A Hard Day and Night

I've been inspired lately by some recent posts by my "bod blog" compatriot Sara (at the Single Gal's Guide to RA)... and to be honest, depressed by own everyday life to the point that I think it might be therapeutic to share it (and thereby staving off my own insanity).

6:45am. iPhone goes off on the church bells carillon.
My very first conscious sensation is pain. I fell asleep in one of the many verboten positions - this time it was the ever-deceptive fully-supine position. Seduced by the endorphin high of stretching out after sitting all day, I laid down flat on my back (Puppy’s also a fan, because it gives her better face-licking access). I don’t move while sleeping, so as my joint contractures spasmed during the night, it pulled my spine into a C-shape up off the bed. Getting out of this position is excruciating and involves a lot of flailing around for something to grip to help me turn over. I finally roll onto my side and breathe, realizing it's going to be that sort of morning. There's nothing quite so demoralizing as waking up in more pain than you went to sleep with.

7:00am. I splutter awake again 

...by a crunching feeling in my right hip, and realize that my hangover from my bedtime meds has made me doze off while sitting up in bed again. Already late for my extra 15 minutes to shower. I try to seize the moment, resisting the temptation to cuddle Puppy on my way out of bed, and fling myself into my chair… and wince at the crunch I make as I land.

I run to crank up the radio, blasting the news to help me stay awake during my blurry first morning hour with a regular reminder of how little time is left.

7:15 am: I’m working my gimp tricks 

...pulling double duty by wiggling into my clothes while on the toilet.  I shift around on the toilet… and gasp when I lean right to pull my pants over my hips. There's that grinding pain again.

I shift around gingerly, practicing my Lamaze breathing and find a new use for the hole in the toilet seat – I finish putting my pants on with my “pain in the ass” well protected in the middle of the toilet seat.

7:30: The extreme muscle spasm I woke up with dissipated enough to sit up within 10 minutes, but grinding and effort of getting dressed combined with the pain I woke up with make me wonder if I should head it off at the pass in order to be functional enough to work. I weigh the decision to take pain medication, deciding that the woolly fog it adds to the difficult morning struggle for alertness wasn’t yet worth the pain relief. And there’s a small mercy… at least the nervy pain is behaving itself today.
- 7:45: I make time for a bowl of cereal if only because it’s one of the few things that properly wakes me up. I take it into the bathroom to eat while I do my hair and makeup. Right about now (if it’s a Monday), I’m cursing the token conservative debater who drives me round the bend.

BGF text messages me some morning smiles from her commute to work, dissecting the wardrobes of her fellow riders on the T. Maybe she's caught the lack of sleep in my text - she invites me for my favourite chick pea tacos tomorrow night at her house.

8:05: I've taken too long on my hair and makeup (as usual). I eye my tight stockings (that help keep my legs svelte and un-swollen) and decide I need a few more minutes respite before I tackle that particular obstacle. Instead, I struggle to get Puppy out from her warm nest on the other side of the bed. She’s harder to wake up than I was at 16 on a Saturday morning… and it’s as if she knows that I can’t reach her if she stays on that side of the bed. I get fed up and grab my grabber stick, which convinces her in a hurry that it’s time to comply with the Human’s demands. I know I’m running late so I don’t take the extra two seconds to run and get my reacher to pick her harness up off the floor… and instantly regret it. I know that I can only lean over a few times before I regret it – and I still have to get into my car and pull my chair in after me. I swear, for probably the tenth time that morning. Puppy snorts and eyes the door.

8:30: I make it into my car and take a second to breathe while the seat is reclined. I remember again that I keep meaning to put my air cushion on the seat to try to avoid the lateral pressure on my hip that makes car rides more painful, then mentally curse the growing list of things on my “honey-do” list to cater to the pain in my ass. Puppy sighs and snuggles into her shotgun seat, and I give her a tickle. The drive to work goes mostly without incident. I wonder transiently if I qualify for retraining as a truck driver.

Getting out is relatively painless but as usual I stumble into one of the worst (and always, the most surprising) feelings so far – the far left lean required for me to put the wheels on my chair seat lying on the pavement outside my door effectively “opens” my opposite hip up (as they’d say in yoga) creating an unbelievably strange/painful grinding sensation. I hang out there, mid-motion, breathing, as I wait for the spasm it caused to calm. I put the wheel down and try another tack – which works, despite the extreme forward bend it involves.

9:00: I pick up a double tall latte on my way in to work to clear away the cobwebs and get me over the initial hump, but once I’m in my cubicle, I’ve said hi to my co-workers and opened my emails, the worst of it is over. There’s something about the morning routine, the friends and busyness around my workplace that helps to propel the morning along, and usually I don’t even notice soreness as the hours go by. Occasionally (especially if I’ve had to take extra medication or had a terrible night), I’ll have trouble concentrating, but I try to mentally sort through tasks to ensure the ones requiring concentration are done at optimal periods of alertness.

10am: PumpNurse returns my call and we talk strategy about whether I should try turning up the flow rate in my pump again (so I get more pain medicine and anaesthetic throughout the day and night) or not risk the side effects. I ask what the side effects are of increasing the local anaesthetic concentration next time the drug is compounded for refill and decide that a little more dizziness is worth the potential benefit. PumpNurse gets Dr. Mac to write the prescription. I secretly hope that PumpNurse is the one there for the refill, because the sweet but slightly loopy young recent hire generally impales me three or four times and leaves a huge bruise. I hang up the phone and wonder again what my co-workers in our impractical open-plan office must think of my talk of drugs, flow rate, and concentration, and hope that they think I’m talking about a research study.

