30 Things About My Invisible Illness You May Not Know : Invisible Illness Awareness Week

30 Things About My Invisible Illness You May Not Know : Invisible Illness Awareness Week

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Last time I was on Pristiq, I remember having better results than this. Yea, the fatigue is improved-still have to watch the push/crash thing-but my mood sucks. I'm having a hell of a time accepting that I'm possibly too ill to ever go back to work. Or, do even a fraction of what I used to do in a day's time. I feel like my life is over. I look at unfinished work around the house, like the drywall inthe basement or stairway trim, or think about all the fabrics I may never feel like making into anything, or the weeds taking over the flower beds, and I wonder if I'll ever be truly functional again. I think about living with limited finances for the rest of my life, and realize how much I'll be having to sacrifice to make ends meet. Then, I wonder how we're supposed to make ends meet when Katie moves out, especially if I can't get disability payments. How am I supposed to make the house payments?

No grandkids, the kids are grown, no job, my health falling apart, losing my friends, the unfinished house, very limited energy to do much of anything. Yea, I'd say my life is pretty well over. So, what is there to get up for in the mornings?

I decided, since I was feeling somewhat better this morning but wanted to present a believable case when I go Tuesday to apply in-person for disability, I'd cut my Effexor dose in half. NOT a good idea. By early this afternoon, I was back in bed. After a two-and-a-half hour nap, I heard Randy mowing the yard. The resultant guilt pushed me out of bed, but the neurotransmitter deficit allowed that damned, sucking darkness to creep back into my thoughts. I started wondering where Randy hid the gun. That's when I decided to take the second Effexor. It still hasn't completely kicked in, but I did finish the vacuuming, and cooked supper.

The returning depression wasn't the only thing I noticed today. I've always known I have some OCD tendencies when under stress, but was still surprised to catch myself mindlessly wiping the same stretch of counter top over and over. That, and random phrases from my thoughts seemed to get caught in my mind, playing like an old scratched record. Charlene seemed interested when I admitted to counting silly things like biscuit dough kneading, predicated, perhaps, by hours spent knitting. I have noticed that the worries running through my head at bedtime appear to be on a continuous, repetative loop. Perhaps, by that time of night, the Effexor is starting to wear thin?

Anyway, I think I'll chalk today's experiment to a lesson well learned. And maybe I'll call Monday for an appointment to talk to Cindy, my practitioner, about a change in meds. I don't need to get so close to that black, sucking tarpit again.

The Counselor Made Me Do It

Going into week three, Post Apocalyptic Phase (P.A.P.),(as Baby Bro called my post-meltdown mindset). I'm still slogging through the worst zombie-fuge CFS attack I've had in a long, long time. Soul-sucking, boneless fatigue. No, not boneless-I can tell they're still there, they hurt. I'm good for about two hours of light housecleaning each morning, then I'm flat out in bed or on the couch, covered in two or three cats, and maybe a dog. Frustrated would be an understatement-all this time off, and no energy to do anything. Sucks.

Back at the Home for the "Temporarily, Acutely, Frighteningly Semi-Suicidally Deranged" (aka "Adult Crisis Intervention Unit"), I was advised to keep a daily journal. Good advice-assuming I had the get-up-and-go to get it all down in words. And assuming I could clear my brain cells past my perpetual brain fart fog, and string words into something worth writing. I guess I must be feeling somewhat better. Or, I miss interacting with coworkers and patients so bad, I need the keyboard to talk to. (Katie and Randy have been wonderful, but, man, I get so lonesome). Or maybe it's just the newly limited caffeine kicking in. Whatever-I figure my blog will make as good a journal as any. Hell, it ain't like I've blogged enough for anyone to still bother to read it, anyway. And if you do, bless you. My online friends have been wonderful-at least looking at emails give me one reason to get up in the mornings. You people are greatly appreciated, even if I usually fail to aknowledge it.

