Teacher in a Wheelchair Series – No 2 – Why Bother?

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. Number 1 shared some tricks on making it through the day in one piece, or at least in as few separate pieces as possible. This week, I’m focusing on mental health.

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). At my PIP interview the assessor took Mr Geek aside and said bluntly “keep.an eye on her, that brave face is going to slip soon & she will crash and burn”. PIP or Personal Independence Payment is the UK disibility benefit to enable us to pay for care & mobility aids. It has a very bad press & the process tested my mental health to the absolute limit. I lucked out with my assessor who was kind & fair and was so jaded by the system that he just asked me straight rather than trying to trip me up. I thought he was being dramatic when he said to look out for my mental health. He wasn’t. 

So here’s some pieces of advice on mental health in the workplace when you have chronic pain. 

1. Every Little Helps

It’s very easy to feel like Sisyphus forever rolling that boulder up a hill & getting nowhere. As teachers, even after years, we have this idea in our heads that we can create a community of well behaved & engaged kids. That ideal will never go.

When I first used my wheelchair at school, I was scared that it would impact on my authority and the kids wouldn’t behave. Quite the opposite. It’s allowed me to be softer with them because I’m in less pain, so have more patience, and they copy my more happy style.

It’s not all sunshine & rainbows though. This week I’ve encountered all sorts and it’s worn me down. We’ve had uniform “adjustments”, monosyllabic grunting  (that drives me up the wall), swearing, use of the words “retard” “gender bender” “gay” “mong” (can you say detention with an essay researching the history of why that is offensive?), graffiti, large items thrown through windows, parents complaining that I’m horrible. I’m painting an awful picture, but this is not business as usual. 

I work in an outstanding school. Not because Ofsted say so, but because it’s a place I want to go to. I gladly increase my pain levels to spend time with the kids & my colleagues. And you can bet any amount of money that each of those issues will be dealt with in a style similar to Thor’s Hammer.

Yes, I’m sick to the back teeth of kids talking to me like something on their shoe, but what they don’t realise is that I’m grittier than them. They will pass this course if I have to drag them kicking & screaming. I secretly like them. Even when they’re making my life hellish.

And that’s my secret weapon. They don’t need to like me, they need to know I have their best interests at heart. They initially think I’m evil. I set all this homework and demand proof that they’ve revised. Then had the audacity to set a test for year 11 on Tuesday. They got their results today & the majority did wonderfully. I gave them proof that their hard work paid off. I won.

2. It’s not personal

Meet the teenager who greets you with “let me sing you the song of my people: that teacher hates me”. The song translates to a number of things:

  • “that teacher set me work that I don’t immediately understand and they won’t do it for me”
  • “That teacher won’t let me sit with my friends and chat”
  • “That teacher doesn’t understand why I’m struggling in class”


In the 3rd instance, yes, we’re in the wrong. And we are not infallible and do miss things. But when those complaints come in because you set high expectations & push for independent thought  (and they will), it’s not personal. Not for you as the teacher. It’s hard for children (and nd adults) to adjust from being spoon-fed answers to being investigators. It’s natural to dislike the person who is pushing you out of your comfort zone. I hated my programming teacher. As he strode around the classroom proclaiming we were all useless & a waste of his precious time so no he wouldn’t lower himself to giving us the answer! We resolved to make him look stupid by proving him wrong and aceing the module. We were played. Looking back, he was one of the best teachers I’ve ever had.

I’m not suggesting his style of teaching. But be firm. Follow your behaviour guidelines. Write home. Know that you are the target for their fear of failure & self doubt.  And by knowing that, you also know it’s not as personal as there words suggest.

3. Cake Monday

Make time for your colleagues. They are your support network. This year is arrived on our first day back with a home baked black forest cake and declared Monday breaktimes “Cake Monday” where we all stop, Drink tea, eat cake, and most importantly talk about us (not work, but what’s going on with our lives). That 20 minutes each week allows us to touch base & gauge if anyone is wobbly. Case in point being my wobble over going to hospital in October – I talked about my fears & whilst they can’t fix it, they are keeping it low key with questions about it banned unless I bring it up.

