YOUR STARTING POINT

To find your path, you must first determine your starting point. Whether MS has been a part of your life for a long time or it is new to your life, take time now think about how you are doing with MS in the picture and where you are with your overall health.  Are you happy with how the MS and the symptoms are being managed?  Are you as healthy as you could be?  There are a series of questions below to guide you in learning more about your current level health and wellness along with management of MS.  For some people, you may have answers to the questions and already know where you are with MS management and overall health.  You may even have a good idea about the direction you wish to move in.   

For others, it may require that you take some time to observe, investigate by answering the questions and determine your starting point.  Either way, the goal is to increase your awareness and focus on your health and your management of MS.  Over the next few weeks, be aware of your body, your MS and symptoms and your lifestyle.  Observe how you feel on a day-to-day basis.  Now is a perfect time to start a journal to keep track of information and observations. By taking time now to determine your starting point, you can then identify the direction and path that will move you towards higher levels of success with MS as part of your life.

Questions to consider for medical management: Have you found an MS Specialist to work with to manage your MS and your symptoms?  What do you understand about MS?  What type of MS have you been diagnosed with?  Do you understand the different types of MS?  What does your MRI look like?  How do the medicines you are taking work to control the MS and/or control symptoms you experience?  Are there any side effects of the medicines that you should be watchful for?  Is there any follow up needed to monitor medication effects or side effects on a routine basis?  What are the symptoms you are experiencing due to the MS?  What makes these symptoms better or worse?   

Some of these questions may require you meeting with your MS Specialist to learn more about your particular MS.  It helps to be curious and watchful of your daily experiences, especially with MS in the picture. For example, if you notice changes in your symptoms during the day or week, make a note of them.  Include observations of routine or new activities you engage in as well.  Notice if there is any impact on your symptoms or general health.  For example, some people with MS experience more symptoms when they are in hotter weather or enter a hot tub.  Some people experience an increase in their level of fatigue during different times of the day and require a nap or rest period.  These observations are important to be aware of as you strive for success in managing your life with MS in the picture.

Questions for your general health and wellness: What is your overall health right now?  Do you have other illnesses and are they being managed as well?  What do you normally eat on a regular basis? How much and what type of physical activity do you participate in daily or weekly?  How are you sleeping?  What are the stressors you must deal with and how are you dealing with them? What are your attitudes and beliefs about MS and about your life and health in general?  Do you engage in behaviors that may have a negative impact on health such as smoking, high alcohol intake, drug use, addictions of any kind, etc.? 

The above questions are designed to guide you to finding your individual starting point. Take a little time each day to reflect and document where you are on the questions for the next few weeks.  Although sometimes it’s hard to do, try to avoid making judgments about any of your current health behaviors and just observe your daily life with MS and your overall health practices.

Health, wellness and illness are on a continuum.  Think of your health and wellness level as being on a scale as in the picture.  The lower end represents VERY LOW health and in some cases extreme illness (death coming soon). The higher end represents EXCELLENT health as we often see with people competing in the Olympics. Some people find it easier to add numbers to the scale (1 for the low end and 100 for the high end). Most of us fall somewhere in-between the extremes.  Where do you see yourself today?  This can be used to offer you a starting point for overall health and wellness. Your health care provider can also assist you in identifying your starting point and guide you to setting goals to improve your health and wellness.

Now you can look at what is working well for you (areas of strength) and what is not working so well (areas to improve on).  Everyone is at a different level with MS, with symptom management and with individual levels of overall health or wellness. Ask yourself this question:  What can I begin right away that will move me to a healthier state on the wellness scale?  Work with your MS Specialist or primary care provider to determine where your efforts will be best placed.  It is important to be realistic and set small, achievable goals. As they say slow and steady wins the race and this is especially true in MS and symptom management. Consider using The 50/50 Approach with these activities to include both medical management of MS (50%) along with general lifestyle and health management strategies (50%).

