Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

Just Another Day Before Paradise

Had Mommy drop me up the street today so I could do some Op shopping and hit Target (silent T, of course! pronounced Tar-gé) Picked up a great purple summer-weight fedora for Bali (or for any other reason  you can think of).

But then, ‘too tired’ hit (so much for pacing!). In my defence, there was no warning whatsoever. One minute I was jabbering away to a shop assistant (sorry – still having some manic moments) and then, the next moment, it was ‘I’m melting, I’m melting’ (think Wicked Witch of the West without the previous evil behaviour).

Had to make a phone call to my semi-step-sister-in-law (my Mommy lives in sin with Henry, whose son lives in sin with her (Miki) – told you I had a complicated family!), who was picking up my semi-step-nieces after school, for a rescue ride.

How am I ever going to be able to keep up my energy (and focus) for shopping (which means bargaining) in Bali?

On another Bali note, Mommy wants me to take out travel insurance. Theoretically, I have no problem with that – it’s only something like $80 for piece of mind (he! he! now I’m selling insurance!) except then we read the PDS (product disclosure statement) and notice that FM is NOT one of the pre-existing conditions covered by travel insurance! Now, if I(1) was their lawyer, and I(2) needed to go to hospital for any reason at all, then I(1) would be arguing that anything (and WE know that almost anything) I(2) was suffering from was caused by the FM, and therefore reject the claim.

Mommy says to me (at this stage of my argument): if I need to go to hospital, it will be at least $1,000.

I say: it will be at least $1,000 plus the $80 that we wasted on travel insurance.

Mommy: I just don’t want there to be a problem if something happens like the other night.

Me: I’d be quite happy to pay $80 if I was going to be covered, but, looking at their PDSs, I won’t be. Though, I’m still waiting on a return phone call.

Mommy: So, then we fight them…

Me: For a $1,000 claim, with $10,000 worth of legal fees, in an argument that we will be unlikely to win?

Mommy: why do you have to argue with everything I say? Why is everything a battle?

Thank heaven, we had arrived at home, as I stormed out of the car!

Feeling Tired? Fatigued? Spent?

Motivational Growth Spurt

Last night, I planned my return to work, my strategy for cleaning the house, where I would do yoga, Pilates and hydrotherapy; and my day with Z. (I’m sure I planned some other things, too, but I’ve forgotten now.)

Between last night and this morning, I ran a marathon, swam an ocean, climbed Ayers Rock, won The Biggest Loser finale, did 100 sit-ups, 100 squats and 100 push-ups…Or, at least, it feels like it! (You guys know what I mean!)

What I want to know is: how do I realign that motivational spurt (I seem to get it at about 8pm each evening) to fit in with my new (doctor’s orders) regime. I really, really want to do all of these things but, right now…I’m just SO tired!