4. Mark your work!

Err how is this good for mental health exactly? Well, set a routine with books. Collect then in each week & leave a minimum of one positive comment in there. Where they need to improve, ask a question instead of telling them.

When you write down positive things about your class, you feel more positive towards them. This is especially helpful for new classes, or ones you find challenging.

My favourite right now is to buy packs of DC & Marvel stickers which go on the cover of their books if they show effort or grit or self control. These also equate to housepoints, but they love my silly comments of “super effort” or my personal favourite “incredible homework ” accompanied by a sticker of the hulk.

4. Ask for help

Do as I say, not what I do. I am so bad at this & am paying the price. My job this weekend whilst away is to put together a list of tasks that are causing me pain, or issues at work.the reason being so I can propose a change in my support from Access to Work. I’ve reached a stage where I’m aware that I’m overstretching my physical capabilities and need a support worker in some capacity. Travel in a converted van with my wheelchair strapped down is painful & noisy to the point of tinnitus.

As part of this, I used an accelerometer on my phone to measure some of the bumps over my 30 minute journey into work. These show a reading in m/s2 (meters per second squared)

Remembering that travelling in a wheelchair means you are sat bold upright thus placing the ptessure of any bumps directly onto the spine: at it’s highest reading, this was a 3g pressure downwards. That’s on a par with a roller coaster. This could explain why I start each morning with tea & painkillers.

This kind of data will help me to legitimately ask for help & not be seen as moaning. It’s unlikely that’s they would, but I’m my head I’m biting the hand that feeds me.

So, a bit of a long rambley post which I guess is fitting for looking after your mental health when you’re dealing with life & chronic pain. 

Until next time xx

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.

My September 2016 Glossybox! All that glitters

Spending a large percentage of your life feeling like crap requires things to make you feel more human. In my world, this includes my monthly surprise in box form.

Note: I am getting no payment or freebies for this review. This is purely a fun thing for me to do when my box arrives! As part of my account, I am given a code for you to get 20% off a box by following this link (this does earn me points towards more boxes)

This is my third month of receiving a Glossybox. A surprise box of goodies that costs me £13.50 (because I pay each month – it’s cheaper if you buy a subscription). July was brilliant, August’s box was a little dissapointing aside from a brilliant eyeshadow pallette, but September has returned to redeem itself.

The box is usually pink, but this month is red to match it being the Red Magazine choice box.

The items in my box included a full size nail top coat, lip stain pen, & eyeliner pen. There was also a sample mascara, a face mask, & a gel face mask. If you wanted to feel pampered, this is your box.

The first big item was actually gifted to my mum. She’s growing her nails back after having acrylic nails removed and is really conscious that her nails stay attractive. I, on the other hand embrace my eccentric academic role with short, unpainted nails which are usually decorated with ink stains. As a full size item, this will last her ages and she tried it out straight away. 

Would I buy this? Not for me, but mum loves it, so it’s on her list!

RRP: £7.99

Next up was the smokey eye pen from Rodial. As an aging goth, I’ve had a love / love relationship with smokey eyes. In my current state of looking a bit like the corpse bride, they have the added bonus of fooling people into thinking you intended to look like this. Since the 90s (yes, I’m that old), a kohl pencil & eye shadow have been my staple eye kit, but this plays the part of pencil without the stabbed in the eye bit & stays smudged without fading. I’m planning on testing this to destruction during parents evenings as I attempt to pass as a professional human from 8am classes through to 8pm end of parent chatter… 

Would I buy this? Hell yes I would! Even at this price.

RRP: £17.00

The final full size product was the pink tint Lip Marker from GOSH. Yes it is a Lip stain. No it is not a highlighter.

