Growing into my Age

Two weeks ago, I turned 60. It seems odd to be this old since, as a child, I only ever imagined what it would be like to be 50 at the turn of the century. I never gave much thought to what happens after 50.

I thought I would feel old. I do, but I believe it has more to do with my illness than my age. All around me, I see 60 year olds who are still very physically active. Admittedly, they work hard, but they do not have the muscle stiffness and weaving stride that I’m coping with.

I do see many people my age scaling back at work. Especially at businesses where they respect older people for the contribution they are able to make and find a place for them, even if they are no longer able to perform at the pace they once were.

So, getting old is a little different than what I had imagined, but mostly because of the challenges that come with ME, not so much the actual chronological age, for me.

The best part is being able to slow down. Not feeling like I have to get everything done that need to be done. The worst part is that my brain wants to do more, but my body just gives out before my brain is done imagining what would be fun! For instance, I wanted to take my granddaughters swimming several days when they visited a few weeks ago; but I knew the sun and heat would do me in, and that I must conserve my energy so that I could last through the trip to take them home.

So, I guess you could say my life is “smaller” than I ever imagined it would be at this age. I imagined being able to be more active in my church. I had hoped to pursue training as a lay leader, and perhaps join the quilt group. Now, I’m lucky if I can get through my errands when I spend the day in Ames. Days spent at home are most satisfactory because then I am able to rest when I need to.

Along with the limitations of age, however, has come a peace about the past. My life has had its ups and downs: divorce, child custody battle, unemployment, foreclosure, moving, returning to college, and death of a dear grandchild. I believe I have come to grips with each of these “demons” and have finally been able to quiet the emotions that used to bubble up when I thought of them.

Probably most significantly of all, I am at peace with my family. My family of origin wasn’t perfect, but I’ve come to the conclusion that I don’t need it to be perfect. No parent is perfect, but I believe mine did the best they could for the situation and knowledge present at the time.

I also know that I have not been the best of parents. I know this because I see the way my children interact with my grandchildren. They are more patient, more attentive, more involved with the children than I ever was with them. Whether this change is because they wanted to do better than I did, or because society is doing a better job of teaching the art of parenting, I don’t care. I’m just happy that my grandchildren can expect to live better lives than their parents and grandparents lived.

And that’s all we can hope for, isn’t it?

Bubbie and the Pea

My three granddaughters (oldest girls from the "Michigan 8") visited in late July for about 11 days. We had so much fun with Sadie (aged 6), Cessalie (8), and Susanna (15/16).

One thing I love about the age Sadie and Cessa are at is the way their minds work. There were several times when one of them said something that nearly cracked up Papa and I (Susanna has given these moments in the past, too.) But the best story came out of one morning when the girls and I were laying on my bed watching PBS kids.

I have a chronic pain disorder (some combination fibromyalgia and chronic fatigue syndrome, which BTW is now called myalgic encephalomyelitis) that has affected my sleep patterns especially over the last 6 or 7 years. We have a sleep number bed, which helped for a while. But I've found the greatest relief at night from one of those memory foam pads (about 3" thick). The thing creates all kinds of problems with our sheets, but I really notice the difference when I sleep somewhere else, without the pad.

So, we're lying on the bed that morning and Cessa says, "Bubbie (yes, that's what they call me and it's a whole other story. Believe me, I've tried to get the Michigan 8 to change to Nana but they just smile and shake their heads no), why does your bed feel so good?" I explained about the mattress and the pad and then spent 1/2 an hour demonstrating the controls for the air mattress and explaining to them that they were not allowed to come in Papa's and my bedroom and just run the controls up and down any 'ol time they felt like it. "It's not a toy. You may lie on the bed, but you cannot push the buttons on the control."

Of course the next question was why do you have all this extra stuff on your bed. So, I briefly explained that I had a sickness that gave me a lot of pain, especially at night and the bed set up helps me sleep.

Two days later, we're driving in the car and Cessa asks, "Bubbie, you know that story about the princess and the pea? Well, if someone put a pea under your mattress, could you feel it?"

ROFL! What was I to say (I nearly drove off the road, trying not to laugh out loud!). I explained that, no, I wasn't quite that sensitive.

