Working with the many issues and challenges around a diagnosis of Multiple Sclerosis, a CHRONIC ILLNESS, which I view in the category of TRAUMA, I provide understanding, tools towards greater self-awareness, verbal exploration, guidance, support and empathy around the feelings and reactions in response to:
Being diagnosed,
Living with such a diagnosis,
Issues related to relationship and workplace concerns and stressors,
Particular emphasis on helping those diagnosed live with a disease that is largely characterized by its uncertainty and unpredictability.
Emphasizing SELF-UNDERSTANDING, MINDFULNESS and STRESS-REDUCTION COPING STRATEGIES around one's disease and helping one to recognize how self-awareness about how one's MS affects an individual can actually empower that person to be more involved in making proactive decisions on his/her own behalf.
I am honored with the designation of being an MS Partner in Care through the National MS Society. Partners include health care professionals in the areas of neurology, mental health and rehabilitation, as well as sites that provide multi-disciplinary health care. Partners demonstrate knowledge, expertise and experience in MS care, and have a special interest in treating people living with multiple sclerosis.
I additionally hold the credential of Multiple Sclerosis Care Specialist through the Consortium of Multiple Sclerosis Comprehensive Care Centers. The credential is a reflection of both my experience and knowledge-base expertise in working with the MS community and population.
Previously a Program Consultant for Can Do Multiple Sclerosis, an organization that runs 1-5 day programs for MS Patients and their respective Support Partners with the overall mission to EMPOWER all participants. I also recommend continuing to learn as much as you can about communication and the emotional issues inherent with MS – for people living with the condition and support partners. Can Do MS has some wonderful resources, including:
Webinars
The Physical and Emotional Aspects of Intimacy in MS
Library Articles
The Physical and Emotional Aspects of Intimacy in MS
Communication is a Two-Way Street
“I am so frustrated. I have lows almost every day that knock me out and require me to lay in bed without any energy. Then, without explanation, I get up and feel well. What can I do to manage these mood/energy swings?”
Answer by Gayle Lewis, Ph.D. – Psychologist and Can Do MS Programs Consultant:
I'm very sorry to hear of your challenges. What you're describing seems to speak both to the depression and fatigue that often accompany MS, as well as the unpredictability of the disease. Having a chronic, unpredictable disease in itself can be very upsetting and overwhelming. Adding low energy, mood shifts, and uncertainty to the equation can understandably create frustration.
First, remind yourself that mood swings are a normal and quite prevalent symptom of MS. Hopefully, understanding that these issues are biological associations to your MS will make you feel less frustrated. Because these mood swings are caused by reactions in your body, they can be treated. YOU CAN BE IN CONTROL OF YOUR MOOD AND FEELINGS, rather than your MS controlling them. Speak to your physician about possible treatment options, including antidepressants or mood stabilizers (depending on what seems more appropriate). Here are some other tips that may help:
Meditation is a very regulating, calming and energizing activity that, again, YOU are in control of vs. feeling controlled by your MS.
Acupuncture has been shown to be helpful in dealing with emotional and physical fatigue.
Speaking to a therapist regularly can be very useful in managing your feelings about your MS and offer ideas how to deal with the disease in ways that are useful to you.
Add things to your life that allow you to feel empowered...this alone can have a wonderful capacity to bring you energy and strength.
Secondly, I would highly recommend you implement energy management strategies. It's very difficult to suggest that one conserve energy at times when you actually HAVE energy....but that's very important to do. Ideally, you'd like to motivate your system to be more in balance...and for YOU to be in charge, rather than your MS ruling your feelings. This might mean incorporating tools into your life that make doing chores easier and less time-consuming, getting help from others, and spreading your tasks out throughout the day. An Occupational Therapist can provide ideas about making tasks less energy-evoking.
Finally, it is important to be aware of your changing feelings, moods, and energy levels. Can Do MS recommends keeping a journal and sharing this with your healthcare team. People with MS and support partners are significantly at risk for depression, mood swings, and anxiety. These symptoms have been noticed as a major feature of MS for over 100 years, but are often overlooked by healthcare professionals. You have to be your best advocate and educate yourself. Can Do MS is a great place to start. They have some wonderful articles and webinars on managing depression and fatigue. The National MS Society also has an extensive library devoted to emotional changes and mood changes. I hope these ideas of of help to you.
There are also many resources to understand and cope with the unique and very real impact that MS can have on a relationship. In addition to Roz's book, "MS: A Guide for Families," take a look at the following resources:
"Relationships & Communication" Can Do MS Article
"Relationships and Building Satisfying Partnerships" Can Do MS Webinar
"Multiple Sclerosis and Divorce" MS Connection