As weird as it felt using what appeared to be a chunky felt tip on my lips, this stuff is lovely! The colour is very pale and just left a hint of pink whilst leaving a nice moisture & gorgeous cherry smell. (It tastes nice too… not to eat, but anything you put on your lips will be tasted). I’m not a huge fan of lipstick, so the tint this created was perfect for me.

Would I buy it again? Yes. I’m already looking for the other shades!

RRP: £5.00

Next came the samples. The first one is a mascara from Too Faced which boldly claims it’s Better Than Sex. It’s a sort of half sized sample, but still with the b rush that helps shape lashes. I’ll admit that mascara is the one thing I can’t go without makeup-wise, but whoever declared this better than night time naughties needs to get laid because they seem to have forgotten where a jolly good screaming orgasm comes in the order of things. (For reference, not below a rather nice mascara that doesn’t run down your face even though it’s the hottest day of the year & you’re in a classroom with 30 shouts kids and no aircon).

Would I buy this? Maybe. I’m still very taken with the mascara from July’s box.

RRP:  £19.00

Finally, two face masks were included in my box this month. The first being a Body shop sample & the second a face covering that made me look vaguely like a serial killer. This claims to moisturise your face for up to 5 days through the power of Korean technology. 

As someone who uses exfoliating washes & masks with salicylic acid in anger (with frankly super results on pores & hormonal breakouts), I was keen to find out what the hype was all about here. I’m saving this one as a Sunday night treat in the bath before going back to work. I’m not in desperate need of deep moisturising as the one perk to EDS and it’s defective collagen is lovely soft skin… that tears, and takes ages to heal. Maybe I do need that mask after all!

Would I buy it? I’m not sure yet. But may even for an occasional treat.

RRP: £7.99 per mask

Overall, that was a rather exciting little package and certainly stuffed with enough to keep the September back to school blues at bay. And if they do raise their ugly head, I shall just hide behind my smokey eyes!

The Glossybox website is here & let’s you order a 1 – 12 months subscription. Or click here to be referred by me & get 20% off of your order.

Note: by clicking any of my Glossybox links, you get 20% off your first order & I will earn glossy dots which I can put towards free boxes. As above, these are my honest & done for fun reviews & I am not paid for them.

Of Corset Will Help!

After much deliberation & a weekend of new pain flares in my back, we made the decision to extract my corsets from the loft & purchase a new steel boned one.

I can hear the feminists heads exploding from here. Stop it. This is not about looking sexy & crushing my ribcage. In my early 20s, yes, it was about tight-lacing and feeling like a victorian lady of loose morals. But with constriction came the benefit of reduced back & rib pain, something which spiralled out of control last year & again gently upped the anti over this summer.

There are a number of actual medical benefits to those of us with EDS in wearing a well fitting corset (standard disclaimer: I am not a medical expert. This is personal experience & research):

  • Back support that’s attractive
  • Rib support for when they wobble
  • Retained good posture for longer
  • Reduced pain from discs
  • Enforced posture even when muscles relax 

There are a number of styles available. My preference being under bust waist only, or high back under bust which provides more shoulder support but can be uncomfortable for long periods of time. Bones are another thing to be aware of – avoid plastic boning like the plague! It’s for decoration only and the minute you pull on those laces, the bones will poke you in the sides and more importantly give no support. Solid steel bones are available in heavy duty tightlacing corsets where much like the metal wrist & thumb splints we’re used to, the metal can be bent to our exact shape. These provide ultimate support, but don’t expect to be able to move (or breathe) much more than Scarlet O’Hara. These solid steel bones mimic the old whalebone corsets that got such a bad press.

The best of the bunch is the steel ring (spiral) boning which is flexible and provides support without sticking you or crushing anything internal or important!

Prices for a steel boned corset range from anywhere between £30 to several £100. A high back bespoke one is most definitely on my Christmas list, but for now I’m at the lower end of the price range with a simple steel boned waist trainer.

