Lifestyle and Self Care:
Disclaimer:
Information or materials on this website are not intended to treat or replace your doctor’s advice nor do we endorse any particular product, technique, or idea. It is highly recommended that patients contact their hematologists or health care provider for adequate care and treatment.
© Copyright 2016 Storma Sire
Self Care 101
"Treating yourself like a precious object will make you strong." - Julia Cameron.
The trick with Sickle Cell is being able to take excellent care of ourselves. Sometimes this can be difficult, so overcoming these difficulties can make us strong. The better we look after ourselves the better our chances are. Taking good care of ourselves does not mean we will never suffer or hurt again, but it does mean we have tools to overcome the challenges we face.
Here are some suggestions:
- Regular doctor check-ups. Early detection of problems are key. Build a team of medical and health professionals (doctors, nurses, physiotherapists, psychologists / psychiatrists, massage therapists, chiropractors, cranial sacral therapists, acupuncturists, etc) that you like and that you can communicate with comfortably. Try to create open conversation between this team of professionals if possible. This may take some time, but it is worth it in the end.
- Look after the body in every way you can (fitness / exercise, diet / nutrition, regular doctor visits, skin care, massage, etc). See articles below for more ideas. Looking after the body is the most vital step in your self care program.
- Lower stress (see article on stress below for ideas).
- Seek positive social support from family, friends, lovers / relationships, counselors, elders, mentors, advisers, spiritual advisers, support groups, clubs, etc. Take a hard look at the people around you. Do they stress you out, bring you down, let you down and are unreliable, make you feel bad about yourself, fill you with a sense of dread and foreboding, are they always negative, are they narcissistic and self absorbed, are they always creating drama? While you are healing it is probably a good idea to limit contact with these people or situations as much as possible. Sometimes these people are our caregivers or people live with and rely on for help, so we need to get creative about how to limit or deflect exposure from these people anyway we can for as long as we can. Sometimes sending these people out on an errand or two or three can give us some space, or sometimes staying in our room and listening to music for a while can limit exposure as well. And learn to communicate to these people that we need things to be calm, peaceful, and positive especially when we are trying to heal. Get creative and find ways to protect your psyche (soul) and what little energy you have as much as possible.
- Get involved: volunteer, join support groups, group activities like art, writing, book clubs, financial clubs, etc. But don't forget to pace yourself. The idea is to add enjoyment to your life, not more stress, so beware committing to too many projects at once. At the same time, those with chronic illness can tend to go too far over to the other extreme and isolate ourselves too much. The trick is to find a balance of having an active and empowering social life and having time for quiet, silence, and deep inner reflection. Both are equally important.
- Learn to enjoy your own company. Sometime when we are sick we feel isolated. Find things you enjoy doing that you can do alone: art, crafts, writing / journaling, music, cooking, dancing/movement/yoga/stretching, singing, movies, gardening, meditation or prayer, positive visualization and affirmations, a hot bath, an audio book series or lecture while in the bath or doing something creative. Fill your mind with something positive, empowering, engaging and nourishing. Try to avoid watching junk TV - instead rent a movie you enjoy or an audio book or lecture. Avoid overly violent material as well if you can help it during your convalescents / time of healing. Negative imagery in the mind before bed has been known to affect our dreams and our healing.
- Do the things you love. Enjoy the things you hold in your affections. Make a list of the things you love to do and find ways to enjoy those things with the money you have today. Look around your house and identify the things you own that love in order to cultivate a sense of abundance in you life (ie. books, pens, cooking, sewing, sports, art, writing, filmmaking, quilting, gardening, etc.)
- Look after your financial health (see article below).
de-Stress dis-Ease
Stress is the universal enemy of healing no matter what we are suffering from. We must learn to manage stress properly.
Here are some suggestions:
- Breathe. Our cells need oxygen. Slow down and remember to breathe. A great breathing exercise is the 4 - 7 - 8 breath or the Relaxing Breath. Breathe in for a count of 4, hold for a count of 7, exhale for a count of 8. Try to do 4 - 8 cycles of this breath everyday and watch how you start feel.
- Another factor in stress is our lifestyle. Make a list of areas of your life that stress you out or drain your energy (people, places, circumstances, noise, financial, romantic, medical, spiritual, emotional, etc), and see what can be done about it. Stress will always be a part of our lives, but it is the lack of recovery that does the damage (see http://www.youtube.com/watch?v=5-RVECUWOGQ) for more ideas.
- Laugh. More and more I keep hearing about laughter therapy. I began to investigate this more and discovered that when I was feeling awful watching a funny movie or talking with a friend that can make me laugh was wonderful medicine.
- Spa therapy. Whether you're a man or a woman there is nothing like a hot bath to ease the pains of daily living. Try using baking soda, Epsom salts, sea salt, or essential oils to add to the relaxation. Using candles and listening to calming music, empowering lectures or audio books can be a great addition too to your home spa as well. Research / look into dry skin brushing, lymphatic drainage (see exercises http://www.youtube.com/watch?v=QA-wi0d7-Ro) , self massage, reflexology or acupressure. These can be great ways to pass the time away in a hot bath. Print up some reflexology, lymphatic drainage, self-massage, reflexology or acupressure poster instructions and have them laminated and place them in the bathroom for whenever you need them. Be sure to ease into a hot bath to avoid triggering a Sickle Cell crisis / attack. Sometimes extreme temperature changes can trigger a crisis, so be sure to take your time and warm up in a shower first before sinking into a hot bath.
