2010 – A Year That Was

January 3, 2011 at 8:56 AM (Just Stuff)

A part of me would like to dismiss 2010 and simply label it as a bad year, one of the worst years on my life. I simply can’t, for two reasons. First, there were many amazingly great things that happened for me, last year. Second, as often happens in life, good things develop from bad as lessons are learned and appropriate changes are made.

In 2010, I went on a vacation that was so amazing that I can hardly believe it really happened. My daughter, Sabrina, gave me the gift of traveling to San Francisco. I got to see an amazing city. We spent time with wonderful people. I got to meet some of her friends and she got to meet some of mine. The adventure was surreal. The best part of the trip was enjoying time spent with the amazing person she has become. The guiding principal in raising my daughters was to let them grow up and be whoever they wanted to be. Rather than guide, my role as a parent was to observe and encourage them to pursue whatever their heart led them to do. I never imagined that I would be the mother of a circus performer. Sabrina is a trapeze artist. She is a student and a teacher. Oh, she has another job, one that pays the bills, but that’s secondary to following her dreams. Labels hurt. Judgment controls. Sabrina encouraged me to fulfill one of my childhood dreams. I got to fly on the trapeze.

2010 was the year of the BP oil spill. It was a sickening experience that affected me deeply. I’m a transplant resident of the New Orleans area. It’s an area steeped in culture and the people are diverse. New Orleans residents are proud of their heritage and rightly so. I experienced the spill as a sudden crash. There are times that I love living here and times of great sadness and fear. I suffer from PTSD from having my home flooded twice and living through the aftermath of Katrina. I remember 1989, 1995 and 2005 as the worst years of my life. The oil spill was a reminder and a threat. The political bickering spilled into my personal life and my mind. It’s hard for me to love New Orleans in the summer. The heat makes my health problems nearly unbearable and the threat of a major hurricane is ominous. The threat of a hurricane bringing all of that oil ashore, Oil that killed magnificent creatures, Oil and sanctions that affected the culture and livelihood of proud Louisianians, frightened me. Fear clouded my judgment. I cannot judge.  Especially, in the summertime. Especially, in 2010.

What kind of year was 2010?  I’ve heard many people say they are glad it’s over. A few people have used the word “bipolar” to describe it.  All I can really say about it is I’m glad to have experienced it.  I’m glad it was.

It’s time to move into 2011. It’s a time to observe, a time to encourage.

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Change

August 13, 2009 at 2:57 PM (Just Stuff)

Oh my! It’s been a while since I have written here. Something happened to me today that I found so amusing that I just had to write about it. I felt as though I was thrust into a joke, albeit some may not find it so funny. I swear it’s true, including the punch line.

This morning, I was at the clinic where I go for my health care. While standing in line waiting to use an ATM, I was thinking that while this State financed facility isn’t perfect, my experience here has been so much better than my past experience with corporate run health care and how it is way better than the years I spent with no health care, as a result of lagging job skills, poor health, and the high cost of medical care. I said a quick prayer for our government leaders and hoped that they find a way to modify President Obama’s plan or replace it with one that assists those truly in need of assistance without taking options away from those fortunate enough to have options. Meanwhile, the gentleman ahead of me at the ATM retrieved his cash and put a twenty-dollar-bill into a change machine placed there for use in making change for the nearby vending machines. Quarters came tumbling out of the machine, as though the man had hit a jackpot. He let out an expletive, while he cupped his hands to catch the unexpected barrage of coins.  As he walked away, I innocently remarked, “That wasn’t quite the change you expected. Was it?”

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Paying the Price

April 1, 2009 at 12:29 PM (Fatigue and Related Stuff)

Yesterday, I had a good day.  It wasn’t very busy by “normal” standards, but I had some time to spend doing things I enjoy.  This week is unusual because, Tuesday through Friday, I don’t have any scheduled appointments, events or errends to run. Yesterday was Tuesday, so I ran the risk of overdoing it.  I woke at about 10:30 and my boyfriend, Gil and I went out for smoothies.  This, I knew, would give me the boost I would need to start my day.

My first task and main goal for the day was to do some laundry.  I’m one of those rare people who enjoys housework.  No one would know it by taking a look at my cluttered, messy home.  My former, healthy self kept a clean, comfortable home. I cooked, cleaned, gardened and eventually raised a family,  but gradually my body broke down.  Fatigue has been my nemesis and other symptoms have crept in, over the years.  The sicker I get, the more I enjoy doing things I had taken for granted before.  A few loads of laundry is a special occasion to be celebrated, in my life.

