I am back!! Forgive me, committed and new readers, for not writing in a while. Recovery from surgery was slower than I anticipated though Dr. P reminded me that it may take time for my new medication to tackle the illness that took over my body. Six weeks later, I can tell you that I am gaining energy and mental clarity more each day.
It’s truly remarkable. I wake up at 6:30 each morning now after sleeping seven hours. I enjoy coffee and ponder how I should spend my day. I don’t plan my day around my level of pain and the density of my brain fog. I look forward to the daily stroll in the pasture, watching the dogs run, sniff, and pester Amigo. I stroke Amigo’s nose when he takes a break from this grass and greets me.
Last week, I started substitute teaching again. Last year, I tried to help out in the school where my husband teaches but was too exhausted after one day. While I don’t regret leaving my career as a school counselor for coaching, I do miss interacting with kids. I know many of the students and substituting is a great way to fill my need of teen time. This weekend is prom and one of my spousal duties includes being my husband’s date for the evening. I look forward to going this year and dancing with my date.
I review my Web of Life and consider areas that need addressing and strengthening. I
look at my web differently now. Health takes on a different meaning, for I no longer assess which part of my body requires greatest attention. I also look at personal development with fresh eyes and open mind. I spend more time exploring my spirituality. Joy & fun plans are now made without fear of cancellation due to illness.
I go to bed without fear of tossing and turning. I started writing a gratitude journal and document three things that I am grateful for each day. I indulge in new dreams and strive to shed old burdens.
I know the phantom inside me exists and while it sleeps soundly now, I realize it may awaken again. But I relish each pain-free day and look at life with a new sense of purpose.
Live more joyfully despite chronic illness.
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I recently listened to a podcast from the City Club of Cleveland and Ideastream that my mom told me about. The impressive medical panelists: Salim Hayek, MD; Jeffery Janata, MD, and Catherine Koppelman, MD are affiliated with University Hospitals of Cleveland and Case Western Reserve University, who provided what I found fascinating information on chronic pain from psychological, medical, and patient advocacy perspectives. There were several points that continue to resonate with me.
First, I found these statistics of chronic pain astounding:
116 million adults are suffering from chronic pain;
50 million of these sufferers say they don’t get adequate relief from their pain;
$635 billion in medical costs and loss of productivity each year;
Chronic pain is more expensive than cancer, heart disease, and diabetes;
Pain is not being recognized or reimbursed enough.
I know the last points are true as I’ve been doing itemized deductions for medical care over the last few years and how much I pay for office visits, tests, medications, etc. blows my mind every year!
For those who don’t understand the difference between acute pain and chronic pain:
Acute pain is based on time and is a result of injury or surgery
Chronic pain lasts beyond the normal duration of healing. Acute pain can become chronic. Chronic pain is also generally due to nerve damage.
Pain is a subjective experience where everyone’s association with the level of their pain and how they cope is different. Obviously, this makes it difficult for doctors to treat their patients and for patients to receive adequate care. In addition, medical schools provide little as far as curriculum. It is no wonder that people with chronic pain are also depressed.
But ever the optimist, I believe there is hope as well. More focus is being done on the brain. According to Dr. Salim Hayek, Division Chief of Pain Center at University Hospitals Case Medical Clinic, chronic pain is a memory of pain, even without any sensory input. In other words, pain becomes a habit and takes on a life of its own. Apparently, the new focus of studies on chronic pain is on the brain and not where we feel the pain. Perhaps someday there will finally be valid and reliable research on pain and the brain that will provide true relief from chronic pain.
Also discussed was the need for the medical community to make a more concerted effort in learning more about chronic pain and develop a multi-model approach where primary care physicians, specialists such as neurologists and rheumatologists, nurses, and alternative practitioners work together to help the patients. This is not always possible – I live in a rural community but am fortunate to have an excellent primary care physician – so being a self-advocate is critical. If you don’t feel comfortable with your doctor, find one who will listen and treat you with the dignity you deserve by listening, having patience to answer questions, and believe the pain you are describing.
In addition to the medical community needing to take on more responsibility, patients must also take responsibility. While the pain may not go away completely, it is critical to develop a pain management plan that makes you feel better. Doing low impact aerobic exercises – even if it means starting out walking slowly for just a few minutes. Take small steps but don’t give up. Muscles and joints hurt more when sitting around all the time. While I know it is hard, don’t give up. On days when you have crashed, I think it is okay to take a break but get back into a routine as soon as possible.
Finally, chronic pain sufferers need a support system. Friends, family, support groups (many exist online), and yes, even coaches who understand what you are going through are critical components to the chronic pain management plan. Feeling that no one really ‘gets it’ when you always hurt makes you focus too much on the pain and is depressing.
Every time I read new studies that provide hope for a chronic disease, I am both hopeful and wary. Maybe this medicine will turn out to be effective for many CFS and rheumatoid arthritis sufferers but I can’t get excited until more research is done. There have been too many studies debunked to truly believe there is a cure. At least this article supports what I have been convinced of for a very long time – RA and CFS are autoimmune diseases.
Take a look at the ABC News article and let me know what you think?