Category Archives: Family

Stress and My MS

 

Our tree 2014
Christmas is coming.

Many of us stress about the holiday season. Some of us worry what that stress may do to us. With MS, it is thought stress can precipitate a flare, though all the evidence I have seen for this is anecdotal. It’s simply not ethical to cause stress on a group of people to see if they suffer an exacerbation which may have long term negative health consequences. So as I go through a fairly stressful time period, I started wondering what research is available outside of MS on the impacts of stress, and I came across two theories.

The first theory is based around the idea stressful events have major health impacts. In 1968, two psychiatrists came up with a stress inventory called the Holmes-Rahe Stress Inventory after asking more than 5,000 subjects to track their major life events. They then looked at how the events correlated with major health incidents over the following two years. Using this data, they scored each event and created the Holmes-Rahe Stress Inventory of the top 43. The cumulative score from the events present over the course of a year was used to categorize the risk of future subjects by putting them into one of three categories. http://www.stress.org/holmes-rahe-stress-inventory/

0-150 had little correlation with increased risk.

150-299 indicated a fifty percent chance for a major health incident in the following two years.

300+ represented an eighty percent chance for a major health incident in the following two years.

As I read through the index, my score was between 215 and 272 depending on how strictly I interpreted the categories. So in my effort to minimize my concern, I started looking for reasons this test does not apply to me. I started with the date the list was created, more than 45 years ago. I thought I was in the clear until I found articles indicating it had been studied more recently with updated versions for the changing times. The only new item was death of a pet…which I recently had. This means I score even worse with the update… The biggest draw back on the following study done in 1970 to validate the original findings was the sample was only men, but this does nothing to invalidate its findings for me.

This got me thinking about just what being in the second category meant. It meant I had an increased risk, but how strong is the correlation between the risk category and the health events. It turns out the correlation is only 0.18. So while there is a statistically significant increase in likelihood of health events, it is not quite as dire as the fifty percent in the category would make one believe.
The first approach deals with the impact of stressful events, and I do not score very well on it, but given the low correlation studies have found between events and health, maybe the better prediction can be made looking at day to day living.

It seems there is a general consensus the daily look at stressors is a more accurate way to look at stress and its impact on our body. The best study I have seen described is from Ohio University in 1992, so again dated material is an issue. Still for the sake of understanding, the write-up at http://www.ohioupsychology.com/files/images/holroyd_lab/Holm%20&%20Holroyd%20The%20Daily%20Hassles%20Scale%20Revised%201992.pdf
is excellent. On pages 8 and 9, it lists seven major categories of daily hassles and components within the categories. The major categories are Inner concerns, Financial concerns, Time pressures, Work Hassles, Environmental hassles , Family hassles, and Health hassles. This report looks also looks at the hassles as possibly being just two categories, inner and external, before coming back to the seven mentioned above with all their elements.

As I look at the measures listed for this approach it quickly became apparent, I would do no better on the daily hassles than the stressful events, and I decided I was better served to look at what I can see stress is actually doing to me. After all, I really do not need various scientific studies to tell me I belong in the “stressed” category. I knew this going into the reading. So I am back to noting far more MS symptoms which is right in line with the original theory about stress causing MS flares. However, I do not have the symptoms constantly. As a result, they do not rise to the level of a flare I need to report. Instead, I just note more times when my vision blurs to the snow channel with quick head movements up and down and more incidents of pain and spasticity.

I guess I should just be thankful and employ all the stress relief techniques I know while praying the rest of my family and friends will do likewise.  For now, I will just go back to my inner Karaoke song of choice, good for any season:

 

Share

Imagination and Hope Forever Intertwined

First food at new house straight from A's hand in an effort to win Peppa's heart.
First food at new house straight from A’s hand in an effort to win Peppa’s heart.

Hope begins with a belief in an ever-changing world. It requires us to imagine a state of being other than we currently experience. Now some days, hope is a wish for things to stay the same, like the first time seeing a look of affection in a lover’s face. Some times hope is for a change in our existence, even if the chances of such a change happening is slight. I think of the lottery, aka, “the stupid person’s tax” as a prime example of such hopes. Some times our situations lead to hopes of both types simultaneously. Every time I refuse to wish away the pain of my MS, it is because of hope. I hope the feeling of pain means I might one day feel as much pleasure as my current pains. Of course, this hope is also a fear of change as my real fear is losing all sensation. Therefore, my refusal to wish away the pain is in part a hope for beneficial change and a fear of a change that would preclude the better alternative.

Still, all hope is rooted in a belief in the world’s change. I will always remember my two lunches five years ago with Michael, the homeless man who had no concept of what would make his life better. (Michael).  He remembered having a family, but both times did not even think of having them around again as something that would make his life better. He was not particularly unhappy as I would expect somebody without hope to be, but this is instructive too. Those who have truly lost hope can no longer imagine “better.” So long as one knows the opposite, despair, one knows what is missing. The truly hopeless lose the concept of change. For Michael, “the world is good because the word is good, and the word is good because God is good.” That mantra was his guiding philosophy as he lived on the street, and a concept of change was nowhere in it.

I think of this some days as I ponder the question of “acceptance.” Should I just accept the limitations my MS places on my life? So often, I read and hear of MS patients having to grieve for, but ultimately accept, their new limitations. I know the psych 101 answer always has acceptance as the last stage of a healthy grieving process, but I keep coming back to it as the warning sign above the gates of Hell in Virgil’s Divine Comedy, “Abandon all hope, ye who enter here.” For me, acceptance of “what is” means giving up hope for a better alternative than what I currently face.

Acceptance is forgetting the possible alternative experiences and no longer acting on their possibilities. Yes, often the efforts are a complete waste. They probably seem foolish risks to many as the outcomes are easily predicted. The costs of abandoning hope may be more subtle, but are they any less?

As parents, I often think hope is one of those things for which we are most responsible when it comes to teaching our children. My oldest daughter still hopes to do many of the things her friends find easy, like monkey bars or math or… These are things with which the smart bet would be she would probably struggle. Still, I look with pride every time I see her falling from the monkey bars or using a number line. When she came to us, we did not know if she could grow to be more than a blob, but now she is a nine-year-old girl nervously making her way through life as best she can.  If she tries and fails but continues to try, who is to say she will not  succeed in some of things she wants to do that seemed impossible.

For months, we knew our neighbor’s dog with which A had slept for the past 10 months would be leaving us. The anxiety attacks she has had lately have been escalating, and in truth, she had reason. Two colonoscopies/endoscopy procedures and a ton of laxative meds in the last couple of months to try to determine the source of and treat her slow motility is a lot to endure. Even before our neighbors dog went back to her owners, A began asking for a dog of her own, who would love her and could rely on her. Her hope was to have the best bond with a new dog. Of course, we let her pick the dog, so there was no shoebox of poo. In a moment of humor to me, she did bring up the story in conversation. Part one of her hope, to get a new dog, has been realized. Part 2, to be well bonded with the dog, is a work in progress.

It seems crazy to bring the canine census in our home back to three, but there is much we are willing to do to preserve the hope and mental well-being of family. I have no desire to see any of us retrace Virgil’s trip through the gate.

One birthday wish came true.  A got a new dog to sleep with her by night and train by day.
One birthday wish came true. A got a new dog to sleep with her by night and train by day.

 

As a side note for all those dealing with either their own disability or a family member’s disability, there is a new web site dedicated to promoting places with good access and services for the disabled.  http://www.disabledonthego.com/ 

It will only be as good and useful as we make it, but how many of us dealing with disability wish we knew ahead of time about possible destinations?

Share