1:30pm: I’m feeling the soreness of sitting in one position all day.  I take my lunch with a friend in another building, where I get a few minutes to lie down and stretch. Later as I re-engage with work I realize I’m distracted. I think, do a mental check, go to the bathroom and realize that the right hip pain has been building slowly enough that I didn’t notice it outright at first. I debate again about meds vs. not, and instead dip into my bag of tricks at work and come up with one of my secret weapons: a Thermacare Heatwrap. No, not just for middle-aged back strain anymore, these little puppies are practically custom-designed for me. Rip open the package, tear off the backing and stick them inside your pants and nobody need know that your hip is trying to divorce itself from your body! You’ve got eight hours of perfect heat to help block out pain. Secretly thanking whatever blessed saint invented these things, I get back to work.

3:30 pm: I feel like my right hip is encased in hot concrete, and getting out of my chair for a trip to the Ladies' takes a 36-hour-labour's worth of Lamaze breathing to manage. Mid-afternoon post-lunch slump hits everyone, and this is my co-worker’s customary “cookie run” time. I offer to go with her just for the hit of fresh air and conversation – which is almost better than coffee for keeping my med fuzziness at bay and adding to my now-meagre pain tolerance at this time of day. I get back to work just in time to deal with the demands and other emails coming in hard and fast (why always just before the end of the day? I wonder again), and I manage to work flat out until well after 5 by sitting in an office chair for awhile, changing positions having given me a bit more time to wrap things up enough to go home before the figurative wheels fell off the cart. 

5:45: I come up for air when my carpool friend calls to arrange the ride home. I gingerly stretch myself out, realizing I’ve pushed it too far again, and that I’m not going to get much further than my bed that evening, even if I took a pill right then. Something about the late afternoon rush of things to do, combined with hitting my limit of hours spent jammed into a sitting position make a lethal combination that I haven’t yet worked out. The heat wrap is still going strong but its benefit is no longer, so I reluctantly knock back a short-acting tablet for breakthrough pain and an ibuprofen and head out. Picking up  Puppy on the way home is like a hit of bliss, and temporarily I don’t notice the leaden feeling of pain in my ass.

6:30: Resisting the temptation to get food on the way home means that I won’t get to eat before I hit the edge of my pain tolerance. I wince, remembering that I put off grocery shopping yesterday because I couldn't sit up anymore either, and it's not looking any better for this evening either. I arrive home on the ragged edge of major pain and it’s not even a debate in my mind… the only thing I can think about is relief, and I lie in my bed propped up with bolsters and tucked under my heating pad, with Puppy frolicking around me. I decide that dinner’s not that important, and as I slip into the obligatory 45 minute med-induced catnap, it looks like paying my bills, doing laundry or cleaning my apartment aren’t going to get done either.

7:45: I pry myself out of bed, noting that the meds gave me some reasonably comfortable sleep but beyond that not much lasting relief. Le Sigh.

I feed Puppy, grab some peanut butter toast for me, and get back into bed with some reading or a TV show on Netflix. I putter around a bit after that, trying to clean up a bit, but it takes only about a half hour of activity at this time of day before the leaning over and sitting sets off the crunching and pain again. I decide to go back to bed before I set off spasms that keep me up all night again.

10pm: I know Puppy’s desperate for relief at about this time, and again I feel guilty that I can't take her for runs anymore like we used to do. Pain or not, I get vertical again and take her for a walk. Once upright and ready I appreciate the walk with her, it’s just the getting there that’s the hard part. We get home and I debate with myself about whether to shower now while I feel only 60% shitty or put it off for tomorrow hoping for a more comfortable window of time. I vote the former and instead wash up in the sink, take my twice-daily long-acting drug (split into two doses so it doesn’t make me vomit), one of the short-acting as the breakthrough pain at that point is threatening, something for the guts and the nausea side-effects, and fall into bed hoping to read. No such luck… I drift off almost as soon as Puppy snuggles up to my chest to lick my face, and she snorts in annoyance at my non-response and slinks off to sleep at the foot of the bed.

I wake three more times in pain and trying to change positions over the next two hours, finally giving up as the pain triggers spasms in my hip, groin and arse. I don’t have meds for this, so I experiment for the least painful position and pack down with heating pads. I read for a bit, fall asleep after awhile with the light on, dozing for an hour until I spring up in sheer desperation and take my third-line drugs saved for rare nights where the desperation for sleep and easing pain outweigh the consequences of more evening medication. My one and only comfortable sleeping position is now no longer comfortable for much longer than 30 minutes, and even worse, it seems to trigger a vicious cycle between spasms in my hip and grinding pain in the joint. I know the meds will make my morning hell, and mentally calculate 6 hours from the time of dosage and re-adjust my iPhone alarm time. It’s going to be tight to be at work by 9, but waking up sooner than six hours after that much medication is a comatose waste of time that usually involves falling asleep on the toilet and endangering myself in the shower.  I sigh, and pray for good metabolism to clear the meds – and my head – for the next day.

… and for a comfortable sleeping position.