Why I Let My Daughter Dye Her Hair Pink (and blue and purple)

I’m riding the “bad parent” wave each time we go out this summer. TinyPants starts high school in September and at age 11 has asked for a number of things that I’ve agreed to despite parental tutting. Here’s why:

She’s always had a strong sense of identity and year 6 has contained some big knocks for her. Instead of the last year of primary school being a fanfare of goodbyes, she counted down the days until she could be rid of bitchy cliques & a head teacher that she openly hated (strong words, but she had big boots to fill & did little to endear herself), and then there were SATS.

Since September, everything was building up to these bloody exams. Art, music, creative writing, science – all the things that made TinyPants love school went by the wayside. Maths drills, spellings, & exam papers were the daily grind – after which there were hours of tearful homework.

“Do your best & we’ll be as proud as always” we kept telling her. In the end, she sat in pain for 4 solid days doing her best (she was allowed to get up frequently, but allowed no extra time. Fearful that she wouldn’t finish, she didn’t take breaks. By day 4, she had a roll of physio tape strapped to her). Previous end of year reports have been a joy to read with comments given across the curriculum; this year one page was given with a table highlighted in red for each of the maths & english exams – “did not achieve”. The pass mark is 100, in most she scored 98 & in one 94. No “how I enjoyed my year” comment, but a “how could I have improved in my exams”. In contrast, her sister has a high school report with gold stars for effort & all subjects treated equally.

I was furious. My baby has fought past being born so tiny that she lived in an incubator; she fought apnea; she worked so hard to read (something that didn’t come naturally); she has emotional intelligence to rival most adults; she is a young carer; she has mentally prepared herself to be in daily physical pain & smiles through it; she worked like stink to pass those exams and yet she was deemed insufficient by a margin of 2 marks. She didn’t see how close she was – she saw “failure”. The piece of my mind that I’d like to give Gove, Morgan, & Greening may leave me without a mind. This narrowing of the curriculum and constant testing is stamping out the creative sparks that we’ll need in years to come.

So she asked to rebel, much like getting a statement haircut after a big break up. Step 1 was pink hair and I agreed to dye it for the final day. Step 2 was leaving primary behind – I genuinely feared her going out in a blaze of verbal glory, but she took the high ground and walked out with her head high (mentally flipping the bird as she left). And that was that.

She’s using the summer to find herself & that includes strange hair colours. We’re watching a pre-highschool reinvention of herself & it’s fascinating. She’s ditched the little kid clothes for older, but sensible shirts & jeans. I’m watching me grow up from a distance, but with a lot more self-esteem! Yes, we’ll have to get busy with the Head & Shoulders to remove the colour before school starts (eye roll), but for these 6 weeks the girls are allowed to be their genuine selves, whoever that may be.

We’ve just got back from a week at Disneyland where she asked to ride ALL of the rollercoasters on hoiday. I feel sick letting her put her body through that kind of strain – she’s already in pain most days & her back is a big culprit. Ibuprofen, TENS, & physio tape already feature quite regularly. Now, I could insist that she protect her joints at all costs, but shit, what right do I have to sap the joy from her life? She knows that adult life is going to hurt, but the pair of us are adrenalin junkies. At her age & into my teens I rode the coasters, I rode horses, I cornered so hard on my motorbike I could pick daisies with my teeth. So each time she wanted to go on a gut wrenching ride off Mr Geek went & rode with her.

Did it kill her? No. Ok, near the end of the holiday Mr Geek had to carry her out of bed & she gained wheels just like mum for part of the day as she couldn’t stand. Most days we paced quite well, the day before we’d thrown caution to the wind, but had the “best day evaar”.

Hell, even I rode a coaster – Mr Geek scoped it out and made sure it had head & back supports, I spent the previous day resting, he lifted me in – I screamed for the entire ride (on which my kneecap moved completely out & I pulled out both shoulders) – he lifted me back out & helped me pop things back, soothed the muscle spasms, then I rested for two days. All that pain for just 5 minutes? Yes. Totally worth it for feeling alive for just a while.

TinyPants looks at me and knows what’s coming – right now she wants to live as much life as possible instead of snatching 5 minutes of flying.

