Monday, October 26, 2009

i know i haven't posted in a long time...

and i think i read the best description today of WHY i can't keep up with anything these days:

What is fatigue in rheumatoid arthritis?
It's easier for people to think of joints as causing problems than to think of fatigue and the other intangible things that give RA patients trouble. That's because fatigue is not something you can put your finger on. It's a sense that you're not feeling up to par, that you're slowing down. Nothing else may be wrong that's obvious to you or your physician. You may or may not have joint pain or stiffness at that moment. But the fatigue is there.

Patients sometimes compare the fatigue of RA to recuperating from the flu - as if they're trying to keep up and can't do it. But that's not quite all of it. There's something more that's hard to define. The fatigue of having a systemic rheumatic disease is unique and can be very difficult for patients and those around them.

When people ask, "How are you?" and you say, "I'm fatigued," they ask, "What do you mean?" Well, it's not just being tired or feeling that you want to sit still. It's something deep inside that's slowing you down - maybe slowing your thinking or initiative. It's something telling you that you don't feel quite right.

Can RA fatigue be measured?
So far, no. It's an intangible symptom that, despite great effort, physicians have been unable to define nor measure. Nor can we determine its impact, which varies from patient to patient - and varies in its impact on any one patient over time. But enough people have complained about fatigue over time that we know - and you know - it's real.

Why is fatigue so difficult to cope with?
It might be easier to have a disabling condition that happens and then is stable; it stays the same, and you develop coping mechanisms to deal with it because you know what to expect and people around you know what to expect.

But that's not the way RA works. Big fluctuations occur randomly. One day you feel fantastic and can do everything you and others expect of you. The next day you can't even get out of bed. And every time that happens, you have to reestablish your coping mechanisms - both functional (who will prepare the meals, take care of the family, etc.) and psychological (how do I get through this with my feelings intact).

It's often easier to get through those fluctuations when you can pinpoint the problem - "These knees are swollen and painful" - than when the problem is as intangible as fatigue, which can occur in the absence of physical symptoms. Fatigue can be "hard to believe," especially when you've been feeling so well just before it hits. So, all too often, because you can't "see" it, you belittle fatigue. "Is it that I did too much yesterday or didn't get enough sleep last night, or is it my disease acting up again? And if it is my disease, do I really want to acknowledge that? Can I ignore it, push it aside and just keep going?" And that's exactly what you sometimes do - push it aside in order to feel like the person you were before you got this disease. Acknowledging the fatigue, and responding to this intangible sign of disease, is difficult - but essential.

(you can read more here)


all in all, i'm feeling very overwhelmed these days. i am trying to stay positive, but it's very hard to PLAN or COMMIT to even small things in life when you don't know how you will be feeling hour to hour. i have been experiencing extreme fatigue (also resulting in forgetfulness) for over a year now and i can't figure out how to manage it!

for a person like myself who is used to being independent and on top of things, and able to put in more than my "share" of responsibility and work, it wears on me that i feel like i let people down by not having any energy, not being able to help because i have to get in bed by 9:00 or forgetting to do big and small things that i told someone i would do! i am constantly feeling like i got 50 years older overnight. i feel lazy, unproductive and sometimes even unfriendly! it's just not a good feeling.

all of that to say, keep me in your prayers when you think of it! but it could be worse, most definitely, and i realize that. i am so thankful that i am able (for the most part) to function normally, keep a job, have wonderful friends and relationships and do really cool things! i am just learning how to combine these new developments with my lifestyle.

thanks in advance :)