Thursday, July 27, 2017 12:00 pm – 1:00 pm EST This discussion is archived.

Amy Wood is a psychotherapist, professional life coach and mediator, motivational speaker, and author of the book Life Your Way. Over the last 20 years, she has helped hundreds of people channel their unique strengths into improving their lives. She says, "Genuine fulfillment is about stepping away from the cacophony of too much expert information, pulling out only that which resonates to create your own unique road map to success, and leaving the irrelevant rest behind." Dr. Wood practices in Portland, Maine and has a close relative who lives with myositis. Please join me in welcoming Dr. Wood to TMA's live discussion.

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TMA:

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Thank you for that very nice introduction, and welcome everyone.

  • Staying Motivated Through Hopelessness

    Participant:

    When it seems like every few days you find yet another thing that you can't do, it's very depressing, especially with IBM, where there's no hope of any of this getting any better. Any suggestions on how to stay motivated and engaged when you feel like it's all hopeless?

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    Constant loss and decline is very hard to deal with. My primary suggestion is that you recognize that your emotions around all this are normal, and the best way to deal with those emotions is to see a psychotherapist regularly to process and vent. Aside from that, it’s important to take the best care of yourself possible, and find joy and comfort wherever you can. Be sure to read, watch, and listen to things that are uplifting, spend time only with positive people who support and understand you, be as mobile as you can be, spend time outdoors, get sufficient sleep, find ways to occupy your time that are consistent with your interests/physical ability. All of these suggestions can help you to feel motivated and engaged. That said, there will be times when you still will feel hopeless and, again, that is normal considering your circumstances. It is healthier to embrace your emotions than to fight them, so making room for all emotions – not just the enjoyable ones – is key.

  • Professional Help

    Participant:

    How can someone tell if they need to seek professional help whey they feel angry, sad, anxious, and helpless all the time?

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    Anyone who feels angry, sad, anxious and helpless all the time should engage in psychotherapy. You know professional help is needed when emotional distress begins to interfere with your life and work. It is better to seek professional help when you first notice emotional distress; don’t wait until that distress escalates into a crisis.

  • Sleep

    Participant:

    We know how important sleep is when coping with chronic illness and the stress it brings. I have been unable to "behave" my way to sleep while on prednisone. I have not been successful in building up a sleep drive with exercise due to some immobility from a recent leg injury. Diet, mindfulness, meditation, limited exercise, typical "sleep hygiene" (avoidance of media stimulation, regular hours, bedroom restrictions...), soothing music, background white noise, hypnotic CD's, antihistamines, melatonin, tryptophan, various teas, and other "natural" remedies have not worked. Now I'm stressed about not sleeping. Thank you for your suggestions.

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    Sounds like you are doing all the right things to sleep well. My suggestion is that you let your medical doctor know that nothing is working, and he or she should be able to offer an appropriate medication or mix of medications.

  • 3 Chronic Illnesses

    Participant:

    Some or probably many of us have more than one chronic illnesses. I have three. How do you explain this to friends and family members without causing them undo stress?

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    The best explanation you can give is that you are managing your health as best you can, and what is most helpful is for your family and friends to trust you on that. You can reassure them that you will reach out for their help if you need it.

  • Type A Personality

    Participant:

    Dr. Wood, Is there any study showing that DM and the flare of DM is triggered by stress? Is there any correlation between DM and a so call Type A personality?

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    I don’t know of any studies on the impact of stress/Type A personality on myositis specifically. What I do know is that many studies show that high levels of stress/Type A behavior can contribute to chronic illness. That said, myositis can strike people who are not under chronic stress and don’t have type A personalities.

  • Anxious, Depressed and Overwhelmed

    Participant:

    Sometimes I feel anxious and depressed and overwhelmed. Are there natural ways to overcome these feelings without taking yet another drug?

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    There are many ways to reduce anxiety and depression: regular exercise (if your doctor says exercise is a good idea in light of your condition); emotional processing through psychotherapy, journaling, doing art; eating healthfully; spending time with your most positive family and friends; listening to upbeat music; avoiding exposure to upsetting TV; limiting time on the internet; enjoying the outdoors. Sometimes these natural remedies alone can work, but sometimes the issue is biological and medication is necessary. Studies show that the best way to reduce anxiety/depression is through a combination of therapy and medication.