Kids! I do love the way their minds work!

What's the hullabaloo all about?

Dear Reader:

There is a political war going on in Washington over the research results surrounding recent efforts to find a cause for the illness that has been the bane of my existence for the last 22 years. In 1988, DH and I returned from a conference/personal vacation in Virginia Beach. We both came down with the flu. He got better (he has the immune system of someone from outer space) and I got very sick. Pneumonia, low grade fever, painfully swollen lymph nodes the size of my thumb, brain fog, inability to concentrate, and UNBELIEVABLE fatigue swept over me and lasted for months. I took a sabbatical from my work at the church for 3 months and was finally able to function at a low level, raising my children and going back to part-time work.

The disease has waxed and waned since then. It began to get worse after a series of stressful life events in the years after 2000. I tried partial disability/part-time employment; then returned to work full-time two years later. In 2007, my supervisor, noticing that I was constantly struggling with muscle pain and fatigue offered reduced hours. I went to 70% of normal hours. This allowed me to rest in the afternoons, but things just became worse. Later that year, I began noticing serious errors in the statistical analysis I was doing for my work. I had difficulty remembering research results in front of my customers, and increasing found that I was unable to organize my time and make simple decisions. I began loosing control of my life. I also suffered from headaches, lost my balance easily, and frequently walked into walls. Emotionally, I felt detached and on June 28, 2008 - I lost all hope of ever being able to function.

Those of you who know me know that this is NOT me. I have always been a high achiever. I loved the work I did at ISU. This was not an effort on my part to "get out of having to work!" That day, I admitted myself to the hospital to get some help. Over the next few months, all of the behavioral techniques they attempted to teach me were ones that I had been using for years (and were no longer working). Finally, I got in to see a neurologist and learned after an MRI that I had brain lesions "at such a level as to expect you were looking at the brain scan of a 70 year old woman." I was 58 at the time.

Subsequent testing ruled out multiple sclerosis. I believe I have Myalgic Encephalomyelitis. Researchers at the Whittemore Institute in Nevada have successfully isolated a virus (XMRV) in the blood of a large majority of a cohort of those diagnosed with chronic fatigue/myalgic encephalomylitis (CFS/ME). These results were further duplicated by two other research labs (one of which was Cleveland Clinic). The studies also found XMRV in the blood of nearly 4% of the control group, raising alarms about the potential health of the general population . Since then, 3 countries have issued statements that they will no longer accept donations of blood from patients diagnosed with CFS/ME out of concern for the health of the blood receivers.

There is a researcher at the CDC (William Switzer) who has staked his reputation on CFS being a psychological illness. He has developed a protocol for treatment that is basically a cognitive/behavioral approach. He believes teaching people coping skills and different ways of thinking will return CFS/ME sufferers to good health. Switzer has also probably made quite a bit of money for himself, as well as a highly visible reputation. The study his agency conducted chose to use different procedures to test samples from the Whittemore and (guess what) did not find XMRV in the samples. The paper from his study has recently been published.

Another study using the Whittemore samples was conducted by the National Institute of Health (NIH) and Food & Drug Administration (FDA) DID and find XMRV in a majority of CFS/ME sufferers and in 7% of the control group (non-diagnosed general population) (yes, I said 7%). Their paper was accepted for publication and was in galleys (final stage) when the CDC issued their results. Guess what happened. The CDC paper was allowed to go to publication while the NIH/FDA paper was embargoed (pulled back and not published). Do you sense the politics that are going on here?

So, if you've gotten this far in my blog, and are still interested (and like me, totally angry at the politics of this idiocy), please go to the web address listed below and sign the petition to allow the NIH/FDA paper to be released. There is also a suggested text to send to your federal representatives/any important people in Washington you might want to contact.

I thank you from the bottom of my heart for anything you decide to do. I especially covet your prayers for not only myself, but also anyone facing this illness. There are children who have it who cannot get out of bed, they are so weak. I fight it everyday. Some days I have to give in and spend the day in bed. Other days, I go out and try to act normally. The next day I am so tired I can barely move. But life was not meant to be lived in bed. So, even if I have to pay, sometimes I play, knowing what is coming later.

At any rate, thanks for reading/listening!

Here's the web site: http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress



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