Teacher in a Wheelchair series : The Successful Cyborg – tips 1 – 5

I’ve lost count of how many times people have asked me how I appear to just carry on despite rapidly falling to pieces. Just as often I look confused at them & say “err I just do. It’s nothing special.”.  Looking at it objectively, actually my ability to hold down a full time job is thanks to a million little tricks and adjustments. This series of blogs is all about unpicking those adjustments & sharing them.

For those who don’t know, I have Ehlers Danlos Syndrome – a genetic condition which affects connective tissues throughout my body making them stretchier than they should be. For me this meant undiagnosed joint pain, weird injuries, & enormous anxiety as a child; later this became chronic pain in my back & gastric issues; finally (and this isn’t my final form) in my mid 30s I dislocate daily, have dysautonomia, intense fatigue, & the joys of adrenal imbalance making me easily “stressy” and unable to sleep at appropriate times.

Life could very easily get very dark; I could easily dwell on the potential of overdoing it & rupturing an important organ; it’s not unusual to do the 2am game of “which body part hurts the most?” – tonight, come on down thoracic vertebrae! We have a winner! ; I am human & the odd week long pity party for one is allowed (and frankly, quite health behaviour when you are faced with similar pain to a broken bone all the time & for the rest of your life).

I am in no place to judge others, but first me making it into work helps. No matter how much pain I’m in, I’m there to make an impact on those kids lives which leads to trick number 1:

1. Distraction 

Of course there are times when I’m in so much pain I can’t think.or verbalise. But for daily ‘my normal’ levels of pain being busy let’s me push through more. Handing out house points in exchange for homework is my current favourite- I’m focused on the positive & lists.

2. My Mug & Staying Hydrated

I went along to one of the most useless OT groups ever to be run recently. One suggestion first drinking was to kit use dainty china cups for your tea, but instead use a mug. I’ve never used a china teacup! 

I need to drink a good 2 – 3 litres per day to remain conscious, and I need to do this in a little & often way. Also, I hate drinking water. My solution: green, jasmine, or earl grey tea (weak & no milk) in a constant supply via my thermos mug.

Between 8am – 5pm while I’m at work, I’ll get through 4-5 of these by carrying it around with me & just topping up the hot water until I’m drinking vaguely tea flavoured water. The Thermos makes it stay warm for longer & the handle is big enough to put 4 fingers through  (this takes the strain off your smaller joints). But the biggest winner for me is the lid : it’s a suction lid, so no screwing! & the middle twists over to reveal a sippy bit which reduces spills without being obvious that I’m using a sippy cup!

3. Morning Rituals

Our mornings consist of getting me, my mum, & Mr Geek to work and both kids to school. This is a feat of epic proportions only achievable because my Dad takes the TinyPants school run (now Beanpole is at High school, Mr Geek is slowly letting her get used to getting herself there by driving her to school).

Mr Geek wakes me before 6am by putting the TV on in our room & greeting me with coffee or squash and painkillers. Then he helps me dress. After this, I have 20 mins to go through my makeup ritual. This quiet time gives me chance to let the painkillers work, or just come to without being overwhelmed.

I could have 30 minutes extra sleep, or I could disguise my exhausted face using baskets full of make up & moisturiser. This is my war paint. My axe is sharper when you can’t see how weak I am.

4. Hygiene Hacks 

You probably noticed that my morning routine didn’t include a shower. I didn’t just forget to include it, if I attempted to shower each morning, I wouldn’t have the energy to get to work. Here, a combination of baby wipes, exfoliating face wipes & a wet flannel helps freshen me up first the day. These are the very real choices we have to make to hold it together. Of course I would prefer to wash properly, but needs must, and exfoliating wipes are remarkably effective for washing face & underarms each morning.

The Nivea 3 in 1 wipes are my current favourite and smell nice too. A much cheaper (and just as effective) version is from Primary, although I’m not keen on thinking about the chemicals added to the latter. I keep my cheaper wipes in my handbag in case my stuffy classroom gets too much and I need to freshen up.

For my hair, I use a Tangle Teaser instead of a brush as I can grip it with my whole hand. With over a foot chopped off of my hair it’s much easier to handle & keeping it curly means I can miss a bit of brushing & squirt it with water / mousse and no one will know! If I want it to look styled, I still need Mr Geek’s help.


5. Painkillers are part of your toolkit

There’s a lot of debate online about opiate use & whether we’re all just junkies. Much of the debate is conducted without asking those who take them if they actually make their quality of life better. For a perfect example, watch this weekends MedX talk from HurtBlogger:


I would’ve preferred to link to her being subsequently patronised & talked over by a panel of doctors who were pushing their anti-opiate agenda, one of which suggested taking a less effective drug because a bit more pain is ok. No. It isn’t.

For me, opiates reduce my daily pain more than any other drug (oooh and I’ve tried them). They are part of my toolkit to create a manageable baseline & address and breakthrough before I hit meltdown.

Without them in my toolkit to be used sensibly*, my quality of life would be appalling. My risk of self medicating, very high. My mental health, very poor.
* sensibly in this case means at the minimum dose to achieve a suitable reduction in pain. There is no expectation of no pain, instead a tolerable reduction.

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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?