  • Frustration from Itching

    Participant:

    I have dermatomyositis. I have been able to deal with the muscle weakness, but the itching from this disease has caused anger and frustration. These flare-ups make me want to pamper myself with comfort food. My "ompulsive overeating tendencies" are often too strong to resist. I have taken many "mindful eating" classes, and know that I need to treat my body with respect, but the intensity of the itch has led to bleeding skin, overweight, high cholesterol, and near type two diabetes. I hope that your words of wisdom can lead me down a different path while I strive to get this itching under control. Thank you.

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    The best way to avoid unhealthful eating is to rely on positive distractions – your favorite book, movie or internet game, for example – when you feel the urge to eat too much. Also, get all unhealthful food out of the house so it’s harder to get. Make it your goal to eat healthfully most of the time and allow yourself to give in to cravings every now and then so that the cravings don’t build up into full-on rebellion.

  • Mobility Challenges

    Participant:

    How do you handle stress caused by mobility challenges (stairs, walking, lifting, fatigue) and manage the expectation to participate in functions like everyone else, since on the outside you look healthy to friends and family.

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    Top handle mobility challenges, make sure you are always one step ahead so that you always have what you need for support. For example, get a cane/walker/wheel chair before you need it, so that you don’t end up without the appropriate equipment when you get to that stage. And always be safe and make sure you’re not pushing yourself beyond your capacity. The best way to deal with expectations from family regarding mobility/energy is to be honest and up front. Tell them that even though you don’t look sick, you have an “invisible disease” that restricts your mobility and saps your energy. Tell them in advance that sometimes you may say no to an invitation that may be too stressful for you, or you may excuse yourself from an event if you get too tired to carry on, and they shouldn’t take that personally. Reassure them that you are doing your very best to cope with myositis and be clear with them about what does and doesn’t help.

  • Juggle Lack of Energy, Work and Exercise

    Participant:

    How do we juggle the lack of energy, work, and exercise with PM?

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    To juggle lack of energy, work, and exercise, it’s essential to ask yourself every day and throughout the day how much energy you have and what’s possible to do without over-exerting yourself. Make sure you conserve your precious energy by not participating in activities that you know are just too much. If you are discerning about how you use your energy, committing only to what is most important/meaningful, you will have more stamina.

  • Masking Fatigue

    Participant:

    How can I mask my fatigue when I'm out running errands? I try to do short runs every other day, but I tire so easily and I'm sick of people asking me if I'm okay. I know they mean well, but I just don't want to "look sick."

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    When people ask you how you are, don’t give them a stock answer (ie. Great, how are you? or Crazy busy, how are you?) Instead, think every day of something you’re happy about, and respond with that. For example, if someone asks how you are or comments that you look tired, answer with something like, “I’m doing well, because I got to play with my dog this morning/I saw a great movie last night/I’m really enjoying the weather today.” Find something to be positive about every day, and communicate that to others, and that will help everyone to feel better.

  • Impact of Stress on the Body

    Participant:

    What impact does stress and emotional health have on our bodies? Is that different for someone with chronic disease? Why is it so important to manage stress and emotional turmoil?

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    Yes, stress and emotional issues impact our bodies in big ways. The more stress you are under and the more unhealthy you are emotionally, the more likely you are to have physical health issues. And yes, people with chronic illness are more vulnerable to the physical symptoms of stress. This is why it’s so important for myositis patients to reduce stress as much as possible and channel time and energy into extreme self-care.

  • Unemployment

    Participant:

    What can I do about the stress that comes with unemployment? I was forced to quit my full-time job because of my disease. How do you manage that?

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    The toughest parts of unemployment are loss of purpose and structure and social contact. The best thing you can do to feel better when you are unemployed is to create new routines for yourself that keep you focused, positive, and moving forward. Think of activities that contribute to your well-being and self-esteem, and do them regularly. Make sure you connect with positive people, especially people who are in your position, so that you can support each other. Reaching out to fellow myositis patients through TMA is a good place to start.

  • Top 5 Stress Reducers

    Participant:

    Managing stress can be very difficult when trying to manage daily with the different challenges of dealing with polymyositis. What are the top 5 stress reducers that would help throughout the day to live a more calming and relaxed life managing polymyositis?

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    Great question. Here are my top five stress reducers for everyone, not just people with myositis: 1. Create a morning routine that lets you ease into your day – no rushing, 2. Spend time only with positive people who support you. 3. Say no to what doesn’t resonate with you. 4. Do something you enjoy every day – even for just a moment. 5. List three things at the end of every day that went well, and ease into sleep with a relaxing evening routine (no technology an hour before bed!)

TMA:

Thank you Amy Wood for taking time out of your busy schedule to answer TMA member questions. This concludes today's discussion. Thank you to all the members who participated.

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Thanks for having me.