STEP 1 – MEDICAL MANAGEMENT

So now you have put in the hard work and found your starting point. Congratulations!  Now it is time to take the next step and begin moving toward higher levels of success in managing your life and health with MS in the picture. To accomplish the first step, it is important work with an MS Specialist to guide your medical care.  As you may already know, MS is a complex disease and requires complex medical management.  Looking at the questions you addressed above regarding your understanding of MS, your diagnosis and symptoms, etc., do you have any that are still unanswered?  Talk with your MS Specialist if needed to address these unanswered questions and strengthen your knowledge base. 

Learn all you can about  MS, associated symptoms, and what the plan is for medical management of your MS. If you are not on an approved MS medication, talk with your provider to see if medication would benefit you and consider getting started right away. If you are on an MS medication, make sure you are taking it as prescribed and are being monitored frequently by your MS Specialist.  Most MS Specialists recommend being evaluated every 3 months to 1 year based on the stability of the MS and your overall responses to medications and management of symptoms.

Your MS Specialist is your main partner and can help guide you to success along your MS path.  Work with him/her to set goals for managing your MS and symptoms.  Remember to observe and take notes on how your body responds to the medications you are taking, especially if changes are made to the medications for any reason. You can use the journal you started earlier when you found your starting point and add information as you go. It is important to track your responses to treatments and to be aware of how you are responding to changes in treatments, activities, etc. Sometimes people have to try several medications before achieving the desired results and achieve goals in managing MS and symptoms. Your MS Specialist will guide you but you must be able to discuss your experiences with and responses to the medications.

With MS, some symptoms may require specialized care from other experts. You may be doing well with your medical care and taking your medicine, but your MS symptoms are still not well controlled.  Start by picking one or two symptoms to focus on improving. For example, if bladder control issues are a big problem for you, your MS Specialist might make a referral to a urology specialist who understands MS. This specialist can do testing to determine the exact cause of the bladder difficulties and make recommendations for specific treatments. There are other referrals your MS specialist may consider based on your particular symptoms.  The key is talking with your provider and letting them know what you are experiencing.  With MS symptoms, it may be embarrassing or scary at times, but at the end of the day, your provider can guide you to achieve the highest level of control possible with MS and symptoms. By opening up to them about your symptoms and any difficulties you are having, you allow them to partner with you and help you reach the success you desire.  Once the specialist knows about the symptoms you are experiencing, they can help you in ways you may not even know about. The relationship with your MS Specialist is a true partnership and they have a sincere desire to provide you with the best medical care possible.

STEP 2 – LIFESTYLE MANAGEMENT

The focus areas for guiding your path to step 2 will also be different for each person.  From your previous tracking, observations and identified starting point for your current level of health, determine what lifestyle behaviors are strengths for you and what areas may need to be strengthened.  The key areas to evaluate and focus on here are nutrition, physical activity, stress management and sleep patterns to get started. This step includes finding your needed areas of improvement, setting specific achievable goals and developing plans to reach them.  Your MS Specialist and Primary Care Physician can be great partners in guiding you to set up your path to success in managing your overall health and wellness in Step 2.  Your goal is to have a healthy body, mind and spirit to support the medical management of your MS.

Identify the areas that are causing the most concern or distress in your life to improve first.  For instance, let’s say that you are physically active but your nutrition and sleep patterns are off balance and need improvement.  Then focus your attention on improving nutrition and sleep habits.  When you are not getting adequate sleep, this can impact other symptoms such as fatigue, moodiness, depression, and a host of other MS symptoms. Lack of adequate sleep can also have a negative impact on your overall quality of life.  Once sleep patterns are improved, other symptoms can also improve as a result. 

A second example: If you are having major challenges with bladder or bowel control, your nutrition may be part of the issue. In addition, you may not be drinking enough fluids daily or want to go out with friends or family for fear of having an accident. This sometimes lessens your physical activity level. When all of these things are combined, there is a negative impact on your physical health, your activity level and your quality of life in addition to the basic elimination problems. As you make improvements to gain more control over bladder or bowel issues, you also experience positive changes in your health, your level of activity and your enjoyment of life. Your MS Specialist can work with you to identify combinations of medication and lifestyle changes that can improve these and most other symptoms of MS.

