The first session of my Chronic Illness/Chronic Pain Support Group was on 'Being the CEO of Your Life”. Living with a chronic illness or chronic pain, it is easy to feel like your life is out of your control. Here is a version of what we covered in that first meeting, with some ways to increase feelings of control in your life.
- Get out of the ‘patient’ mode: The 'patient' mode of passively having others do things to you and for you is fine for acute illness, but not for chronic illness. This is your life. It is up to you to call the shots. Even if you need people to help you, you can have control of who, what, when, how etc.
- Grieve for the life you expected: We usually think of grief as what we go through when a person dies. Those feelings you feel at no longer being able to do what you used to do so easily is also grief. Don't deny those feelings. Let yourself work through them so you can move on.
- Accept your illness and/or pain as your reality and your current ‘normal: Throughout our lives we move from one role to another, from child to college student or employee, to spouse, etc. Each one is 'normal' for us at the time. Wishing you could be a child again won't make it happen. Wishing you could go back to the way life was before the pain or illness started won't make that happen, either. Accepting that this is your reality allows you to work with your issues, rather than fight against them.
- Redefine how you describe yourself: If you describe yourself as fatigued, worthless, disabled, etc., that is who you will be. You are denying the more positive aspects of yourself. If you define yourself as a construction worker, but you can no longer work, you are living in the past, and ignoring who you are now. Look at your life. Find positives that define you now: I am creative, I am calm, I am well educated, I am persistent.
- Revise your priorities, set relevant goals: Old habits die hard. Sometimes we continue doing things the same old way, even though circumstances have changed, and those old habits no longer fit our current life. Take time to think about your routines. Are you using your energy in ways that support your needs and wants?
- Educate yourself about your illness and pain: The better you understand how your body functions (and malfunctions) the better you can care for your needs. This education is on 2 fronts- learning about the illness itself, as well as becoming attuned to your own body and how it reacts to things. Get involved with a support group, either in person or on line.
- Be an active participant in your care: Partner with your doctor(s) in your treatment. Ask questions when you don't understand; make decisions that are best for you, not what the doctor thinks is best, or what your neighbor says she did. You may need to educate your doctors about your illness. (It is unreasonable to think that a primary care physician would be able to keep track of every detail of every illness out there, just in case someone might come in with it.)
- Be assertive- say ‘no’, and ask for help: This is your life and your body. No one knows it better than you, and no one has a greater interest in keeping it functioning than you. As the CEO, it is up to you to set priorities and delegate tasks. Being assertive means being 'direct with respect'. Be clear about what you want/need. People will be more willing to comply with your wishes if you are polite than if you are demanding.
- Challenge negative thoughts: 'I am so stupid'- No, you aren't, you just made a mistake. 'I am useless'- No, you aren't, there are still plenty of things you can do. 'I'm just an old cripple”- No, you are not. You are not your pain/illness/disability. That is just a part of you. Focus on the other aspects of your self and your life.
When I read this, I cried. I never thought that the way I describe my self,defines myself.
ReplyDeleteBecause I have RSD does not mean that RSD has me?
But it feels like it does have me. It feels like it has me by the throat and has shaken me like a rag doll and has shaken my LIFE to the point that the one I have now has no similaries at all to the one I had before RSD.
I am a good worker that can no longer work, a good driver that can no longer drive, a good baker that can no longer bake-The list goes on and on.
It is to late to be the Mom that my kids needed 19 years ago (that was when I first got this) and now I am Grandma to 13 little ones and I know that I will never be able to be the Grandma that I wanted to be or the one that they need.
For years I have tried not to aknowlege the pain because I felt as if it gave it power over the little bit of me and life that I have left. I have done this for so long that I don't know how or if I can accept it (the pain) as part of my "reality". I know that I have to change the way I that I see and do things but I don't know how.
You are absolutely right that it can feel like the pain has taken over your life. Especially something like RSD, that gives you constant reminders that it is there. I hear your pain in your words, and the regret for the life you had taken away from you. This is where the grief comes in, to mourn the passing of that expected life. But you still have your current life to live, though it is far different from the life you expected to have. Focus on what you have, and what you can do. You can't bake, but can you sit in a chair and direct as your grandchildren learn to bake? What are ways you can participate in your own life, and the lives of your children and grandchildren?
ReplyDeleteNot acknowledging the pain is one way many people learn to survive with it. Unfortunately, the pain is there, whether you acknowledge it or not,and its not going away. Acceptance is not something that can be taught. It comes from mindfulness,from living in the moment,from being gentle with yourself instead of critical,from reminding yourself of your good qualities and the positives in your life. Keep a gratitude journal,every day.writing down at least three things for which you are grateful.Life isn't fair, but it is what it is, and it is up to each of us to make the best of what we have.