Exercise is Mandatory!

Yesterday I mentioned that I wanted to take yoga or tai chi.  I have a very good reason for this.

Thirteen years ago I was diagnosed with Fibromyalgia.  Even now, some people, including some doctors, don't think fibro is a legitimate diagnosis and seem to believe that the people who claim to have fibro are either hypochondriacs, lazy or drug seeking.  I can attest that these things are not true.

For me fibro is a set of symptoms that gets better or worse, but never goes away.  The pain is always present.  Before all this started with K, my pain level on a scale of 1 - 10, generally was in the 3-4 range.  The pain was there, but I could function normally most days.  And my normal is a lot of work!  I like to work;  I like to stay busy and productive.  I don't like to sit and watch tv (although I can certainly sit to read a good book!).  I always have found things to do - housework, yard work, spring cleaning (spring, summer, fall, winter, as well).  Ask any of my kids -  I have always been a clean freak!  I always said that I would not be defined by the fibro; it would not dictate my lifestyle.  And most of my life (I can find episodes of fibro to age 8) I have lived up to that.  I tried to even hide my pain from my family to the best of my ability and didn't let my pain effect the family's activities and needs.  I think I was pretty successful in that.

But fibro gets much worse with stress;  and baby, I got plenty of that.  On my good days my pain is 6-7, and the bad days are 9-10.  The worst part of constant pain is how it effects your energy level.  On a good day I can do about a third of what I used to do.  On the worse days, all I can do is huddle on the couch and wait for it to get better.  When it hits 10, my body takes over completely and I have to sleep.  I don't take narcotics for the most part.  I don't like how they effect my thinking skills, and addiction, not necessarily to the drug, but to the lessening of the pain, is a real concern.  I'm not going to spend my life,  any of it, walking comatose.  We have gone through the entire gamit of drugs that are prescribed for fibro and I don't tolerate them well.    Advil is my normal go-to drug of choice.  I try to manage the rest of the pain through sleep, rest. massage, meditation and light exercise.  Getting enough of the right kind of exercise is hard right now.  And rest seems to be poor to nonexistent.  The last time I visited with my rheumatologist, she warned me that I needed to prevent these severe flares, or I might never get better.  That scares me.

I know the time is quickly approaching when I will have to find in home nursing care so that I can take time away from caregiving.  Caregiving wasn't as hard when I could still see bits and pieces of my K left in new K.  But that time has ended.  I almost never see glimpses of K as he was before.  He is still nice in his way, but he is no longer as cooperative.  And we've had a couple of episodes lately, when I have seen stress building up in him that I'm afraid some time soon could erupt into violence.  This is a "normal" componant of FTD, but not one I've had to be concerned with in the past.  And I hope I'm wrong now, but I fear I'm not.  As long as I do everything he tells me to do we're fine.  But one day last week, my pain level hit 10 and I had to take a narcotic pain pill.  So I called in a pizza, took a hot bath, took a pill and took me and my blanket to the couch.  He wanted to go to the golf shop.  Normally not a big deal, but this time, it was.  I tried to explain why I couldn't take him, but his solution was for me to give him the keys to the car and he would take himself.  Not possible.  He doesn't have a valid driver's license any more.  We went through the same 4 statements for about an hour and I was frustrated and he was frustrated.  The very same scenerio happened Sunday - only this time I was cooking dinner because the kids were coming over to visit.  I shortened the time frame by threatening to have my Mom come and get him so that I and the kids could visit.  It didn't lower the intensity, just the time.  I could not let him ruin, or cause me to cancel, my visit with the kids.  I don't get to see them as often as I want already.

There are no medications for FTD.  However, there are drugs that can help to control some of the behaviors.  So, my dear children, before you all call and yell at me, know this.  I have the phone call into his neurologist and am ordering the proper meds for this situation.