My second goal was to cut some fabric hearts for appliqué’.  I enjoy quilting and try to do a little bit in the evenings and on the weekends.  I used to consider this an activity to indulge in only on weekends.  I have a monumental stash of fabric and I have been trying to organize and sort it, a little bit at a time.  Moving boxes and going through fabric has become a physical task that, were I to wait until evening, I would never have the energy to accomplish.  I cut out about a dozen squares of pink fabric and ironed freezer paper hearts to them and then moved on to task three.

Task three was a walk to the corner and back.  I felt a little guilty indulging in another leisure activity.  However, this is a necessary step that I need to take.  Given limited energy and knowing that even the slightest physical energy could land me in bed the next day or even the next couple of days, I prefer to accomplish something tangible while exercising.  I have dishes to wash and gardening to do, but since I’m recovering from surgery I decided to take it easy and enjoy the diminishing cooler weather.

At this point, my energy was spent and shooting pains in my back sidelined me.  I found a comfortable position on the sofa to work on basting my fabric hearts while the usual Stouffer’s dinner baked. I managed a simple salad to go with it and enjoyed this healthy addition to our evening meal.  We spent the evening watching TV  and I had to forgo quilting and settled for playing Majonng while we watched.

Today, I’m paying the price for all that fun.  When I awoke at almost noon, getting out of bed was a huge task.  The left side of my face felt as though the numbness from a visit to the dentist was wearing off.  Every muscle in my body burns. It’s not the burn healthy people feel from exercise.  Oh, I do feel a bit of that and that feels good.  I burn as though a chemical has been mixed with my blood and is flowing through my veins.  I managed, through the brain fog, to get my usual breakfast of a bagel with cream cheese and a diet coke.  Two hours later, the caffiene is starting to kick in.  I’m going to use some of this artificial energy to get a few dishes washed and clean the cats litter box.  I hope to get another load of laundry done, but I hope not to overdo it, as I’d like to have another good day tomorrow.

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Fatigue, Depression, or Malaise

February 18, 2009 at 6:20 PM (Fatigue and Related Stuff)

I live with some degree of fatigue every day.  The main obstacles are, obviously, accomplishing tasks that others do without effort and finding satisfaction from small daily accomplishments.  Another obstacle is getting people to understand what I am feeling on a daily basis without getting angry at being misunderstood. It’s very difficult for anyone to communicate about challenges in their lives without others interpreting it as complaining or a plea for help.  I appreciate when others offer advice, however, what I am really looking for is to be understood.

I’d like to explain what fatigue is.  Often, it’s confused with depression or malaise.  These three conditions are often described as being tired all the time.  Being tired is a healthy condition.  Normally, it’s brought on by the activities of daily life.  A healthy person balances the mundane tasks of everyday life with activities that are enjoyable and often strenuous.  Being tired is a good feeling that is relieved by getting a good nights sleep.  Healthy people get up feeling refreshed, attend to their hygiene, perhaps grab a cup of coffee, and squeeze as many activities into a day as possible before becoming tired and ready for sleep.  People who are fatigued, depressed or suffering from malaise don’t enjoy that pattern of life.  The chemistry and structure of their brains makes it difficult to accomplish daily tasks.

I’d like to define these three conditions.  My definitions are based on my experience,  but hopefully can be used as a guideline to open communication.  I’d like to start with what fatigue is not.  Most people, including those in the medical community, confuse fatigue with depression.  This can be very frustrating.  More commonly, friends and casual acquaintances confuse fatigue with malaise.  This can be even more frustrating and even embarrassing.

Malaise is a sluggish feeling most people experience occasionally.  Commonly, it’s referred to as being lazy.  It’s a feeling of not wanting to get up and do anything strenuous.  Healthy people can overcome this feeling quite easily.  Often choosing healthier foods and exercise relieves the feeling and decreases incidences of malaise.  Usually, all that is needed is a boost.  A cup of coffee or just beginning an activity is enough to relieve feelings of malaise.  Some people experience this chronically.  In defense of some people who are considered lazy, their brain chemistry makes it difficult or impossible to overcome this feeling.

