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?

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[Insert Witty Title Here]

It’s been a funny old day facilitated by a lot of painkillers. It’s been a bloody long one too. A total of 13 hours from leaving for work to returning home. That might not be much to some, but 13 solid hours in the wheelchair with no chance to transfer, or stretch out, or in fact have a nap after a tosh nights sleep was all a bit much.

I was greeted by a colleague today who goes out of his way to help me navigate the doors at work each morning. Not out of pity, but because he gets that it’s just hard opening doors and he misses the sense of community from his home country that is lacking in the UK. I enjoy our morning chats and I find his very honest love for people infectious. I’m a grumpy arsehole in the morning,  but he brightens my day by leaping out of his classroom to hold open a few doors just for me.

This morning he asked me how I stay so cheerful and positive. He really meant it. I did a presentation at the start of the year to the whole school faculty and apparently I was genuinely passionate. I do smile. I do ask how people are. I do laugh off the crappy days. It worried me that I seem so genuinely positive. Have I really got that good at faking it?

Of course I’m not going to tell you I’m in agony and my pelvis is burning. Instead put on a big smile and say “I’m fine! How are you?” Or make some stupid quip about having all 4 limbs.

Of course I won’t tell you about spending 20 minutes this morning layering on special concealer, foundation,  and powder to hide the eye bags. I do appreciate you saying how well I look though as it validates my make up skills.

Edit: before and after. Eek!
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Of course I’m going to shrug and say it could be worse, or there’s nothing I can do so why worry? These lines are so well versed that even if believe them some days. And actually only a couple of people get away with the following up of “and how are you actually doing?”. Mrs G, Mr Geek & Mr Gypsytree get honest answers. They are the glue that holds the bits of my mind together. Mrs Gypsytree aka Sherlock gets a special version where I don’t have to say much.*

How do I stay so positive?  Easy. I fake it. And apparently I deserve a bloody Oscar.

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The reality is that I got home today after a 12 hour stint at school + an hour of travelling in so much pain I found it hard to speak. I hit tired at lunchtime and pushed through tired into manic, then into plain weird where I got cross with Mr Geek for chewing to loudly near me, then finally rock bottom where I just cried buckets because I typed the Gypsytrees’ collective names. Just to help, I now can’t sleep as my legs are restless and ALL the painkillers aren’t helping my extremities or the headache that’s creeping up the back of my neck.

A huge part of that reality is being scared that if I rage about being in pain and physically useless all the time I’ll get boring and that stuck record will get old and eventually be left alone. So instead I smile as if my life depends on it. Because to a certain extent it does.

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On a much funnier note, a student at school went joy…err..hopping on my emergency crutches that I keep in my 1st floor classroom today. In his defense, he hadn’t considered why they are there, nor what would happen if there was a fire and my chair failed. Equally in his defense, with hindsight it’s quite funny watching someone describe a TWOC offense (taking without consent – which is usually reserved for vehicles) when referring to crutches. How far did he think he would get? We’re they going somewhere?  Why would you do that? Is there a crutch black market? The teenage boy brain baffles me. The hardest part : keeping a straight face.

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* Note to self: It’s OK to miss them. It’s not ok to get runny mascara over the Marvel Duvet cover. Captain America now looks like he’s been down the mines.

It’s Happening & We Need Your Help!

The last week has been a bit crazy, but it looks like we climbed the ladder of this app idea and instead of slinking back down like scaredy cats, we’ve thrown ourselves down the deathslide of startup business and friction burns are in the not to distant future!

But we need a bit of help from you lovely people….

I know surveys are boring, but if you have a few minutes could you answer a few questions to help us get our heads around the kinds of things you guys need, or share this, or tweet a link to the form for other chronic illness people out there?

https://docs.google.com/forms/d/1QMIsaZHbK6ysVtMAcCSy5sfjqAsNVLQ4lGVDqrFNBqQ/viewform

Or use some other kind of social media that I’m way too old and boring to understand? Xxx

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As always, Nice to have you here.

The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

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I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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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.

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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!

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

Piss Off Pain, I’m Busy.

There are lots of ways to make it through a busy time (like the Christmas Holidays) when you’re in chronic pain. The following are my main tips that I’ve been passed or have learnt the hard way. With a little luck, these may get us to the end of the year relatively unscathed…

Take your regular pain killers regularly

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That might sound like a no brainer, but so many of us try to reduce it down and only take pills when we “need” them when actually what we are doing is putting ourselves in a position where we have to fight much worse pain in the end! If you take your standard painkillers regularly, you create a base level of pain, then have a backup for anything that gets through your first line of defense. Your ‘breakthrough’ pain will be more manageable if you’re already handling the regular pain.
Right now I am dealing with my breakthrough pain with a strategy of stretching, then NSAIDS (like ibroprofen or naproxen), then massage if Mr Geek is here & available or TENs, then oramorph as a last resort,  but because the round the clock stuff is actually around the clock, I only need oramorph one or twice each day. But also because of the tactics below…

Don’t stand if you can sit down, don’t sit down if you can lie down.

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Welcome to having spoons. I could technically crutch shuffle about the house, but it’s slow, it’s painful, and each time I do another joint pops out. Instead I use the crutches when I’m visiting people I can’t visit in the wheelchair, or as a daily exercise routine for my legs & arms. I couldn’t do a day of shuffling – I can barely manage a few minutes before I need a sit down, if not a nap. So yes, whilst I have legs that do sort of function, albeit in a weird wobbly painful way, I use a wheelchair to preserve my spoons, prevent pain, and prevent more injuries.

