Saturday, June 4, 2011

Fibro Flare Day - Oh, the Humanity!

I realized tonight while IM'ing with another chronic pain patient that I don't talk a lot about my fibromyalgia on here, even though I bill my blog as somewhere that I talk about what it's like to have the illness and what I deal with physically on a daily basis.

I think this may be because I'm afraid to sound as if I am complaining constantly and then no one would want to read what I write.  After all, doesn't whining get old when you hear it long enough and you start looking for something more cheerful, right?

I did do a quite long two part post for fibromyalgia day in May and you can find part one here and part two (my story) here.  So if you don't really know about my fibromyalgia or are new to the blog, you can find a lot of information about me in those two posts.  When I just went back and reread those entries, I realized that I must have a lot of unexpressed anger about this disease built up in my system.  Apparently, I am pretty passionate about fibromyalgia and other chronic conditions, even though I have never really considered myself to be an advocate.

Today, fibro came back with a vengeance and I had to eventually drag myself to the couch to wait out the flare.  Eventually, I gave up and came up to the bedroom, dragged the computer over to the bed, got as comfortable as possible, and resolved to write once again about what this disease is all about.

I had a very busy morning.  I can pack a lot in between the time that comes after I get up at 9:00 and lunchtime.  This morning I wrote a blog entry, got laundry to the laundry room, sorted, and started, got my shower, went through a bunch of quilts and books for my ongoing decluttering effort (which stupidly involved moving the books and the box they were in up a flight of stairs), and walked the dog.  After Jack had gone out on the leash (and remember, walking for any length of time can be quite painful for a fibro patient), Joey and I went over to McDonald's for lunch and then to Gamestop to trade in his old handheld system for a new one he's been saving for for months.  He was quite happy and I was going along just fine, driving home, when the fibro mallet swung down and all of a sudden I was so exhausted, I felt sick to my stomach.

Fibro flare in full swing.

Unfortunately, the world stops for no (wo)man or illness when you are trying to keep a household going and my incredibly helpful hubby had gone to Hershey Park for the day with Jamie on the band camp trip as a chaperone.  He left at 7:00 this morning and won't be home until after 1:00 tonight.  I was still looking at numerous hours here by myself and the dog was going to have to be walked again.  His night time walk is his longest and Justin always does the morning and night walks with the dog for me.  He has no idea how much I appreciate this and I once again realized tonight just how much he does by doing this one simple thing for me.  The younger two boys are not big enough to control our rambunctious puppy and Ben had to work tonight.  The dog walking was going to fall to me.

I still had laundry to finish and one of the things I did today was the sheets and towels from our bedroom.  Which meant that the bed still had to be made after switching the laundry around.  With a king sized bed, that is a very physical task.  After getting home, I managed to somehow get the laundry finished up, the bed made, Joey dinner, and the dog walked.  I am beyond exhausted now and every muscle in my body is screaming. 

I have discovered some tricks over the years to deal with the fibro and I have used every single one in my trick bag today.  In fact, I am writing this entry in bed with Icy Hot on my back and three pillows propped behind me, computer on my lap.  It's the most I can manage right now.  I suspect (and this will become a self-fulfilling prophecy) that the pain is going to interfere with falling asleep, but I am in bed anyway, because I am trying desperately to get myself comfortable.

The horrible thing about this is that there are chronic pain patients who are in worse shape than I am.  I have been learning quite a bit about Chronic Fatigue Syndrome in the last few days (also known as ME - a long medical term I don't know how to spell) and these patients are often-times not only housebound, but bed-bound.  They are unable to walk to the bathroom, take a shower, sometimes even talk above a whisper.  I have met some truly remarkable people with ME/CFS online in the last few days and they are absolutely some of the bravest people I have ever had the privilege of getting to know. 

One of these people is Toni Bernhard, author of How to be Sick.  She is an amazing woman who was a law professor in Southern California before going on a trip with her husband to Paris.  On that trip, she got sick.  And never recovered.  Her book is a guide that was written from her bed on her laptop over the brief periods of time she could focus on the task and write and it gives some wonderful coping mechanisms for dealing with chronic pain conditions.  It is also extremely helpful for caregivers of the chronically ill and (I discovered quite by accident) an excellent help for mental illness symptoms.  I highly recommend this book to anyone dealing with a chronic illness of any kind in any way.

What would I do if I simply could not function?  Every time I get a flare like this, I wonder that.  I have three children who are old enough now to be fairly independent, but the youngest still needs quite a bit of my physical presence.  Would we actually be able to keep the dog if I couldn't get out of bed?  What about the cats?  Could Justin possibly do any more than he is already doing to take care of me?  What would it mean to this household if I had to "quit" my job?

These are the questions that keep me up at night and that I worry about.  I don't know if the fibro has gotten as bad as it's going to get.  I hope this is as bad as it gets, because I am still able to pace myself and do some of the things I enjoy doing.  Yesterday I had lunch with a friend and shopped and was still able to take Joey to the pool.  In fact, that might just be why I'm feeling this bad now and when I have those times, I have to weigh whether it's going to be worth having the flare to do what I want to do.  Yesterday was more than worth the flare today.  But I just pray that the flares don't get worse as I get older.   I still have a lot of things to do.

There are so many different aspect to "me."  There is the mental illness aspect.  There is the fibromyalgia aspect and all of the pain that goes with both of those diagnoses.  And then there is the "me" who is inside this person with these illnesses.  There is still an essential "me-ness" that is in here.  I wish I could be more "me" more of the time and less a bipolar person or a person with fibromyalgia.  Maybe someday, I will be able to be well from both of these diseases and be "me" again full-time. 

I really hope so.



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