My Body Is My Teacher

  When will I learn not to overdo myself at work? I know I have to pace myself. The reason I am working my current job is so I can have a very flexible schedule. I have experienced the fatigue and pain from pushing my body.

  I know how my body responds, so why did I push myself yesterday? I was looking forward to a 3 day weekend with my husband and kids. I worked about 30 minutes yesterday morning and was feeling very weak and tired. I tried to focus on one area at a time, hoping this would help me get through the tired, weak feeling. I sat down a few times to rest. I kept thinking I would complete one more area and then I'd return today to finish the job. However, the thought of having to leave my husband and kids a second time in our weekend, made me want to finish while I was there.

  By the time I finished and returned home, I was so weak I had to sit in my car in our driveway to rest. I physically could not walk inside when I arrived at home. Also, I had sweated profusely while working. It literally dripped from my face onto the floor when I bent over. My hair was wet and dripping. My shirt was completely soaked. Gross and disgusting! I apologize for the detailed account of my appearance. Why does my body respond this way? I had not performed even half of the physical output of my old job. I cannot imagine how my body would react to a more challenging job. I finally managed to make it inside my house. I felt horrible. My husband brought me a water and had me relax on the couch. I'm thankful he was home to care for me.

  Today, I continue to feel weak and fatigued. I was awoken early this morning with shooting pain from my hip down to my knee. I will definitely be breaking my job into smaller tasks during the next week. Maybe I'll listen to my body instead of my personal plans next time. I hope!

  Hoping each of you have a pain free, enjoyable weekend.

  Stay Strong AS Warriors!

Enjoy The Beauty Around You

  Last Wednesday I did something I have not did in years. Two of my children and I went for a long, leisurely walk in our town. We don't live inside our town limits but we are there at least 2-3 times a week. However, on those weekly trips it's for business or grocery shopping. Those trips are focused on the task at hand. We don't take time to enjoy the beauty of our little town.

  I think I am not alone in feeling life gets too busy. I know when I was working full time, all I did was get up, go to work, get off work, come home, fix supper, spend a couple hours with my family and then do it all over the next day. There were days my son would have an after school activity and that made the day even more hectic. Also with my ankylosing spondylitis there were days where I came home literally exhausted and went straight to bed. I am fortunate my mother lives beside me so on my worst days she would fix my son supper. On some of those days when I was overwhelmed with fatigue, I didn't even have the energy to eat supper myself.

  To feel well enough to walk through our local streets was a wonderful feeling in itself. We have a beautiful town with much history. I love looking at the older homes as we walk. I can imagine how they must've looked to people in the 1800s. I imagine how the families had many children running about their yards. I imagine there was excitement when they heard the train whistle as it pulled into our local depot. Perhaps carrying a distant family member or friend visiting for a while. I remember the little stores, barber shop, and other businesses that were thriving when I was a child. I wish I had pictures of each of those places as they were in my childhood days.

  During our walk we arrived at one of the oldest cemeteries in our area. We continued our walk into the cemetery, looking at the old markers and reading the historical plaques. My son was amazed that some of the people buried there were born in the 1700s. There were even some markers that were so old the names had eroded over the years. One burial site is more of an entombment, with a grass covered mound. It has an iron gate with a locked door. Some families had their plots encircled by concrete curbs. There is an old cabin located on the cemetery property. It is beautiful with it's split rail fence and old timey gate.

  I will attach some pictures from our walk. I hope each of you will take time to enjoy your local town. Breath the fresh air, walk, and admire the beauty around you.

Hope you have a pain free day. Stay strong AS warriors!


The Difference In Beans and Burgers

  If you follow my blog, you know I haven't written in a while. Life has been a sort of whirlwind for the last few months. I have felt drained and fatigued trying to keep up. 
  In March, I began searching for some type of supplemental work to help our family. I was denied social security disability due to not having enough work credits. However, being denied benefits based on work credits does not mean I am not disabled. That's where the system is unfair, I am not able to work due to my ankylosing spondylitis, hence I am not able to earn enough work credits. It's just one of those crazy scenarios. Our family was struggling between buying groceries or paying for my medical bills. When you only have $11 to spend on groceries, you have to get creative.

  I knew based on my previous job, it didn't matter whether I sat or stood. I would experience stiffness and pain with my ankylosing spondylitis. I also had tried only working half days but still suffered and had severe fatigue. I began a list of what type of job I needed based on my illness symptoms. My list looked like this:
  1. Flexible scheduling
  2. Flexible options for sitting and standing
  3. Ability to work around my drs appointments
  4. Close proximity to my home (driving has become difficult on painful days)
  5. Employer who understood my illness
  I used to hold a cosmetology license, but I knew I'd never be able to return to that profession. My arms, shoulders, and neck would physically not allow me to cut hair. I was a cashier during high school, but that involves me standing for long periods. I also was a fast food worker during high school, but there again I'd be standing my whole shift. 

  Finally, I started looking at jobs in my neighborhood. I considered dog walking, selling crafts, child care, and setting up a thrift type store. Most of these had several good points, but also some negative. Thinking of dog walking, I'm sure a large dog pulling on a leash would not be favorable to my condition.

   I was still contemplating, when my daughter stopped by to visit. She got married last July and works three jobs. I'm very proud of the loyal, hard working, lady she has become. After she left, I was thinking about her places of employment. There was one that fit every item on my list of needs for me. I knew my daughter had to pay more in taxes due to this particular job. Also she is a newlywed and needed more time to relax and spend with her husband. Much to my relief, she agreed to give me her part time job.

  I began in March, cleaning our church weekly. It doesn't pay a lot, $60 weekly. However, $60 a week really helps my $11 grocery budget for 3 people. Instead of beans or rice every night, we can have some variety of food. You wouldn't believe the relief that $60 weekly brings to me, my husband, and son. 

  This job of cleaning our church is tolerable with my ankylosing spondylitis. I live within sight of the church, so no long commute. I only need to clean the building once a week, but I can choose any day. If I'm not having a good day, I can do it the next day. Also, I have the option of breaking the work up into several days. Sometimes, I clean the classrooms one day, then return the next day to clean the bathrooms. Leaving the auditorium and choir for later in the week, because they are the biggest areas to vacuum. Since the church is my place of worship, everyone understands my limitations. Another perk to working at my church is my husband and son are welcomed to assist me in my job. This has been a tremendous benefit. Especially, since I have been sick and in the Emergency Room this week. My husband and son was super sweet and cleaned the whole church for me today. I am so blessed.

  I hope each of you battling this disease, find a job that works with your condition. Don't give up! When you least expect it, the perfect opportunity may drop in your lap. I know we are not the only family struggling to pay the bills on one income. It is a scary place to be, but get creative. We all have talents although sometimes hidden. Use your talents to help bring in some extra cash. Remember, you are not alone. Many of us with AS, know the agony of wanting to work yet our bodies stop us.