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Elaine Carey

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Working with Chronic Illness
by Elaine Carey   
Rated "G" by the Author.
     
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It's back-to-school time, and I'm setting my strategies for a successful school year in spite of my psoriatic arthritis.

      Years ago, we had a working diagnosis-we thought-- of lupus and fibromyalgia.  In recent years, the symptoms have caused my doc to conclude that I'm functioning more like someone with psoriatic arthritis/ankylosing spondylosis.  At any rate, the meds are the same categories. 

     In 2004, when I wrote my last article on this subject, I was victim of frequent flares and brain fog.  I spent hours napping on the weekend.  My health has improved drastically, and my family really helps me with strategies to feel better and function better. 

    Here are some of the things that help: 

Eating fresh, healthy foods when possible

Having frozen backups and easy meals when necessary

Moderate exercise regulary--walking, swimming

Keeping the weight down

Adequate sleep

Minimize stress

Keeping up with relationships

Cultivating relaxing hobbies

Take meds on time

     Of course, those are all wild generalities.  Let me be more specific.  

     I pack my lunch the night before.  I am sure to include protein, fruit and veggies, and keep it all gluten-free.  My friend who has lupus takes a frozen dinner every day.  This helps her get a good balance with low calories.  I wish I liked frozen dinners!  Sadly, I detest them. 

     I have a carrying bag that is just right for my ipad.  I pack it the night before.  I do as much grading as possible ahead of time so I'm not lugging stacks of paper to and from work every day. Most of my work is paperless, so that helps enormously.  

This last year, I have begun to paint.  A lot.  I've painted dozens of landscapes for lots of different people.  So now, when I come home from work, I fix dinner and get in the painting zone.  It keeps me off the couch and out of the refrigerator.  I eat less.  I'm up and about more.  I de-stress when I paint.  This one hobby has made a difference in how I feel and how much I think about pain.  It has helped to redirect my mind. 

     During weeks when I have a lot of computer work, I wear wrist braces.  It helps to keep ahead of the pain.  I pack them in my work bag.  Since I work with Special Education, hours of IEP preparation is required.  On those weeks, I forego any gaming on my Ipad, wear wrist braces, and make sure my leisure activities include walking and back stretches.  In fact, the only time I do gaming such as Tetris and Candy Crush is when I'm stuck in a doctor's office.  The repetition works the same muscles as typing, and I end up feeling it.

     By now, my family has realized the limits of my energy.  On vacations and weekends, they know that I must rest. No one expects me to play cards until 1 AM.  They don't ask me to shop 'til we drop.  They help me with cleanup. We do other activities and wrap it up at a reasonable time.  I have learned to say, "No, I can't possibly do that.  I'll get sick."  I used to throw myself into impossibly stressful tasks and get truly ill.  No more, because then I'm no good for anyone. 

   If you have tips to add, please attach in comments.  I'm always looking for ways to gain more energy and improve pain levels. I don't take herbs, because last time I tried, my liver levels increased drastically.

    It would be great if we could add tricks such as hiring a housekeeper or personal chef.  More realistic is asking family members to pick up or run the vacuum or help unload the groceries.  When I have to depend on myself, if no one is home, I do smaller shoppings.  

     I also carry a small purse rather than a suitcase-sized one. 

      There are hundreds of small ways we can improve our overall pain levels.  It often just requires a little plotting and planning.  The end result is being functional for more time each day, and enjoying life a lot more. 

     

     

     


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