The Art of More – pacing for control freaks

“Urgh, my back is killing me” mutters a colleague as they stomp across our office rubbing her lower back. The guy I share desk space with visibly cringes and looks at me. Bless him – he’s in his own world of back pain but barely mentions it. He sees quite often first hand me returning from class white faced & pursed lipped as I struggle to maintain the air of someone who’s totally coping with life despite landing in a wheelchair and eating more painkillers than food at lunch.

Today has been a brilliant day. I’ve been a proper mum with the kids, but am suffering for other now by being awake & in more pain than my drugs can attend to. One of my goals this summer is to implement pacing. But do it properly, not just acknowledge I have limited spoons, then throw the whole cutlery drawer at each day. Clear project management is required here.

So what is pacing and why do I need it?

So, imagine you have a baseline which is perhaps laying in bed resting, you can perform an activity within your personal limits then will need some inactive time to follow it. There will be a period of overload because either you’ve tried to do something beyond your energy / physical capabilities or you’ve carried on with a standard activity for too long without a rest. So just like in physics, every action has an equal reaction.

I need to work out how my day at work looks in chart form to see how my pacing is going.

On an average day I’m bouncing above that overload line a lot & also not building in any proper recovery time. I’m also packing in more than an able bodied person could realistically contend with regularly. I’m not giving any leeway to accommodate being in pain. So, I need to attack this the only way I know how, and that’s with a list.  That list will contain all the tasks for tomorrow and then I’m going to prioritise them and build in rest breaks (I’m doing this now as I have control over my day which I don’t at work. That’s a different conversation & one I am going to have to have with OH sooner than I’d like). So tomorrow , or technically today as it’s 2am:

  • Get dressed
  • Get downstairs
  • Teeth / hair
  • Hair cut
  • Dye hair 
  • Wheelchair racing
  • Pre-holiday visit to inlaws
  • Buy physio tape, calpol, blister plasters
  • Lunch
  • Pack for holibobs 
  • Print out letters / tickets for holiday folder
  • Tidy room
  • Eat dinner
  • Get up to bed

Oh holy hell. That’s not a restful day before heading out! Almost everything on that list needs to be ddone due to imminent departure on our road trip on Sunday morning. Wheelchair racing is the only nice to have on there & TBH, it’s my last session for 2 weeks and it does me so much good (physically & mentally).

Ok, so let’s add priority:

  1. M- must
  2. NTH – nice to have
  3. CD – could delegate
  4. OTL – off the list
  • Get dressed – M
  • Get downstairs – M
  • Teeth / hair – M
  • Hair cut – NTH
  • Dye hair – NTH
  • Wheelchair racing – M
  • Pre-holiday visit to inlaws – M
  • Buy physio tape, calpol, blister plasters – CD
  • Lunch – M
  • Pack for holibobs – CD
  • Print out letters / tickets for holiday folder – CD
  • Tidy room – NTH
  • Eat dinner – M
  • Get up to bed – Massive

See how cleaning up hit the bottom of the list there? My mum would flip if she saw that! 

CDC sadly falls on the shoulders of Mr Geek & the kids, but I feel a little less guilty having braced myself and bulldozed my way through a whole week of him commuting to London (or from our perspective, not being there to get me out of the house & not getting back until after 7pm). It’s his first week at New Job which he is absolutely loving, but fuck me that was blindingly hard. I didn’t want to worry him, so slapped my happy work face on. I’m paying for it now though  with bones cracking as I breathe & thudding palpitations waking me each time I doze off.

My plan is to use this priority list tomorrow & see how it goes. If anything gets added to the list, I’ll note it down to see how I’m undermining my own paving without realising. The “oh I’ll just…” moments. 

Wish me luck! 

How would’ve you organised my list? Let me know how you prioritise your to do list. Is there an app for this?