Depression is a more serious condition.  It’s characterized by a lack of interest in daily activity and in more severe cases a lack of interest in things that a person usually finds enjoyable.  It’s recognized in the medical community and can often be cured or controlled with medicine and counseling.  Other people who suffer from depression aren’t so easily cured.  When depression becomes severe, people begin to think about ending their lives.   People who suffer from depression cannot get a boost from a cup of coffee or through activity.  Compassion and medical treatment are needed to help depressed people find satisfaction in their lives.

Fatigue is what I have the most experience with.  Unlike malaise, there is no relief through nutrition or exercise.  Unlike depression, daily activities are interesting and desirable. Unfortunately, even enjoyable activities worsen the condition. Fatigue is an overwhelming feeling of exhaustion and need for solitude and rest. The effects of physical or mental activity are dramatic and delaying rest intensifies the condition.  Antidepressants, don’t help and often worsen fatigue. What fatigue has in common with malaise and depression is that it stems from an abnormal physical condition of the brain.

So far, the only relief for myself and others like me is accepting a slower pace of life and avoiding stress as much as possible.  Fortunately, fatigue is starting to get more recognition in the medical community.  One of the first steps in recognition or the search for a cure is communication.  I hope my definitions are helpful as a boost in meaningful dialogue.  Thank you for your efforts to increase your understanding of these three conditions

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Welcome To My Blog

February 18, 2009 at 4:22 PM (Just Stuff)

Hi. Thanks for stopping by.  I’ve been wanting to start a blog for a long time.

Mainly, I want to educate people about what it’s like living with Chronic Fatigue.  I’ve been living with it for at least 14 years and it’s been quite an experience.  It’s one of those things that people don’t understand.  The most frustrating aspect is that it’s not commonly dealt with in the medical community and many doctors don’t recognise it as a real condition at all.  It’s very difficult for people to grasp the severe impact it has on the lives of people who have the condition and their family and friends.

Secondly,  I passionately enjoy the world I live in and the people I meet. I want to record and preserve events and observations that bring me pleasure. The things that amuse me are small and perhaps boring to some.  Hopefully, what I write about will be amusing to others.

Thirdly, I’m a multi-dimentional person.  When I blog, I don’t want to be know as “that woman who has chronic fatigue.”  My passions are my family and pets,  gardening, quilting and crafts. Also, I’m an avid hockey fan. My obstacles are nutrition and exercise.

Please come back and visit me on my journey through life.

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Getting Off My Butt

February 15, 2009 at 3:29 PM (Just Stuff)

Getting Off My Butt And Ending Up In Yoville

So much for getting off my hiney, as my Facebook status says I was going to do. I actually wrote that I was going to and had every intention of doing so. The farthest I got was to shut off the computer and do some quilting. When I finished quilting for a while, I decided to check Facebook to see what my friends have been up to today and got sucked back into the Facebook thing…….

One of my notifications told me that a friend had danced with my avatar in Yoville. I’m still not sure what that means, but I’m starting to get what dancing means in Yoville and I know what my avatar is. What I don’t get is how she danced with my avatar and I wasn’t in Yoville, to the best of my knowledge. Since, after all it is the weekend, I decided to check things out in Yoville. I saw that there is an apartment building where my friends and I reside. Some of my friends were hanging out in the lobby. I really don’t understand why my friends don’t talk to me there. They throw snowballs at me, dance some funky moves, and emoticons appear above them. I haven’t played the game, but I have figured out how to throw snowballs and make emoticons appear above my avatar. I could only throw an occasional snowball despite being hit a few times and couldn’t dance at all. So, I decided to pay a visit to Vinny’s Diner where the game tells me that I can get energy by buying food. I bought some food and went back to my friends to show off my new dance moves. A couple of moves and I was out of energy again. I cannot help making the connection to real life with CFS. From there, I paid a visit to the Widget Factory where I am told I have a job. There I picked up a couple hundred bucks. Then I visited a few more establishments where I bought a quilt to hang on my wall and wallpaper for my bedroom. All my money was spent very quickly. Alas, again a bit too much like real life for me. After having spent too much time in Yoville, I went to Farm Town to plant the trees and get the animals settled in that my friends have sent me. Some of my trees were bearing fruit and the potatoes that I planted yesterday were ready to harvest….. Well, that’s another story………..

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