Tomorrow is the second of the counseling sessions I agreed to keep up, before the shrink would ok my parole from the Crisis Unit. The course of my P.A.P. has been, shall we say, erratic-short bursts of house cleaning, wallpapering, painting energy, interspersed with long stretches of sofa-slumped catatonia, highlighted by "what-the-hell-do-I-do-now" soul searching. I love, love, love my counselor, Charlene-she totally "gets" so much of what's been dogging me, including the CFS. Which is a double-edged sword. She understands the erratic energy-outages, the IQ meltdown leading to the inability to learn and retain (especially when under stress), and the resultant reluctance to even think about taking on another new job. The negative? She "gets it" beyond what I've been able to face myself. Not five minutes into the first session last week, and she's recommending I apply for disability, officially for the depression (as that's easier to document), but, in actuality, for the CFS.

Now, I admit that(possibly) having this option is a huge load off of my shoulders-I get a sinking feeling in the pit of my stomach just thinking about going back to the stress associated with any sort of nursing. Still, the realization that my career (such as it was) might be over makes me kinda sick. I feel like part of me, what helps makes me ME, has been pronounced end-stage, terminal, No Code. I'm proud to be a nurse. (Well, I was, until the last smouldering coals of burnout flamed up and consumed what was left of my soul. Now I'm just hugely ashamed of having gone down in flames). There's no satisfaction quite like knowing I've helped ease someone's genuine pain, or helped head off infection with a well-done sterile dressing change, or faced down some arrogant, overpaid MD on a needy patient's behalf. Bad as I resented having to leave the house, I needed having a place to go, something worthwhile to do, and, not incidentally, an INCOME to call my own. Disability, especially for a psych condition, feels like giving up. It feels like letting the bastards win-the admin, management, politics, the bullshit shovers who make nursing the hell-on-earth stress snakepit it can be. It feels like crying uncle, and kowtowing to the bullies who stand, smirking, over my prostrate form, then rush off to find their next new-grad-nurse victim to use up, burn out, toss aside.

OK, fodder for tomorrow's session, Today, I need to start gathering names, addresses, diagnoses from docs, lab work on my stupendously elevated EBV titre, old records documenting various previous meltdowns, etc. I'd rather pick my nose with a tire iron, but that's not an option.

First, to deal with dirty dishes. Old family tradition-when the going gets tough, the tough clean house. Then we hole up with tranqs and trashy novels. Grandma, this Xanax and book's for you.........

"Something For Everyone" basket, tickets benefited Heart Association.

The cats think the neatest things in the basket of goodies I won at work ARE the baskets. I suspect they ain't gonna be so fond of the Pedi-Paws that came as part of the prize. Might ought'a have a unit or two of packed red blood cells on standby, before I try it out on any of them.

Too many cats, not enough baskets?

Ticked off Tubby, too late to claim the bigger basket....and Ziggy ain't sharing!

Restoring the St. Rose window

A wealthy benefactor left tiny St. Rose a nice bequest-and BIL Kenny's contracting business landed the job of adding a tiny bathroom in the front of the old church. So, Kenny and his assistant (a good-ol', redneck Protestant boy, who identified the kneelers as "neat padded footrests!") were tugging to separate two pieces of conduit. The guys tugged and tugged, and the conduit finally slipped free-right through one of the gothic-style stained glass windows. Poor Kenny-I'm sure he had immediate visions of every nun/teacher he'd ever had, throwing up their hands, declaring his soul headed straight to Hell for breaking a church window. Not enough Hail Mary's in the world gonna help him out there....

So, anyway, he asked (begged) me to consider patching the window. Once I saw it, I knew that simple patching was out of the question-the window was so buckled, the lead so rotten, that several of the panes had already broken, most likely under their own weight. Multiple, heavy layers of old putty only made the mess worse, along with several incredibly inept (if well intentioned) previous repairs. I told Kenny that the only way I'd fix the window was to totally dissasemble and relead it.

Sooo.....this is "before", once Randy helped free the glass pieces from the defunct lead. Note the contrasting piece of yellow "repair" glass-one of several that had been simply puttied into place.

