chronic illness chronic migraines chronic pain

Self-Care

Self-care is vital to living well with chronic illness. And I suck at it. Instead I push myself. I crash. I push myself. I crash. Over and over again. Knowing what you Should do, does not help me DO it.

Self-Care is “Self-care is a process of adaptation in response to learning about oneself and about ways to live well with illness. Developing capacity to self care impacted significantly on the way participants experienced illness, their view of themselves and of their future.”

So what stops us from our self-care?

A study Annals of Family Medicine looked at the barriers to self-care and found:

RESULTS Participants’ responses revealed barriers to self-care, including physical limitations, lack of knowledge, financial constraints, logistics of obtaining care, a need for social and emotional support, aggravation of one condition by symptoms of or treatment of another, multiple problems with medications, and overwhelming effects of dominant individual conditions. Many of these barriers were directly related to having comorbidities.
CONCLUSIONS Persons with comorbid chronic diseases experience a wide range of barriers to self-care, including several that are specifically related to having multiple medical conditions. Self-management interventions may need to address interactions between chronic conditions as well as skills necessary to care for individual diseases.
 Financial constraints are an important issue. You are told to take your medication, you can’t afford to so you take less. You are told you have to decrease your work, but you cannot afford to. Lack of knowledge is an important one. I want to a pain 101 class at a pain clinic to help us understand pain and how to cope… none of it was new to me having been in the pain game so long but it was new to the others. Yet, you have to go to the pain clinic to get it. Doctors do not hand out this information. I found the information myself, or learned the hard way. Having more than one condition where treatment of one hinders the other is difficult indeed. For example treating my FM with painkillers could cause rebounding and make my migraines worse, don’t treat it that way and the FM pain is significant. Medication side effects are always an issue. So is constantly switching and trying new medications and this new side effects.

How can self-management help a person who has a chronic illness?

Once you’ve decided to take an active role in managing your illness, you and your doctor can work together to set goals that will lead to better health. These goals will be part of an overall treatment plan.
Pick a problem. Take an honest look at the unhealthy aspects of your lifestyle. Start with a particular behavior that you’d like to change in order to have better control of your illness. For example, you might decide that you don’t eat enough vegetables, get enough exercise or take your medicines as your doctor tells you to.
Get specific. Once you’ve identified a problem, state a specific goal for dealing with it. The more specific your goal is, the more likely you are to succeed. For example, instead of saying, “I’m going to exercise more,” decide what kind of exercise you’ll do. Be specific about what days of the week you’ll exercise and what times you’ll exercise on those days. Your new goal might be: “During my lunch hour on Mondays, Wednesdays and Fridays, I’m going to walk 1 mile in the park.”
Plan ahead. After you’ve stated your goal, think of things that could go wrong and plan how you’ll deal with them. For example, if it rains and you can’t go to the park, where will you go to walk? If you plan how to handle problems in advance, they won’t prevent you from meeting your goals.
Check your confidence level. Ask yourself, “How confident am I that I’ll be able to meet this goal?” If the answer is “Not very confident,” you may need to start with a more realistic goal.
Follow up. As you’re working toward your goal, check in regularly with your doctor to let him or her know how you’re doing. If you’re having trouble following the plan, talk to your doctor to figure out why. Your setbacks can be learning experiences that help you make a new plan for success.
One of the most important things to remember is that you can change your behavior. Even though your illness makes you feel helpless at times, if you work with your doctor to set goals and you take responsibility for following through with them, you can make changes that will lead to better health.

When it comes to this outline of self-care I actually do succeed well. The pain clinic told me to exercise so I did. I started very, very slowly and very, very slowly increased my time. They told me to meditate. I did. And made it a daily habit. Give me goals, without the stress of work, and I will achieve them.

What I am not good at is normal self-care. Sometimes I am great at it. Sometimes I feel guilty and just don’t listen to myself. Feeling like I am wasting time better spent doing something else. Like I am not worth it. But we are worth self-care.

Rest/Nap: we are chronically ill. Chronic pain and other chronic illnesses. We are fatigued.  We need our downtime. We need to rest at times. Yet I feel guilty when I do so. Nevertheless I need the rest due to the immense fatigue.

Pacing: Pacing is something I have known to do since my early twenties. I understood FM meant pacing myself. And when I do it, I manage much better. When I don’t I can flare for days. Sometimes I choose to go to an event or do something and accept the painful consequences of days of pain. Like going on a vacation, knowing the pain that comes with it. But sometimes I just push myself because I feel like I must. Like when working full-time. I do not pace, I cannot pace… I just push through the pain, crash, push through the pain. But housekeeping is very paced. I clean one small thing one day, something else the next… eventually starting all over but no cleaning sprees for me. Pacing is vital for us to follow.

Limits: We must know our limits. When exercising we find our limit and slowing, carefully push it in order to carefully improve. In life we have to understand where our limits are so we do not exceed them extremely and cause ourselves a great deal of pain. Keep ignoring it, more pain.

Exercising: Never exceed your limits, or you will feel a great deal of pain and feel like you are failing. Go for a ten minute walk to start. Then after a week or two increase it by a few minutes, then a few minutes more. Very carefully. But it is important self-care because it helps mood, it helps with muscle deterioration which makes pain worse and motion it good for us. Yet I find working full time this is impossible to maintain. Because then I exceed my limits.

Meditation: For me this is part of my self-care along with relaxation breathing. It has many benefits but mostly I do it to reduce stress.

Hobbies: I am told by my psychologist it is important for mood and self-care to spend some time every day on things we enjoy each day.

 Pain plan: This is the part of self-care that we need for high pain days. fibro flares. 9-10 migraines. A specific list of things you do, or follow, to help you manage the pain. For example my migraines: migraine balm on my forehead, temples, jaw line. Ice on the neck. Lay down and rest. Either watch TV like binge on Netflix or read a book. Make the room as dark as possible. Take my triptan before a lay down. That is my action plan I enact for a high level migraine. Often before I go for the book or TV I will do some relaxation breathing or mindful medication while I let the ice work on my neck.
You can have different self-care practices. Just remember it is important that we do self-care. Managing our illness is important as anything else. If we take the care for ourselves other things fall into place.

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