Monday, May 16, 2011

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.

1 comment:

  1. I look forward to reading your upcoming posts. No matter how organized and caught up I get, I always end up in a flare that knocks me off my feet for weeks. Then, when I feel well again, I spend all my time catching up. *sigh


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