Advertisements

#WhyImNotSleeping Chronic Memes

There was a Tumblr some time ago that touched a chord with us as parents. It was called Why My Child Is Crying. It saw the funny side of situations that make so many parents want to bathe in wine until it goes away. Here’s a few choice examples :

There was something about those parents sharing the photos of the realities of parenting a small human that made us feel a bit better about how we stumble blindly through parenthood hoping we don’t mess them up too badly. So that got me thinking. Surely there should be something similar for those of us with chronic illness who have the option of drowning or seeing the ridiculous & amusing in our situations. The thing that gets to me the most is my sleep pattern (or lack thereof), so here is is, #WhyImNotSleeping is now a thing. Tweet me your photos & I’ll collate them on here.

For now, here’s my own personal collection 😴

Perhaps there’s a noise in the room…

Or because of our nightly 1am visitor

Or maybe it’s because my friends are also nocturnal…


Finding humour in my strange little quiet & low lit world certainly makes it a nicer place to be. So, Why aren’t you sleeping?

A Cracking Evening

There are few things as satisfying as laying down twisted on my bed, grabbing my hip and pulling my SI joint back into line with a noise in the hollow place between a crack and a thud. It’s a noise that is audible across the room and can be felt through the mattress by my poor long suffering Geek. It’s swiftly followed by tingling down both legs as the nerves adjust to this more natural spinal alignment, and for a while the Burning acid in my pelvis dulls. CRPS is under control, bit not always.

I’ve perfected this stretch from daily yanking my joints about. I know the relief that it brings, but I also know the claustrophobic pain that ensues when it doesn’t go back in.

Today was an insanely long day, and my plan was to come home and going straight to bed. However, instead of sleeping it off, painsomnia has kicked in. Rule one of painsomnia is to stretch And let everything crack out. Sometimes just relieving the pressure helps, but tonight, despite soundinhb like a bowl of rice crispies hasn’t helped. I’m out of options for more painkillers and am onto the “suck it up princess” method of coping. I’m clearly still shit at pacing.

image

I spent too long in my chair today, so my back is sore.*
I didn’t check my posture often enough and ended up leaning on the arm rest, so my shoulder is visibly out.
I ignored the pain and literally gritted my teeth, so my jaw hurts and is creating a TMJ headache.

I’m tired, so the palpitations are more pronounced. All I want to do is drift off and wake up without something trying to drop off.

I’m tired & frustrated. I’ve also worked nearly 24 hours so far this week (not including stuff I bring home) and its only Tuesday!

image

*”sore” translates to still causing yelping pain after dihydracodeine, gabapentin, and a shot of morphine.

I’m Batman

I’m starting to become rather familiar with the wee small hours as I slowly electrocute a section of my body into submission where codeine & even morphine have failed to dull the ache of a subluxed joint that clunks back into place.

image

My breakthrough pain appears to be nocturnal at the moment as I’m resting quite a bit during the day, but the minute I try sleeping, it kicks my arse. It appears that I’m Batman, just with less crime fighting and more insomnia and husky voices.

We’ve invested in a couple of church candles with LEDs instead of flames to provide me with soft light which is dim enough for Mr Geek to sleep through, but bright enough for me to safely identify night time drugs by. I really appreciate being

image

able to see rather than scrabbling around in the dark. They’re completely safe so no fire hazards, but still made of real candle wax!

The wires in the photo are my butterfly pads for my tens machine which are currently dealing with my shoulder after it popped out yet again (I leant on my arm – rookie error. Also, surely it’s time for a new joint? I need this shoulder :/ ). Butterfly pads are essentially larger pads that combine 2 tens pads with a non connective strip in the middle. This means that you can place them across your spine without electrical pulses being on your spine, or in my case, place the pads in the optimum space apart to force my shoulder to twitch the joint back into place and sodding well stay there.