If I’m brutally honest with myself, despite hitting my mid-30s & being a size or two larger, I still see myself as the person here (who was wearing a tightlacer in this photo) with my multicoloured dreadlocks bathing in computer code.

I realised that I’d actually worn corsets on a number of occasions with the same benefits that I’m seeking now in the past. My most obvious was during my second pregnancy where my pelvis just fell apart & I was combining medical corsets & pelvic strapping to keep me upright from about 14 weeks. Clearly, this was the perfect time to get married, and at 20 weeks pregnant I hid the crutches from every photo and wore the slightly adjusted dress and discretely spent a whole lot of time sat down. That corset stayed holding me together for the next 12 weeks until my waters suddenly broke & TinyPants made her unexpected exit. 

With made to measure corsets way out of our price range while I was still at university & with 2 tiny children, I went hell for leather with the sewing machine and created a few of my own steel boned tightlace corsets for post partum me. We had no clue about the EDS at that time, but knew my pelvis was doing some form of Mexican wave and I’d slipped several discs. Even as fun costumes (I’m Anne Boleyn post beheading here – Halloween party 2008ish), I made sure steel bones were included.

And now? Sat in either of my wheelchairs, I have a tendency to slouch, or if sit up straight I overarch my back which is painful at the best of times, but combined with a thoracic curve to the right and no spacial awareness, nerves are pinched and damaged. I’d love to look pretty in it, but foremost I want that prod to make me maintain the posture I need to hold to minimise further damage? Sitting all day is uncomfortable at best, torturous at worst. After an hour I’m usually twisting & stretching : I leave for work at 7.30am and am usually home around 6pm. This corset is going to have a tough job on its hands.

I shall keep you posted.

Accessible Fashion – Lagenlook 

Over the past year I’ve been struggling with clothes on a number of levels. My mission has been to find clothes that meet ALL of the following:

  1. Are stylish & individual, but not “fashionable” (I’m 36 fgs, my teenage clothes are now “retro”)
  2. I can get on & off without dislocating & with minimal help
  3. Are comfortable EVEN when my joints ache, my belly bloats by several inches for no good reason, I’m sat in my wheelchair all day, I’m sitting awkwardly because of my weird bendy back
  4. I can get out of to go to the loo.by myself (big, important consideration even if this is way TMI)
  5. Won’t tangle in my wheelchair 
  6. Won’t be too hot & make me Tachy
  7. Won’t be too cold & turn me to stone
  8. Are considered modest enough for work
  9. Aren’t frumpy
  10. Won’t fuel my “I’m fat” thoughts

So, you know, I’m Easy.

But over the past few weeks, I’ve found a style that rather meets all of this. Lagenlook is a German creation which literally means layered look. It is a style of dressing that flatters almost all figures and sticks two big fingers up at the perfect body type. That rather suits me seeing as the body I once adorned with home sewn flared dungarees so enormous that I used to trip over the hems seems to have spread out, twisted, & broken. I digress.

The look can be adjusted to suit whatever your particular style is (for me, I’m more the 2nd lady in from the left without the standing, and some extra padding). In my case my colour choices are black, grey, natural greens, and the occasional royal blue for funsies.

So today, Mr Geek took me & the kids over to Brighton to address the lack of uniform shopping for the kids & identify some items to stop me making a face every time he gets me dressed & bemoaning my lack of clothes that don’t either hurt my stomach or look frumpy.

Each morning I’m greeted with “what do you want to wear?”, and without fail the answer has been “something comfortable”. This is going to suck when I go back to work and I have to dress in smart & professional clothing. This is great in theory, but when you’re battling a body that has wild temperature fluctuations & inflates because you smelt a bread roll, a pencil skirt isn’t practical.

Lagenlook solves the looking like a human with some form of style, and because of the layers I can add or remove layers as and when needed. The majority of the bits I bought allow me to wear leggings or linen trousers underneath which is where I come a little bit unstuck – our dress code states no leggings – I can’t successfully undo trousers & get to the loo by myself (apart from my linen trousers which are elasticated which breaks my heart, but hey). I’m hoping if they are worn as a type of completely opaque tights, I can get away with it.

