Monthly Archives: July 2009

Overcoming The Fear

A lupus flare can really wreak havoc on a patient’s life. There are physical issues, work issues, family issues, and certainly mental issues. I can remember the first graph someone showed me depicting the flares and remissions that are the “norm” of lupus. It showed these hills with sloping sides and valleys with gentle curves. It made a patient believe that when a flare begins it climbs this slope to the top, stays there for an indeterminate time, and then slides back down to life as it used to be, “normal” you might say. Well, we all know down-hill slides don’t take a lot of effort. Just sit and wait until we are back on level ground. At least that’s what the graph depicts, and those not living with lupus might believe that. Lupus patients never would.

The climb to the top of a flare is exhausting. Not knowing how long the flare will last or how bad it will be takes a mental toll. As bad as all of this can be, recovery, or the return to “normal” is even more difficult. After a flare has reached its height, all a patient wants is to get back to their old life. Back to “normal”. But that is easier said than done.

Recovery involves a lot of physical effort. Dr’s visits are a big part. So are prescriptions medications and their side effects. Learning to trust you body and the things that are happening can be a real stumbling block. Just gaining enough strength and trust in yourself to get out of bed after a few days of not being able to do so, can be exhausting at best. After my most recent flare, and spending 6 days in bed, I finally gained enough determination to get up and lay on the couch. I was afraid not to. I thought if I stayed in bed one day longer I might die there. But the energy needed, both mental and physical, was almost more than I could manage.

Physical or occupational therapy may be a part of the recovery. Weaning yourself off steroids and trying to lose the weight gained while on it takes a long time. If the patient was an active person, just trying to get back in to some form of walking each day is a challenge. Returning to work and knowing that you won’t need a nap in the middle of the day takes a toll. But of all the things it takes to recover I, personally, have found that the mental block placed in my mind is the worst.
I forced myself out of bed after 6 days. I set goals for my work at week 1, week 2, week 3, and 1 month. I made to do lists of the projects I wanted to accomplish at work, and even some at home. It has been almost 2 months since the most recent flare and I feel as if I have a reign on me holding me back, and the reign is of my own doing, existing only in my mind.

I won’t let myself do the things I can physically do. I am afraid of having another flare. I won’t let myself work any longer than this arbitrary hour I have set in my mind. I am afraid of getting sick again. I won’t let myself write like I used to, making fun of my life and the things I do. I don’t do those things that make good stories because I am afraid of overdoing and being back in bad one more time. I do only the minimum work around my house, out of fear of being exhausted again. My house suffers. My plants suffer. My family suffers. My friends suffer. But I suffer the most by living in fear.
I’m sure I am not the only patient who experiences this “fear block”. It’s normal. It is the way we try to protect ourselves from another flare. From being sick. From losing everything we have regained in our efforts to have our life back the way it was.

The sad thing is, many of us will never have our lives back exactly as they were. Every flare changes us. We learn more. We begin to recognize what triggers our flares. We make modifications to our lives to accommodate the changes. Each day we try to feel a little more like we did “before” the flare but the invisible reign is always there holding us back. Some days we make progress. Some days it’s a toss-up between gaining and losing ground.

What you can’t see or feel is that with each day there is a small nick made in the reign of fear we live with. Just by living we are loosening the reign, cutting it from our life. Day by day its grip becomes less confining. Imperceptible, maybe, but still, it is happening. We take those extra steps. Work an extra 5 minutes. Cook dinner instead of ordering in, even if it is frozen pizza cooked in the oven. Watered the plants, all at the same time, instead of one today and one tomorrow. Folded the laundry the same day it was washed instead of letting it sit in the baskets for a day or two. Noticed the dust, even if you don’t do anything about it. Read a book with your children, grandchildren, or just for yourself. Wrote a blog to help other lupus patients deal with what you deal with on a daily basis.

Slowly, daily, the fear will subside. The reigns will loosen themselves. And soon you will be back to “your new normal.”

From the Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network

Remaining Positive While Living With Chronic Illness

In my fight against the chronic illness I live with everyday I have quite an arsenal of tools. I have a great team of physicians who try to take care of my health. I have pharmacists who do their best to make sure I get the medications I need and none that I am allergic to. I have friends and family who care about me and are always there to lend support should I need it. I have a belief in a higher power who I know has plans for me. I have hope for the future. And I have the belief that everything will be ok.

No, I am not a Pollyanna. I am a realist with an optimistic outlook. I am a person who believes that everything happens for a reason. I am a person who asks questions. I am a person who investigates. I am a person who doesn’t always believe without hard facts. I am a person who looks for alternatives. I am a person who will not accept the easy answer. I am a person who will get a second and third opinion before I accept a pat answer of “this is the only treatment available.” I am a person with a positive attitude.

Don’t get me wrong. I battle depression like the majority of people who live with chronic illness. I have been so sick at times that I didn’t care what the outcome was. That doesn’t mean that I ever gave up hope, it’s just that I was accepting of whatever the future would bring. That may sound contradictory to “having a positive attitude”, but it’s really not. To me, being positive doesn’t mean being Pollyanna, looking forever through rose colored glasses, or failing to see reality. To me, being positive, means facing whatever is happening in your life with an attitude of “whatever this is I can get through it.”

Everyone experiences bad things in their life. Everyone experiences illness from time to time. The key to having a positive attitude is knowing what is happening. Having all the information available about whatever the current situation is. Believing that with help you can deal with the day to day occurrences. Not giving in to the “poor pitiful me” syndrome. Realizing that whatever situation you find yourself in, there are always those suffering more or having less. Having a good support system of physicians, friends, family and others who are going through or have gone through similar circumstances.

A positive attitude may not change your circumstances, heal your disease, bring you more wealth, or even stop the inevitable disease process. What a positive attitude does is allow you to deal with all of these things. With a positive attitude, pain hurts less, pity doesn’t visit as often, depression is something you can live with, change is viewed as a possibility, and hope is always a part of your life.
I just returned from The Mayo Clinic in Jacksonville, FL. So many people had a hope that I would return with answers to what was happening with me. While I did get some answers, I didn’t get the ah-ha answer that my family and friends wanted. When asked by them if I was disappointed, I said,” no, not at all. I went there without expectations.” That is my positive attitude. I do what I can. Accept the fact that lupus is a mysterious disease and answers aren’t always possible. And I live my life knowing that my life continues, with or without the ah-ha moment so many hope for.

From the Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network