I’d been doing so well too! This evening, because the girls had been sent to bed on time due to excessive whiney behaviour (Beanpole doesn’t deal with tired well. Tired + Aspergers = irrational outbursts of claustrophobia. Beauty sleep was required) Mr Geek had tried out the hot stones I got for Christmas, which once we worked out how not to cause 3rd degree burns, were incredible around my SI. He had fun mocking the hippy people on YouTube who used different stones for heat and cold with his Science knowledge of heat transfer (their science behind using hot and cold to heal knots in muscles seems to hold up against his BS filter). We even managed to have an evening nap before we woke up in a panic because I’d forgotten to take my evening meds and the my shoulder went… and cue me still being awake at 1am.

Still, there is a silver lining to all this. If nothing else, I’m getting plenty of quiet time to write and read. An up (and down) side of EDS is that the opiates have barely any impact on me, so where most people would be stoned out of their tree, I’m completely coherent aside from the vocabulary stolen by the Neurotonin. My NHS specialist was skeptical about this being part of EDS and put it down to opiate tolerance from long term usage. This doesn’t explain why my epidural was ineffective,  or why the usual local anesthesia does nothing. We’ll agree to disagree here.

During this quiet time, I’ve made contact with a number of local support groups and my quest to find a hydrotherapy pool continues. So far, I’ve found 2 pools but neither have a hoist, 5 canine pools, and 1 equine pool.
My local pool has a ducking stool, but is so cold that the last time we tried, I spent 4 hours shivering under a blanket with skin like ice after. Still, I shall not be defeated….

Testing 123

This weekend is my final chance to make utterly sure that I want to return to my GP and hand back the Tramadol. I’m also going to hand over these blog posts as they are more “at the time” accounts. (Like childbirth, after the event the more unpleasant bits are blanked out).

We decided to wait until Friday night to give tramadol another go at night after last week’s lack of sleep.

I took 100mg at 9.30pm alongside the usual gabapentin. On previous nights I have taken 60mg dihydrocodeine and 2 x 30mg/500mg co-codamol which takes away just enough pain to sleep from 11 ish until 3, then with another 60mg of dihydrocodeine I get through to the morning.

It’s 2.30am and I’ve not got to sleep yet. My right hip is throbbing and my right knee popped out as I turned over. There’s throbbing and pressure pain all down that leg. My lower spine & pelvis is burning, although the sciatica remains at bay. Higher up, my mud back aches as do my shoulders – my left shoulder is sharp and  stabbing as I move (from my collarbone being slightly out and won’t go back in easily). I have a headache that is more of a neck ache that is hitting the back of my head.

I’m on a definite 9 on the pain scale right now. I’m blogging both for reference and as a tool to remain calm. I’m using breathing techniques to control my breathing and remain in control of my pain.

2nd dose of 100mg tramadol taken at 2.40pm.

Ok, dose 2 had more effective. I slept on and off until 7 this time and woke up with my teeth clenched so hard that my jaw aches (it was already sore as it had popped out at school on Thursday ).
4 hours broken sleep is not enough though, and I shouldn’t need to be held like a small child just to get though the pain.

My leg has dulled now, my mid back pain has spread out to my ribs & my elbows have joined in with my shoulders. However, I think now having done this experiment under a number of conditions I can safely say it doesn’t work for me, but I’ve given it my best shot.

image

The Good, The Bad, and The Uncomfortable Truth

I have spent the past fortnight working myself into a panicked frenzy over the Occupational Therapy appointment. Truth be told, a few stories of social services threatening to take away kids planted seeds of terror that grew faster than bamboo. I hate that my kids have to help me out. At 9 & 11, they shouldn’t need to help their mum get dressed.

image

After my less than productive phonecall with social services, I was less than receptive. And despite that, we’d spent a full week cleaning (we meaning Mr Geek) because clearly cleaning the house will make you a better parent.

I’d made an effort to look like I was totally coping when she arrived, despite having been trashed at work and arriving home to find that Dad had collected TinyPants from school early with a fever.

image

Then I was utterly bowled over by her being totally supportive. She completely saw through me pretending to be fine (and even wrote down me wincing as my stomach cramped – some idiot had abandoned the meal replacement and tried to feel better at lunch by eating mac & cheese. There’s not a lot less fodmappy and I paid for that mistake for 9 whole bloated crampy hours).

image

She spoke to me like a real human – not pitying, but practical. And it took that one conversation to flick on the light bulb that if I got over myself and started using the chair in the house instead of doing the death shuffle on crutches, I might be a bit more independent.

