle changes that will allow you to control and mange pain. Track the pain medications you take so you know how to plan ahead of time. For example, if you get very sore after exercising, then take pain medication a half hour before your activity. Your journal will also tell you which activities cause you more pain and you can plan by changing to activities that are easier on your joints or by making the appropriate changes so pain and stiffness do not get in the way.

Daily Medication. If your arthritis is not responding to lifestyle changes and a non-medicinal approach, then you should discuss with your doctor whether prescription medications are better suited for you. Daily use of acetaminophen and anti-inflammatories may help relieve pain but can be a detriment to your health in the long term. Your journal can help you keep track of over the counter pain medications so that you and your doctor can determine whether a prescription medication is more suitable for you.

Possible Food Triggers. Certain foods may increase arthritis symptoms and pain for some people. These include foods such as red meat, alcohol, and tomatoes. While there is no scientific evidence that shows a correlation between certain foods and arthritis, many patients have reported a change in symptoms once they changed their diet. Your journal can help you to track the foods that cause you inflammation and additional symptoms so that you can minimize and eliminate those from your diet.

If your treatment plan is not working. Your symptom journal is important because it will help you and your doctor to see whether the changes you have made have made a difference. Most doctors want to see an improvement in six to eight weeks. However, if diet, lifestyle changes, and medication don’t help, your doctor may suggest physical therapy, injunctions, and/or weight loss. If all these options fail, your doctor may suggest joint replacement surgery.

What if your arthritis continues to get worse?  If you are having pain even when you are at rest, this is a red flag for you and your doctor. If you are less active than you were before, this is also an indicator that your arthritis is getting worse. If so, keep communicating with your doctor to make more treatment changes for better arthritis pain relief.

There will be times where you feel that your arthritis pain and symptoms are out control. Other times, you will feel like your pain is managed and you can be more active. That is why tracking your symptoms and pain is important. It will allow you an opportunity to understand what triggers pain, what works to minimize it, will allow you to enjoy your life, and even prevent future damage to joints.

Chronic Illness Tip: Plan Accordingly

Fatigue is perhaps one of the most debilitating symptoms for chronic illness sufferers. Your levels of fatigue can range from mild to severe. Some days, you will be able to resume your daily activities and other days, you will have a difficult time getting out of bed. Also, you will have days where you are energetic in the morning but extremely exhausted by the time afternoon rolls around. You can continue to participate in daily activities if you plan how to work these things when you are feeling better and this will also help you to avoid further fatigue and flare-ups.

• Lack of sleep is a major contributor to feeling fatigued. It is important to set a schedule where you go to bed at the same time every night and get up at the same time every morning. If sleep is still a problem for you, talk to you doctor about sleep aid to help you to get a good night’s sleep.

• Making use of lists, schedules and calendar can help you to remember things. Memory problems and other cognitive difficulties can be problematic and making use of time/date aids can prove helpful to you. You can also purchase planners and calendars that fit into your purse or use the calendar/planner on your cell phone. It is also important not to fit too many activities into one day because this can tire you out even more. Prepare a “to-do” list to keep you reminded of what you need to do each day but be realistic and mindful about how you can do and handle. Cross of items that are done so that you can see how much you have accomplished.

• Rest periods are also an important part of planning because they help you to feel less fatigued. When you are rested, you are better prepared to take on and enjoy activities and tasks.

• Organization is key to planning. When things are within reach, you are not doing unnecessary reaching and sorting through cluttered areas. It might take you some time to get organized but it will be worth it in the end.

• Taking care of your body and health also helps you to stay energized and to keep fatigue at bay. Drink plenty of water to avoid dehydration because dehydration causes fatigue. Eat well balanced meals because lack of proper nutrition will rob you of needed energy. Exercise to increase your endurance and energy levels.

• Alternate between sedentary activities and strenuous ones. Also don’t do two strenuous activities in one day. For example, if vacuum in the morning, pay bills and respond to phone calls in the afternoon. Do not scrub floors and do laundry in the same day.

Planning can help you to limit the amount of activities you take on daily. It will also help you to keep symptoms at bay because planning makes participating in activities more enjoyable and less stressful. The goal is that you act with consistency during both rest and activity by doing similar amounts of activity each day and taking similar amounts of time to rest. Planning accordingly will allow you to live within your planning, to achieve more, to have a more predictable life and to gain control over your illness.