Alternatives could be keeping a chair in the kitchen to sit down if you’re on vegetable duty, or using a walker or folded walking sticks both of which have built in chairs. When I get back to walking, and as WordPress is my witness, so help me I will, I’m totally going to get this funky seat stick!

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(I found this at Walking Sticks Online – because why mess about when you name your shop! – usual statement, I’m not being paid to advertise – I just thought it was cool so shared the link)

If you have people over, encourage them to feel completely at home by sitting down or even making you tea! They’ll probably be relieved that they can help and it’s nice having friends who just rock up and make you tea.

You are not being lazy. You are prolonging your ability to participate.

TENS isn’t just for pregnant women

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Another trick for breakthrough pain that is widely used by physiotherapists and drug free! I bought my first tens unit way back when my back first started to wave the white flag in 2007. I wore it discreetly under my clothes whilst attempting to simultaneously breast feed and study for a degree (doable, but not recommended).

The way that TENS works is the electrical impulses block the pain receptors from the site of the pain travelling to the brain and replace them with pleasure signals. It’s the same theory behind rubbing something better – the science says that actually you can rub it better! (And you won’t go blind. Fnar fnar). This is also why we crave massage when our muscles are sore.

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There are a number of different settings which work on different types of pain and my current tens unit allows me to choose between 8 different styles and vary the intensity (it’s a few years old now – the newer ones are super whizzy!). There are a number of manufacturers who are now also selling whole joint garments which use conductive thread to spread the pulses over wider areas like a whole hand, knee, or elbow  (sign me up!).

If you do get a tens machine for yourself, making sure that it has the universal pad connections will save you in the long run in terms of buying new pads, both from the cost of generic tens pads which are currently about £5 for 4 pads and also the ability to plug in different pads such as the larger butterfly pads for back / hip pain.

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In proper layman’s terms, the buzzy settings are good for nerve pain as they replace the pain signal sent from the bit that hurts with a similar pleasure signal that is produced by massage. This gets the brain to produce dopamine (the hormone that makes you feel all good and floaty post orgasm) which also happens to be a natural painkiller. Alternatively, the thumpy setting that makes your muscle twitch, is good for muscular pain or excellent over muscle knots. This acts like the deepest deep tissue massage you’ve ever had because the muscles are massaging themselves! I’ve had a fair bit of success using this setting on mild, but stubborn subluxations to get the muscles to squeeze the joint back in.
My personal preference is to use a setting which regularly cycles between each in order to stop my body from acclimatising to the setting.

Have a cuddle

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When TinyPants was born, we were encouraged to use kangaroo care where the teeny tiny prem baby is stripped down to a nappy and placed into the mother’s shirt (no bra) to create skin to skin contact. It encourages breastfeeding, a feeling of safety, and reduces stress for both the baby and mum… Unless you go sans nappy & your baby poops all over your boobs… Yeah. Don’t do that.

Just as it reduces stress in teeny tiny babies, skin to skin cuddles do the same for adults.

This can pose some problems when chronic pain is involved. Full body cuddles may be out of the question when you’re in pain. If Mr Geek leans on me I’m likely to yelp which does nothing to relax me, or him for that matter. But, I can lay on his chest whilst I randomly throw the covers off and on as my body temperature fluctuates. The important bit to remember is that it is skin contact – being nude will actually help (even if it causes you both to be utterly frustrated when pain is preventing rodent like fornication – that’s a whole other post about how sex can help with pain!). If even this isn’t working, simply laying close with him stroking my hair is the most insanely relaxing experience. Again, the dopamine that wanted physical contact with another person produces, limits / reduces pain levels. If you want to get all anthropological about it, look at the reasons why apes groom each other – it’s not just to get rid of lice,  but to form family bonds and forge relationships. It’s another example of pleasure receptors in the brain being more powerful than pain receptors.

I’m A Genie In A Bottle?

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Mr Geek spends an unspeakable amount of time massaging my various extremities and my back. I’ve tried all manner of massage pads & chairs & shiatsu rolling devices, but they are never any match for human hands that can feel the muscles & bones that refuse to conform to the standard anatomy drawings.

Over the past 12 years, he’s got to know where all the knotty bits are, which bits may clunk, how to use just enough oil to work a knot out (or at least make it small enough to reduce that blinding migraine headache), and which bits to never touch unless he wishes to spend the next few hours feeding me megadrugs. There is no massage therapist on the planet that can replicate the pain relief he can provide. Without his pretty much daily homage to RSI, I’d be in more pain than I can tolerate.

If you don’t have a Geek to poke your sore bits, and if you do have a financial budget for maintaining your mobility, massage can be a real winner in terms of pain reduction combined with physio. Make sure that you book with someone who really understands your condition(s) and if something hurts, ask them to stop! The massage technique that comes up time and again on the EDS forums is trigger points massage as we are usually prone to knots. If you happen to be local to London (I’m not really), then there are therapists at The London Hypermobility Unit who specialise in this. The downside is the longevity means that massage is something that, like laundry is a never ending cycle.

At home, more simple things like hot stone massage can be really effective on chronic pain (avoid these in a fibro flare if your skin can’t take heat), or sticking a deep tissue massage video on YouTube and following their lead.

I hoped some of the tips I’m picking up are useful. What is your top tip for tackling / managing the breakthrough pain?