I think I’d always planned this Bonham Carter-esq look as my midlife crisis style of choice anyway & looking through my pre-shopping wardrobe there’s already a few petticoats, DMs, and cardigans just waiting to be layered up. And I guess 36 is an ok age to have a midlife existential crisis. I’d always planned to have to go and “find myself” in Tibet where I would meditate and plan my sky burial.

Instead, I am finding peace through painkillers and the acquisition of comfortable clothes in Primark. I’m a terrible hippy. I will however happily settle for expressing my repressed rebellion through slightly odd clothing & my trademark super red hair.

Pleasure & Pain

This is where you see the NSFW disclosure and start to read on sneakily, except this is USFW (utterly safe for work). 

As you do when chronic pain becomes just part of everyday life, I started to Google the medical trials for some of the treatments suggested to deal with my pain levels. One of my go to solutions when it gets too much is my TENS machine. Frankly there are times when I just don’t have enough pads & a full body suit would be a better solution, but as breakthrough methods go, it’s short term effectiveness wins my vote. But why?

There is little evidence to support the use of TENS for chronic pain relief, and yet every physio & pain management professional I have seen starts with this as a non-medical option. I’m generally a skeptic when it comes to things that haven’t been clinically proven to work, but  desperate times…

This is the machine I bought. Thanks to a PIP payment, I was able to upgrade my old 1 setting machine to a duel channel machine with multiple settings & the ability to set my own.This is in no way a recommendation of the device itself, just an image of my own machine for context.

Breakthrough Pain

This can hit me & hit me hard. When my SI slips, or a rib moves, or another spinal disc bulges for no good reason, I get Mr Geek to slap the pads on & I electrocute myself for an hour or so. In these cases I use a TENS setting which in theory uses “gate theory” to block put the pain signals – the idea here is that the electrical stimulation of the nerves blocks the pain signals to the brain. Tbh, it’s similar to massage for me. When any of these areas pop the surrounding muscles often go into spasm and cause more pain, the massaging effect of the tens machine gives the muscles no choice but to contract rhythmically creating a massage sensation & also preventing them from doing their own thing. The pain relief only lasts as long as the machine is on & the intensity feels less over time.

Myofascial Pain (muscle knots)

EDS is bloody evil. Not content with messing up my joints, because my muscles are taking over the job of my tendons & ligaments and because they are constantly overworked holding my skeleton together (or not), my larger muscles are riddled with knots. These are tiny (anything from a grain of rice to a marble) areas of muscle that ate stuck in a contracted state. Strangely, these often bother me more than a joint dislocation as they irritate & cause headaches, or twingy irritating burning pain.  No one really understands why they are there, but they do cause extra pain which refers to the areas around them (eg. A knot in my shoulder may cause pain down my arm). 

There are a number of ideas of how to get rid of these and growing evidence to prove that each method has its merits. The 1st is massage, but rather than Swedish gentle massage, this is pushing on the knot with some considerable force until it releases. Poor Mr Geek has spent hours upon hours attacking the major lumps in my trapezium  (shoulder blades) which bear the brunt of force holding my shoulders together and my head up. A good massage therapist can work out knots, but within 24 hours mine can return so the cost would be prohibitive!

Secondly is getting the muscle stimulated. Activating the muscles my lifting weights is a good example, but a terrible idea for someone with unstable joints! So along comes the TENS machine with its EMS setting (electrical muscle stimulation). With the pads placed correctly, this makes the muscle twitch in a rather off putting manner, but through contraction & release, somehow confuses some of the knots into relaxing and joining the normal working muscle. If you can get through the weird twitching, this is a simple option that also tones the muscle.