 

Chronic Illness Tip: Pick your support system carefully

One of the things I find that applies to the majority of those of us living with chronic illness is that we have a tendency to feel alone in a world of healthy people. Our friends and our coworkers, and even our families, don’t necessarily understand what it is we are going through.

It is important to understand that isolation is detrimental to your health and it can be very easy to isolate yourself when you constantly feel sick and moody. Supportive friendships and relationships are central to your wellbeing when you suffer from a chronic illness. Finding supportive and nurturing friendships isn’t an easy task especially when you constantly feel sick and your mood is down. This is something that does not happen overnight but your determination alone will help you to develop friendships with people who understand the extent of your conditions and also share your common interests. It is something that is worth the effort.

What I have learned from my own personal journey with chronic illness is that people can really surprise you. Friends and people who you weren’t close with will actually be the ones to step up and the ones you thought you could count on won’t be there for you. These become the people that you can open up to about the extent of your condition. If they ask how you are doing, tell them the truth. If they are there for you when you need them the most, that says a great deal about their friendship. For those outside of that support system, when they ask how you are doing, lie, tell them your fine and simply change the subject. Too often those people don’t want or can’t handle the truth, so don’t waste your time and energy on them.

Last, if someone offers to help, accept their generosity. That is one of the most valuable lessons I have learned on my personal journey with chronic illness. First, it is okay to accept help and secondly, accepting help is a gift to the person giving it. At the same token, trust that one day you will be doing the giving.

Supportive friends can help you through some stressful and tough times whether you are experiencing a bad day at the office or going through a flare-up. Just remember, however, as you are working on supportive relationships that your goal is build friendships that reduce your stress level, not increase it.

How Relaxation Can Help Fibro Symptoms

As a fibromyalgia sufferer, you know how stressful of a condition it is. Pain and discomfort interfere with your daily activities and has a major effect on your quality of life. You’re forced to adjust your life to accommodate your symptoms and you are tired all the time.

All these things can negatively impact your professional and personal life, which in turn causes stress and anxiety for you. It becomes a vicious cycle because stress and anxiety make your fibromyalgia symptoms worse. When your body is mentally and physically stressed, this results in more physical discomfort.

It is important to learn to deal with and cope with daily stress and anxiety in proactive ways, and that involves finding ways to relax your emotions. There are things you can do to relieve daily stress and to prevent it from worsening your symptoms. Here are some examples:

  • Take a walk. You can do this alone, with a friend or with your dog. A walk outside will help to relieve stress and anxiety and the fresh air will make you feel clearer and allow to escape from whatever specific issue has brought about your stress and anxiety. Clearing your thoughts whether alone or with a friend can allow you to look at your situation in a different way.
  • Put on some music and sing and dance. This will allow you a temporary way to forget about your worries. Happy music and movement creates happy thoughts and the physical activity is good for me.
  • Listen to music that relaxes you. This will dispel your stress and anxiety because your heartbeat will conform to the relaxing music so try something slow tempo.
  • Smile and laugh out loud. Psychology research shows that even if someone is in a bad mood, smiling and laughing gives way to a more positive attitude. Even a forced smile can turn into a natural one, a better mood and less stress.
  • Enjoy a warm beverage like tea or coffee. Warm liquids always soothe the mind. Stay away from alcohol and caffeine because they make stress worse.
  • Volunteer. As we all know, helping others makes us feel better about ourselves. Besides, your own problems may seem small compared to those of others.
  • Make “No” a part of your vocabulary. Allowing yourself to become overcommitted is stressful in itself and you don’t need any more stress and anxiety in your life. It is also important to make time for yourself.
  • Get moving. Exercise, yoga or any other aerobic activity allows you to control your breathing and relax your mind and your muscles. Endorphins from aerobic activity will allow you to feel more energized thereby reducing your stress levels.
  • Talking to a friend or even to God, if you are religious. A friend might help you to resolve some of the anxieties you are feeling or offer some experience. Talking and/or praying to God will help to get some pressing issues off your mind that you would not otherwise share with anyone in your life.

As a fibromyalgia sufferer, it is important to manage the daily stress that comes with the condition. It is important for you to take control now rather than later because uncontrolled stress influences every aspect of your well-being and adds a negative toll to your health.

What things do you do to help yourself deal with daily stress and anxiety?