Fitness / Exercise
Exercise is one of the most powerful ways we can change our physiology. It lowers stress, it makes us strong and powerful, it gives us more stamina and endurance, it gives us flexibility and durability, it helps us sleep better, it lifts depression, it gives us confidence and self-esteem, it helps us look and feel good, and yet... it is usually the last thing on our list of things to do. When we are in pain exercise is the last thing we think about and by no means do I recommend exercising when we are in the middle of having a Sickling crisis / attack. But when we are feel better and we are out of danger, then exercise can be a great ally to us. I does not have to be overly vigorous (especially when we are recovering), but it should be a regular ritual we practice and enjoy. It is important to choose forms of exercise that you enjoy, that are not too taxing on the body, can be modified for when we are recovering or not feeling very well, and can be done indoors as well as outdoors.
Here are some suggestions:
- Walking. Walking is the number one, universal exercise that can be done at any age, size or shape. It is free. It requires no props, except good walking shoes. It can be as gentle or aerobic as you like. It is gentle. It is easy and it can be done anywhere with anyone.
- Ecstatic dance and other forms of dance. Ecstatic dance allows the body to do what it wants to do without any restrictions, limitations, or competitiveness. It is a form of movement that anyone at any age or shape or size can do. The body will move in different ways depending on what is going on that day with your body.
- Yoga / Yoga, African yoga / Afrikan yoga water movement / Movement of Tefnut, Journey of Ra yoga form / Kemetic yoga / Kemetic Maat yoga / Egyptian yoga / Sun Salutation, Traditional Sun Salutation Advanced, Moon Salutation yoga form, Ashtanga yoga, Vinyasa Flow yoga, Yoga Trance, Iyengar yoga, Acro yoga, yin yoga, restorative yoga, and yogas for various pain relief. There are countless forms of yoga each with their own style, fitness level, form, focus, and philosophy - and it is always evolving. A yoga is a posture or series of postures; a form of moving meditation. Restorative yoga is a great way to start out learning about yoga and what your body can and cannot do. It is an extremely gentle form of yoga that people with aches, pains, injuries, illnesses and disabilities can do without hurting themselves. Yin yoga is great for those that just want a simple stretching yoga that is very slow and gentle and that will increase flexibility over time. BKS Iyengar yoga is great for those that wish to hold stretches longer with the use of props. Ashtanga yoga is a yoga practice that links the breath with the body in a more conscious way using as series of flowing stretching and strengthening exercises. Yoga can be done by the young or the very old, but it is important to have a good instructor to prevent injuries. There are those that have tried to learn yoga on their own or with instructors that don't take the time to correct students postures and have had serious injuries, so try to find someone qualified and able to give you a little individual instruction without pushing you too hard within the class itself. Yoga can be done until a very old age (see. 84 year old woman, 93 year old woman, 102 year old man and can be done regardless of ones culture, religion, or racial background (see Black Yogis interview).
- Pilates. These are gentle exercise that use our own body and gravity to achieve results.
- Body rolling, and Yamuna body rolling. These are gentle exercise that use our own body and gravity to achieve results and also provide great ways to ease tension that lies deep in the muscles of the body.
- Martial Arts, martial arts for different body types, strengths and weaknesses
- Stretching
- Low impact workouts
- Weight training
- Core building
- Interval training
Spiritual / Inner Life
No matter what faith you are, or are not, it is important to cultivate a strong inner life, whatever that means to you, (ie. being out in nature or gardening, reading inspirational or empowering material, travelling to exotic locations, helping those in need, visiting temples and churches, meditation, prayer, pilgrimage, labyrinth walking, taking time for silence and reflection, going on retreats, using creativity and the arts as a spiritual practice, visiting a mentor or elder, listening to music that deeply moves us, visiting a long lost friend, spending time with animals or pets). Cultivating an inner life can take many many forms. Believing in something bigger than ones self can sometimes invoke a significant healing response. It can also bring you courage and strength when needed and you don't need to be religious for these effects to take place.
Parents with Children with Sickle Cell
See Parents with Children with Sickle Cell section.
See Parents with Children with Sickle Cell section.
A Lifestyle of Avoiding Sickle Cell Triggers
Coming Soon.
Building a Medical Team
Coming Soon
Care for the Body
Coming Soon.
Depression and Sickle Cell
Coming Soon.
Cultivating a Lifestyle of Energy
Coming Soon.
Traveling with Sickle Cell Anemia
Coming Soon.
Cultivating a Lifestyle of Abundance: Financial Considerations and Sickle Cell Anemia
Coming Soon.
Intimacy, Sexuality and Romantic Relationships
Coming soon.
Dating with Sickle Cell
Coming Soon.
Coming Soon.
Building a Medical Team
Coming Soon
Care for the Body
Coming Soon.
Depression and Sickle Cell
Coming Soon.
Cultivating a Lifestyle of Energy
Coming Soon.
Traveling with Sickle Cell Anemia
Coming Soon.
Cultivating a Lifestyle of Abundance: Financial Considerations and Sickle Cell Anemia
Coming Soon.
Intimacy, Sexuality and Romantic Relationships
Coming soon.
Dating with Sickle Cell
Coming Soon.