It hadn’t occurred that not walking might give me the ability to make myself a drink, or help with the dishes, or just get to the loo without wanting to cry. Whilst the crutches are important because I want to retain some muscle strength, I’m buggering up my shoulders and wrists.

image

So why don’t you use the chair in the house? Well, mainly because of the doors (and my pride) – I can’t get my chair in the front door, or out the back door to the conservatory where Mr Geek and I have our living space (my parents live in the front room). And in one sentence, she solved it.

“OK,  we’ll order you 2 ramps and whilst we’re at it, a wedge so you can use the patio”.

image

Say what you like about having to wait for British health care, how many uninsured Americans would just be given house adaptations to help them feel more normal?

image

I’m not a great talker one to one and get very nervous, but she just knew her stuff. It was one of the first non-specialist appointments where I didn’t need to explain EDS. She’d already spent time looking it up (whoa). She was just great, and even offered a full copy of her report so I could add it to my PIP evidence.

It may take a while to sort out the ramps, but I’m not sure I’m totally ready to use the chair at home. I can see why it would help, but it’s a bit scary. I may try the manual one inside for a while just to get used to doors and stuff. Hey, it may let me stay up for a bit longer in the evening rather than going to bed at the same time as the kids!

image

This all actually happened yesterday but I was too tired and in pain to write. I’m coasting on my painkillers which just aren’t cutting it for working full time. I’m struggling to find something actually effective and it’s a long old road with the GP to find the right one. For now I’m sticking with combining dihyrocodeine and co-codamol as a cocktail with gabapentin and the other non-pain bits whilst I wait to see the GP next week to return the tramadol which was about as effective as a tic tac. I could see them sooner, but work is getting in the way (me with parents evening tomorrow & Mr Geek with working in London on Friday ), so I’m going to just have to hang on in there for a bit longer. I’ve kept it pretty much under control up to now, but today I nearly cracked.

image

It’s hard to describe the pain, but it’s similar to when I was an idiot on rollerskates some yars back and fell, promptly putting my arms out straight which on impact with the floor dislocated my elbow, fracturing it on the way back in. That sort of gnawing ache that makes you feel nauseous. Now apply that to multiple joints and other bits you can’t quite identify and you’ve got how it feels for me.

There are more and more nights where I sit up randomly rubbing joints or pushing them back, talking myself round that I can get through another day at work. Tonight is particularly hard. I’m tired. Proper tired. And yet in too much pain to sleep (hence blogfest) or remain still because twitching and twisting seems to help or at least give the impression of crawling out of my body. By Thursday I’m generally a mess anyway, but tomorrow holds a 13 hour day of teaching, then meeting, then parents evening. What I want is to curl up and stay in bed until the worst of this wave passes. What I will do is grit my teeth, slap a smile on and get on with it.

My favourite phrase is “this too shall pass”, except it’s not passing despite handfuls of opiates, and putting on a brave face is getting really hard.

image

It’s 4am, it’s dark, it’s time to play Name That Pain!

Sod it. If we have to go through this again, let’s make it a game show.

image

What’s behind door number 1?

This is the pain that woke you up through the painkillers. It’s sharp,  it’s yellow, it’s because you ate too much broccoli. ….  it’s your intestines!

Let’s see what you could’ve chosen behind door number 2.

This could be from typing or pushing your chair. They’re sore, they’re stiff, they’re swollen,….. it’s your fingers!  (But only on the right so type with your left)

What about door number 3?

You coughed too hard last night & now it pokes you when you breath. It’s sharp, it’s red, it’s a bit disconcerting. It’s your rib!

Now let’s take a look at the conveyor belt of “the usual aches”. Actually, you know what? This game sucks. I’m changing channels.