My Body Hates Mornings!

This morning I got up at 8:15, made my husband's lunch, kissed him goodbye and said a prayer for his safe travel. It's my morning ritual when I'm physically able to do it.  For some reason, I broke part of my ritual by not going back to bed after he left and now I'm exhausted.  Last night I only had about 8.5 hours sleep.  To function at an acceptable level I need 10 - 12 hours. I call it my morning nap although I'm sure that's not the correct term.  Usually I've only been up about 30 minutes before going back to bed.  Now that I seem to have the correct medication regime, my mornings have gotten better and I'm so grateful. My morning pain now is a Level 3 or 4, so much better than the Level 7 or 8 and a huge difference form the Level 9 or 10 that I experienced in March, April and May of 2009.

When I was trying so hard to continue working, I would get up early enough to get ready with time left to take a short nap in order to have the necessary energy just to get to work.  Most mornings that plan didn't work too well because I still had the pain from the day before.  The pain never went away. The severity of the pain (Level 7 or 8 that eventually became Levels 9 and 10) was such that I would lean on the kitchen counter, trying to find a position that would ease the pain enough that I didn't throw up just to get to the car to leave home.

Bill's hours are 9am - 6pm.  I hate that he gets off so late. it takes away from our together time and causes us to stay up too late squeezing in a few more minutes.  If his start time, was earlier I wouldn't be able to get up with him.  As long as I'm not in a flare, I'm able to get up around 8 or 8:15 to have some time with him.  He's usually already had breakfast but I enjoy making his lunch and pretending that I'm able to be a good wife.  God blessed me with a wonderful, loving, caring, God fearing husband.  Without him, I'm not sure where I would be today.  What I do know is that my quality of life would be much less.  He never complains about having to take me to the doctor because I can't understand or remember what the doctor says. He doesn't complain when I'm not able to do something we had planned or when he picks up my nine (9) prescriptions at the pharmacy.

By around 11:30 this morning I had only been up for three hours.  My pain was awful and didn't seem to have any interest in going away despite the meds.   Today's pain started at a Level 6. (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities).  Now it's down to a Level 5, (You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely.)

I had much more to do than I was able to accomplish.  It was all simple things - make a spreadsheet my meds, fill out a form for my LTD insurance company, make a list of things I'd like to blog about on my Apple Creek Cove blog (I'll talk more about it later) make an appointment for physical therapy and a Physical Abilities and Limitations Evaluation.  I wanted to sew.  Sewing calms my nerves and gives me a few minutes of feeling like I can still accomplish something.  Did you noticed four of the six things on my to-do list were illness related.   I'm beginning to believe that being sick with a chronic illness is a job in itself.  :-)

Cynthia

P.S. I just noticed that this posted with the time I started this morning.  It took me until 6:15 to finish with taking breaks from sitting, eating lunch, and taking a short nap.  :-)

How did it get to be May???

I started this blog with two goals.  The first was to share with others what it's like to live with fibromyalgia. It's hard for people who don't have this disease to understand what Fibromyalgia suffers go through. Even for friends and family who see us on a daily basis it's hard to understand.  It's almost as difficult for our family and friends as it is for us in that they must accept that the only thing they can do is provide emotional support and help with day to day chores so that we don't over do and suffer a flare and/or more pain.  It's hard on the Fibromyalgia sufferer to accept that we will have a condition that has no cure for the rest of our life. A condition that causes us to have a life that changes at the drop of a hat.  In the morning, we can wake up feeling great and feeling like we did pre-Fibro and two hours later our pain is going through the roof and we can barely put one foot in from of the other. This is my life with Fibromyalgia pain.

 My other goal was to document my pain, what I am still able to do and what fibro has taken away from me.  I've been told by more than one person that a pain journal is helpful to me and my medical team because it helps to see any trends that the pain, etc. has or when new symptoms begin.  Keeping a pain journal helps to learn how best to manage your pain.

A pain journal is where you write down everything relating to your chronic pain -- what kind of pain you have, what level of pain you are experiencing, what you were doing when the pain began and so on.  Finding time to document this information can be problematic. It's especially problematic when one of your worse fibromyalgia symptoms is short term memory loss. This pain journal seems to have validated that point since my last post was November 2011.  Flares (when symptoms have exacerbated such that you become close to or bedridden) send you over the edge with pain causing all of your everyday chores to fall by the wayside. This is a time when you really need to document your pain, how it began, how long it lasted and if anything helped to ease the pain or shorten the flare.  Having your pain and activity documented prior to the flare gives you an idea of what you should avoid in order to keep your pain under control. The time when you most need to document the information is usually the time when you are the least able to do so. I plan to show my husband how to use this blog so that he can document my activity and pain when I'm unable to do it myself.

Before my fibromyalgia got to the current level, I was a very organized. Now, not so much although I'm trying to make an concentrated effort to get organized again.  Being organized is essential (in my opinion) to maintaining a home when you have Fibromyalgia or any chronic pain disease.   When your home is organized, it take less effort on your part to keep your home clean, the laundry done and the bills paid. When you home is organized, it's much easier for family and friends to help you maintain it when you are unable to do it yourself.  I'll be talking about organizing over on Apple Creek Cove and about menu planning so that you always know what you are going to eat and have the groceries on hand.

In order to have an organized and beneficial pain journal, I did a Google search on pain journals.  I found some good guidelines that I'm going to use to build my own guidelines that hopefully will help me maintain this journal.  Tomorrow I'll share the outline I'll use in this journal as well as the pain intensity rating scale.