Many studies suggest that there is a higher than average number of people with MS who suffer from depression or anxiety.  This often leads to people dropping out of social activities and can impact other symptoms along with your overall quality of life.  If you experience depression and / or anxiety, it is important to talk with your MS Specialist and consider treatment options.  When treatment for depression and/or anxiety is successful, sometimes other symptoms improve as well. 

The message here is that there are relationships between many of the symptoms of MS and also may be related to your lifestyle practices.  With changes in nutrition, sleep patterns, physical activity levels, etc., you often have the added benefit of improved symptom management. In some cases as one symptom improves, others can improve as well.  In addition, some MS symptoms impact your overall quality and enjoyment of life.  As you gain a higher level of control over symptoms often times this will improve your quality of life, your happiness and your health.

It is important to set goals as you identify changes you want to see in your life.  Start small and expand to new goals as you achieve success along the way.  As you experience success in reaching your goals, you will gain momentum.  By incorporating changes into your life slowly, step-by-step, you are more likely to make these changes part of your life for the long term.  Think for a moment, how many New Year’s resolutions have you jumped into quickly only to run out of steam and bail on the goal before you reach it?  Take time to make changes you can bring into your life that will last.

STEP 3

Your attitude, approach to life with MS and stress management are critical pieces of achieving success on your MS path.  If your belief is that MS was given to you as a punishment or as a hardship you will have a different approach to managing MS than someone who sees the diagnosis as just another part of the life experience to be dealt with. Unfortunately, our bodies are vulnerable to diseases. That is just a fact of life.   Reflect on your thoughts and beliefs about the illness experience and what it means to you and your family. Begin to challenge any negative thoughts and replace them with more positive, and realistic ones.  Seek professional assistance with this if necessary. Talking with a professional counselor can be beneficial especially when trying to cope with the changes and challenges that often come with MS.

People who have an attitude or belief system that “there is nothing I can do” may allow the MS to take control of their lives and can struggle a great deal.  On the other hand, people who take charge of their health and the MS through medical management and lifestyle choices increase the opportunities to work toward higher levels of success in managing their health and the MS symptoms. There are absolutely things you can do to support your health and wellness, to improve control of your MS and your symptoms and to bring higher levels of joy to life.

Chronic stress has been shown to have a negative impact on overall health and on MS.  Everyone lives with daily stressors that come with work, family, daily responsibilities, etc.  Then there are times you may experience extremes with stressful events such as with the loss of a loved one or other major life events.  Even having a flat tire can throw off your plans for the day depending on where, when and how it occurs.  Part of your path is to determine how you handle stress and if it is helping or hurting your efforts to achieve a higher level of wellness. Eliminating stress from life is unrealistic while minimizing the impact of stress is often doable. Many of the following activities have been shown to reduce stress levels: yoga, meditation, deep breathing and relaxation, aromatherapy, sex, exercise and physical activity, body massage, journaling, taking a walk in nature, pet therapy and many more.   As an added bonus, many of these activities also have a positive impact on symptoms such as sleep, depression, spasticity, and especially fatigue.

Remember, it is not perfection we are seeking in building strong healthy bodies and managing MS; it is continuous progress along your path that leads to higher levels of success. 

When lost in the wilderness, a compass will guide you, but you must make the effort to find your direction and move towards it.  With MS, it is not uncommon for people to experience an increase in anxiety and fear that comes with this diagnosis and the potential or actual changes it brings to every aspect of life.  Sometimes people express feelings of fear related to  ‘what will happen next’?  Anyone who has experienced an attack of MS can most likely identify with the fear that comes with questions such as: Will I recover from this attack?  Will there be permanent damage and what symptoms will I be left with?  What if it happens again?  Can I do anything to prevent the attacks? 

Our goal at Your MS Compass is to help guide you out of the wilderness and move toward your goals to achieve success with MS!

Your MS Compass will offer articles expanding on the topics of nutrition, stress management, physical activity and MS symptoms in the coming months. Begin today to take steps to Find Your Path to Success, track your progress as you go and celebrate each and every success that comes your way.