Fibro is sooooooooooooo frustrating

You know what I dislike most about this damned fibromyalgia?

Besides the pain, I mean.

It's the unpredictability of the syndrome that disturbs me more than anything.

Don't get me wrong, on days when the pain is at its peak, life is difficult, to be sure.

But it's the not knowing what's going to hurt when that makes me crazy.

And the not knowing what's not going to work well too.

For instance, one of the prices I pay for having fibro is the effect it has on my eyesight.

Yesterday, I could see just fine with my current prescription, thank you very much.

Today, those same glasses are just a little bit off, and my eyes don't want to give me a focal point.

I've tried every which way from Sunday to locate my focal point and it's just not happening.

We've run into this phenomenon at the eye doctor's office too.  On some visits, it's impossible for her to test me because she simply can't get a reading. She has, in the past, told me to come back when I "have a good eye day," as she puts it. Trouble is, we don't know when that day is (or isn't).

I never know until I start my day if my eyes are working or not.

Add this eyesight issue to never knowing which body part is going to be in a state of agony on any given day and you have a fairly good idea of that with which I'm contending every day of my life.

What does this mean in the scheme of things?

Well, do I plan a trip to anywhere at any time in the future? Do I dare?

I mean, reallly, what if I'm in a fibro flare-up on the travel day?  It would be almost impossible to make the trip.

And if I do travel, I know very well that I'll be inviting a flare-up, which could often occur while I'm on said trip.  How much fun would that be for my travel companion(s)?

I know what I have to do to manage my pain, and I know my limits.  While I'm at home, I seem to manage reasonably well.  But when I'm traveling, there are some things that are simply not in my control.

When you have fibro, this "silent syndrome," it's often difficult to convince others just how important it is to slow down and pace yourself.  I, for one, must plan a day of rest after a day of travel or activity (ie one day on, one day off). That can make for a lot of alone or down time for my travel companion.

Luckily, in our case, John loves to go off and take photos, so he can do that while I stay back in the hotel. But he feels bad leaving me alone so he tends to go out for very short spurts. And of course, because of my need for that day of rest, what could have been a four day trip turns into a seven day trip. That does not compute with my three-day limit for being away from home!

I am finding, however, that my regimen of weekly physio and massage therapy seems to be having a very beneficial effect on me.

And now that I've abandoned my walking program and got the bursitis under control again, my overall pain level is way down too.

My hands are still giving me fits though.  Must be the weather wreaking havoc with them!

And of course, my hip joints are still an issue and I guess that is not going to change until we find out just what the problem is and do something about it.  If we find out!   I'm due to be assessed at the Total Joint Assessment Clinic on February 7th.  I have two years' worth of X-rays to present to them and apparently, none shows degeneration of any degree to support the amount of pain I have or my seriously diminished range of motion.  'Twill be most interesting to hear what comes of the assessment, indeed.

Should the Assessment Clinic deem me to be in need of that ortho surgeon to whom my doctor referred me, I will then have to contend with the issue of undergoing hip replacement surgery -- twice.  I don't even want to think about what that will do to my fibro status.

My point is -- fibro sucks!  Big time!