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Living with Chronic Illness

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I am quite fortunate. I have lived for the past twenty years with a chronic illness. Knowing that there is no cure for the disease known as polymyositis, I've had to rely on a daily regimen of pills and medications that sometimes left me wondering if I would have felt better without them.

Clearly, I needed each one of the medicines at the time they were prescribed, but the side effects of some have left me with permanent scars. But I'm still around to talk about them. I'm also around to do something more important - I'm here to try to shed some light on the whole ordeal of living with a chronic illness - telling you that it isn't as bad as it may seem at the outset. The key, at least with most maladies that will be with you for the duration of your life is to follow your doctor's instructions, take your medications and get your rest.

Those three instructions were given to me very early on by my rheumatologist. I followed them to the letter and while it was difficult at times to obey and conform, I recognized that I had little choice if I was going to survive.

 

Rest was an essential part of the equation. Even if I had taken my medications as prescribed I always knew that without proper or sufficient rest nothing I could ingest could make me feel better. If I was going to function effectively I had to have, not only a good night's sleep, but I had to take some time during the day to recharge my body.

I recognize too that my line of work was a great benefit to my recovery and to my ability to cope with my illness both physically and psychologically. It would have been easy to have gotten down on myself, mired in self pity when at thirty four years of age I was being told that my life was about to take a drastic turn from which there was no known course of full recovery.

I was accustomed to being active, playing baseball, softball, bowling and even carousing at night were part of my regular routine. Well, that was coming to a screeching halt. Life was about to become tedious and any notions of a wild and crazy lifestyle were out of the question.

It took a little bit, but I began to think that all of this may have been happening for a reason. Maybe God was sending me a message. Maybe he was saying to me that I needed to slow down and given my history to that point, I wasn't capable of putting the brakes on myself. God took the wheel, manned the controls and caught my attention. That may have been the only way to keep me on life's track.

I recently read an article in which clinical psychologist Elvira Aletta, PhD., was asked to give five good rules for dealing with chronic illness. She laid them out this way:

  1. Be confident you have the right doctor
  2. Define your circle of support carefully
  3. Protect your health as you would a small child
  4. Create a new measuring stick
  5. Have dreams and strive for them!

Take it from someone who's had to make his way through the gauntlet. And let me hasten to say, I didn't make it alone. All along the way I've had tremendous support from family members, coworkers and doctors. I've done my share of reading and talking with others who suffer similar illnesses.

While the particular illnesses may be different, there are similarities that exist between many of the chronic illnesses. The one major similarity is the psychological affect these types of illnesses can have on the patient. Mood swings are most common and are often brought on by the physical changes one goes through as a result of the illness.

As pointed out in the Psych Central article written by Theresa Borchard, one has to be aware that one or a combination of factors can cause lowered mood when you have a chronic illness.

  • The situation. Loss. Grief.
  • Changes in appearance, mobility, independence.
  • The illness itself may have depression as a symptom.
  • Pain and fatigue.
  • Side effects and other treatments.
  • Social pressure to appear OK, especially hard if there's no diagnosis.

Any or all of these can make living with a chronic illness extremely difficult. But you can make it; you have to. Working through the disease by following your doctor's instructions, leaning on family and friends for support and accepting your vulnerability are critical to surviving a chronic illness.

Editor's note: Polymyositis (PM) ("inflammation of many muscles") is a type of chronic inflammation of the muscles. Symptoms include pain, with marked weakness and/or loss of muscle mass in the proximal musculature, particularly in the shoulder and pelvic girdle.

Eric Von is a radio talk show host and publisher of Brain Brawn & Body (BrainBrawnBody.com)

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Eric Von is a former radio talk show host and a publisher of Brain Brawn & Body (brainbrawnbody.com). You can contact Eric at eric.von@brainbrawnbody.com.

Comments

  • Guest
    Brenda Wesley Thursday, 25 April 2013

    I am so happy to hear you addressing chronic illnesses. And I am happy to hear you telling your own story. Stories are so very important. Please address the sometimes severe and chronic illness of (Mental Illness).In your editorial hearing you say sometimes I prefered not to take my medication because of the side effects and yet we continue to judge those living with a mental illness of having those same thoughts. Again, I applaude your efforts to health and the African American Community

  • Guest
    Allan Newson Sunday, 26 May 2013

    Mr. Von I understand where you're coming from. As a person that has a chronic illness also MS it is very difficult to explain to people how you feel when on the outside you look normal and inside you're going through hell with gasoline underwear on. Also depression has become part of my personal equation with the disease and to me that is the hardest part to overcome. Out of the 23 pills I take in the morning lyrica, and baclofen, tizandine all cause depression. I have my moments of weakness and everyday is another valley to cross another mountain to climb.

  • Guest
    Eric Von Monday, 27 May 2013

    Allan,
    Thank you for sharing. I certainly wish you the best.

    It is our responsibility to inform people of the difficulties that those of us living with chronic illnesses face in hopes that they will work with us to make our lives and theirs more manageable.

    Keep the faith and don't hesitate to ask your doctor(s) if there are some new or different medications you can take that may not produce the side affects you're living with now.

    Best,

    Eric

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