The final solution I’ve yet to try, but am fast edging towards is myofascial release therapy which is rather uncharted territory. The basic premise is to insert a needle into the nodule (knot). Trials have shown that this process somehow forces the muscle area to stop contracting. This is done as either a standard acupuncture needle to just release, a set of acupuncture needles which are then attached to an electric current which adds the TENS element, or more clinically, a standard needle which administers a small dose of botox into the muscle which prevents the muscle from contracting for enough time to stop the knot reforming.

It may sound drastic, but the third option appeals to me from a logical standpoint. If I’m desperate enough to allow someone to stick needles into me (and I am), I don’t want the bloody things coming back within hours!

Have you tried TENS for pain relief? Or even had needles stuck into you in desperation? Did it help?

Almost Cut My Hair… Then I Did

Ever since I decided to write this blog I’ve been humming the Crosby, Steel, Nash, & Young song that my Dad used to play me as a kid… 


Actually, I did this a few weeks ago before we went away on holiday, but I wanted some time to get used to it before I blogged. 
As some of you know, I’ve spent a great deal of this year wearing headscarves (officially a tichel) to make light of my hair coming out in clumps at the start of the year. I kept it long despite the daily winding up of balls of hair & needing Mr Geek to wash it for me because 1. I couldn’t get my arms up to shampoo & 2. The weight of my wet hair needed me to support my head with my hands. I did this because, well, I gave long red hair. That’s who I am. Until I snapped.

My GP has now put me on an extraordinarily high dose of vitamin D, which I just don’t process and my hair has recovered in as much as my scalp is covered once more. It’s also had an impact on my energy levels & I’ve stopped falling asleep mid conversation for the most part (now, it really is because you bore me).

But I wanted to look “better”. No matter how funky I made my headscarves, being in a wheelchair, they just added to the “sick” look. So I marched my family into the hairdressers & whilst the kids were having their Pre-holiday trim, I asked them to lip off 1ft of hair from my head. I had a vague style in mind & handed her these two photos announcing that I wished to have a midlife crisis & hang about playing the ukulele.

She looked at me & asked if I was completely sure I wanted to cut such long hair & if my husband minded me having so much hair cut off. I opted for even shorter. In my mind, the end result would be the catalyst of me dropping the uptight image & Boho my way through the summer with potential ukulele based nudity.

The reality was close to my mental image even if it took a while to work out how to style it (I have natural ringlets- who knew!?)

From a practical point of view washing, brushing & styling is all infinitely easier with shorter hair and the front is long enough to still be clipped up out of my face.

From a deep down emotional point of view, this is another thing that EDS took away. I can’t manage with long hair anymore & gave in. I loved my hair & to a point also loved my scarves which I will continue to wear when I feel the need to cover  (I didn’t when we went out in Germany & surrounded by women in hijab, I rather wished I had covered some days as a safety blanket). I need to set about working on the new ‘short hair’ identity. It’s still red, but not as red (or pink, or green) as I’d like it to be, but give me time…
When I get back to work, I’ve set myself the mission to tame it into looking more like this:

For those of you who haven’t come across Fleabag, search it out on Amazon (or BBC3 if you’re in the UK). Her hair is amazing. Oh, and the show is tremendous too.

So there you have it – good hair news in that it’s healthy & returning thanks to hearty vit D doses, and other hair news in that my midlife / chronic illness crisis has left me shedding any high flying career ideas that may have once been top of my Maslow triangle,  instead, with holes appearing at the bottom of the hierarchy, I’m reverting back to by teens with a life goal of obtaining that dishevelled & slightly unwell, but still oddly sexy look a la Courteney Love, and a Palmer etc. and playing the ukulele naked somewhere. Now after 2 cesareans, emergency surgeries, & a penchant for Milka, no-one needs to see that!

Just for reference, I was prattling on about where I sit on Maslow’s Hierarchy of Needs – like the foundations of how to be a happy & fulfilled person – without the lower tiers, the higher tiers fail. Based upon this, where are we do you think?

Reduced mobility & Boho clothes are really very suited. There’s another blog right there. But for now, what was your biggest thing you “gave into” because of disability?