I imagine it's true of any long term illness (PMR/GCA or any chronic, autoimmune disorder) you have good days and you have bad days.
With me, I usually know a bad day, before I even open my eyes.
The first thing I notice is the dull headache. It's usually the same one I went to bed with, the night before. A few seconds later (as I try to turn over) I realise that my whole body is stiff and ungiving. {An image of the "Tin Man"crosses my mind, and a wan smile crosses my lips, because of all the characters in the world that I could have chosen to emulate, I have unwittingly chosen, the Tin Man, from the Wizard of Oz!}
As I slowly get out of bed and shuffle to the bathroom, my hips and thighs feel like I've run a marathon... or been hit by a bus (or I got hit by a bus, while running a marathon!) I actually have no idea what either of those things feels like, but I imagine this is pretty damn close.
"What the heck... Did someone lower the toilet in the middle of the night?" I don't remember it being this low! *loud groaning noise*
While sitting there, much longer than I actually need to, I find myself wondering how much I had to drink the night before. I then realise, that I didn't have anything to drink, the night before! Wow! Bummer, because this would be a real Jim Dandy of a hangover, as hangovers go.
My teeth are sensitive and on edge... it feels like I've been chewing on aluminium foil all night. And what is this thick, gritty film covering my eyeballs? Also, my head won't turn! WTF? "OMG, my neck must be broken!"
Getting dressed is always a challenge. As I attempt to put my socks on, I pretend that this menial task has become an official Olympic Event! Unfortunately, I usually get only the Bronze, because my timing is off and my technique is sloppy.
Once I've made it from the bed, to the bathroom, to the couch... I just sit and I slowly exhale.
My easy, breezy days of bouncing up, getting dressed, walking to the kitchen and making that first heavenly cup of hot coffee or tea are well over! No, now, I have to take my Lansoprazole (a proton pump inhibitor) and then wait a half an hour. I can then eat a small bowl of cold, plain, Greek Yogurt (Okay, sure... I do put blueberries and honey on it, but still!) I let that settle before taking my Prednisolone (aka "The Devil's Tic Tacs") which is a curse, disguised as a blessing, or vice versa, I'm not sure! In any case it's a corticosteroid used to treat, among other things, dreaded "inflammation!"
Who even wants that cup of coffee now??
With clothes on my back, yogurt and Pred in my belly, I'm now ready for anything! And if by anything, I mean a long sit down on the couch, to gather my thoughts, energy and stamina... yes, anything!
How can I be only 65, mentally feel like I'm 35, and physically feel like I'm 85?
It just doesn't make sense... the Universe is playing a unscrupulous trick on me, of this I am sure! I keep waiting for a guy to jump out of a corner, saying "Smile, you're on Candid Camera!"
The "good" days are not so easily recognised. I think it's that old "Fool me once, fool me twice..." adage.
I tentatively open my eyes, thinking that any minute my body will begin to rebel to the movement I'm imposing on it; but much to my surprise, it doesn't! I put one foot on the floor, and then the other. I wait a minute to see what part of my body is going to object. "Hmmmm? Odd. All seems well." As I start to lumber to the bathroom, I notice that I can actually move more nimbly... it's my mind holding me back, NOT MY BODY! I begin to walk, upright and with conviction and to my surprise I find that the toilet has been been put back to it's proper height! My eyes are seeing clearly and my head isn't pounding. What on earth is going on?
Now in the living room, raising the shades, I automatically turn my head to look out, at the weather and I realise, "Hey, I can turn my head!" I can actually look over my shoulder! It's a miracle!
Living in a defiant, uncooperative, unwell body is, needless to say, a pain in the arse. I mean yea, sure, it's my body; I've had it for quite some and I'm very fond of it... BUT recently, it fights me "tooth and nail," every step of the way.
It's like an adolescent child struggling for it's liberation and inevitable unyoking, but still needing me for my money and a ride to the mall!
It won't do as I say, but it doesn't have a clue as to what it should (or wants to) do!
It attacks itself with passionate, violent and sometimes harmful intent and then cowers in the corner, begging for forgiveness, healing and to made whole again.
It yells and screams (at the top of it's metaphorical lungs) and then it whimpers and whines, when the shit gets too real!
I honestly thought I was done "raising kids," yet my body has regressed to a point where it now requires 24 hour supervision, constant surveillance, and an occasional reprimanded. Not to mention being put in "time out" (although it actually seems to like that, for some reason?)
I rant. I rage. I try to ignore it. I sometimes confront it, but I always acquiesce...
My goal is to be a patient, understanding, zen-like occupant; one who accepts whats happening, without judgement or condemnation... but it's hard.
When your imperfect, defiant, elderly body kicks and screams and acts out like an inflamed (no pun intended) teenager, there is not a lot you can do.
Maybe have a small glass of wine (but not too much!) take a nap, watch a few movies; maybe some on-line retail therapy... and try to go with the flow.
Because as we all well know... this too shall pass.
{Image by Silvia Ciccu, Cagliari, Italy}
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