Wish I'd grabbed the camera for a "before" pic before Randy got so into taking the window apart. He was on a roll-and I wasn't about to stop him!

Almost finished-one or two more days of putty, polish, and rebar should do it. I'd ordered the repair glass based on texture-true antique glass is impossible to match perfectly. Sure wish the colors had been closer, though. I offered to reorder darker blue and yellow, but I think Kenny wants the window back in place ASAP. (Maybe the number of days it takes to get the window back in it's proper place will determine the length of his sentence in purgatory?? Wonder if Kenny's mama will light a candle for me, for saving his soul-even us agnostics like to hedge our eternal bets!)

I hope the folks of St. Rose decide to have the other five matching windows restored, even if I don't get the job myself. I need to post some photos of the church-120 something years old, it's so pretty.

Oh, and if I do get the job, I'm charging more to do the rest-I'd forgotten how much tedious grunt work is involved in staind glass!

Wind Chill

Merciless wind rattles the limbs,
My own, and the naked trees.
Living things, the trees cry in pain.
Trunks bow, twigs snap,
My fingers ache in sympathy.

Rebirth

Under a quilt of dead grass, dirt, and leaves
The wombs of flowers sleep in innocence
Infinite embryos of spring
Cradled within the mothering husks
Of bulbs, awaiting rebirth
Under a quilt of dead grass, dirt, and leaves.

We had Sandra's memorial service today-not a funeral, as she'd been cremated. Guess that's really about the only difference in the two. In between the service and dinner at Donna's, cousin Eddie, his girl Karen, and various other family members took the urn to bury between Grandma's and our grandfather's graves. Not sure that's totally legal, but what the hell....guess that was an unsaleable bit of cemetary anyway, so, whatever. I intend to make my own wishes clear-cremate me, but do NOT bury my ashes! How is that any better than being left to rot underground in a sealed box? Free my ashes, let them start over in the chain of life. Let me become fertilizer for the wildflowers, minerals in the grass the deer eat, mulch to loosen the heavy clay soil, dust in the wind....but, don't trap me underground, useless to the cycle of nature.

I can't believe how badly Sandra's untimely, unexpected death has gotten to me. It just seems the end to a family era-first Mom and Dad, now Cecil and Sandra. Guess it would help if I really believed they were all "fishing together in heaven", as Donna put it in her eulogy. (Death and depression are hell on athiests-pardon the pun). Donna, as usual, did a marvelous job on the eulogy-funny, warm, wise...just wish she hadn't had so many of them to give in recent years. I told her we needed to set her up at some local "open mike" comedy night, but first, she'd have to get some new, non-funeral material.

I have such a hard time being around my extended family-love them so much, but never feel like I fit in. Easy conversationalists, sparkling personalities, comfortable with each other, they're a force to be reckoned with. And then there's forgetable little me, nothing interesting or interested to say, holding up the wall over in the corner, looking to escape at the first polite moment. I always feel too fat, too dull, too homely, too out-of-touch and unfashionable, too rural, too undereducated, too.....whatever. I come home ready to pick apart everything about my life-my house, my kids, my pudgy little body, my job, my hobbies..... The one satisfaction I have is that I have probably the best DH of the bunch-well, maybe except for Tim, who quilts and set Nancy up with the shop. What a man!

Right now, I just want to groundhog into a burrow and not come out. Damn the holidays, I just want them over, the winter to go away and leave me alone, the house payments give me a moratorium, let me hibernate until I feel like going back to that purgatory I call my job.

I really, really need to wake up in the morning without this huge black cloud over my head. Randy and Katie are trying not to hover over me, but it's clear I'm scaring them. I swear I don't mean to-just wish I could dissapear for a while, not have to deal with anyone, not have to smile, not have to pretend my attitude doesn't suck, and I'm not ashamed of how big a loser I am.

'K, off to bed, to try again to sleep. What is it, something about sleep that knitteth up the raveled sleeve of care? Whatever.