So, yes I’m letting her dye her hair far earlier than I ever thought I would, but it’s a small price to pay for the catharsis that its brought her. And as for Beanpole, well there’s no hair dye there – her genuie self blossomed at high school and my meganerd is blossoming into the intellectual fangirl that I expected, but she deserves a post all of her own.

Note: I’ve spoken a lot about pain here – for more info on Ehlers Danlos Syndrome, please read this post.

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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.

Don’t Touch My Wheelchair

There’s been a lot going on recently and within those busy moments there are flashes of white hot fight or flight temper. As a rule, the flash remains in my head & I either bury it, or explain calmly after, but all flashes have a common theme: don’t touch my chair.

For ease of reading:
I have Ehlers-Danlos Syndrome; a genetic condition which affects connective tissues throughout my body making them stretchier than they should be (this includes tendons, ligaments, skin, muscle, internal organs). I dislocate or sublux (partially dislocate) daily and it hurts. EDS comes with the extra fun of IBS (irritable bowel), POTS (Postural Orthostatic Tachycardia), and for me, dysphagia (difficulty swallowing). Because of the pain, hip & pelvis subluxations, and fainting I use a wheelchair pretty much full time aside from trips to the loo upstairs where I use crutches to drag myself the full exciting 5m.

So, my chair is my mobility, it’s my pain relief, it’s my route to remaining conscious! So why the anger? May I give this in a few formal requests? (I’m going to anyway, that was more to allow for a personified narrative – I could almost pass my SATS with that paragraph…)

Don’t push my chair without asking
Sam, my ever understanding lady summed this up in words even the 7 year old demanding to push me around like an oversized doll understood.
“You don’t push someone’s wheelchair unless they ask you to. You wouldn’t let someone puck you up without asking would you? It’s just rude.”
I make a habit of having my handles on the chair tucked away because I hate it.

Firstly, it makes me feel very vulnerable when someone physically moves me either unexpectedly or against my will.
Secondly, I generally have my hands on the rims & if you move me forwards without warning, I may still be gripping and you’ll have a dislocated shoulder, elbow, or wrist on your conscience.

Mr Geek forgot himself today and did just this. He whizzed me up a ramp onto the train without warning & faced a very stern don’t touch my bloody chair conversation. Mainly because I was tired, in pain, and having been in ultra-alert mummy in London mode all day couldn’t tell who was pushing and panicked.

Don’t  pin my pain on the aid that relieves it
My pain management team appear to be at a professional crossroads. If they were married you would probably suggest seeing a counsellor. Instead, they played a game of professional ping pong with my appointment which as a professional, I found deeply unsettling.
One of the ladies is a pain specialist. She is quiet, encourages my progress (albeit slow), advocates pacing and patience.  The other is a lead physio who is very much the opposite. She is an advocate of movement, and pushing through limits, and overcoming mental barriers. Personally, I find her overbearing and generally cannot get a word in edgeways.

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When I saw them this week I happened to be circling the higher eschalons of the pain scale. I find it difficult to articulate my needs when I’m breathing through it. I’d managed to explain jy fears about loss of sensation (boiling water on the foot) which was taken seriously, and lack of sexual function which was dealt with in true British fashion.

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Whilst demonstrating a move to help me open up my pelvis & lower back, she noticed that I was uncomfortable in the chair. And here it came:
We must get you out of that chair. Being sat in that is what is making your back hurt!” Now, to an extent I do agree. Being sat still watching a loud person wave their legs in the air for 45 mins makes your joints seize up. Anatomically, the seated position does put pressure on your lower spine. So I asked her how we would work on that.
What’s about standing up at work?”
We’re going with a no there; I’ve already fainted in my classroom twice this term despite being sat in my wheelchair  and that’s scary for both me and the kids. In fact, it’s what prompted me to get the reclining back for the powerchair.
Can’t you just walk around at home?”
I’d love to! It’s my ultimate goal to abandon the chair in the house, but standing feels like there’s glass in my hips & walking with crutches not only causes pain (and tears), but runs the very real risk of a fall as I can’t feel my feet & have to really focus on where I’m putting my legs.
OK then, but we need you to open up that area, so lying down flat as much as possible with lots of stretching”
Again, unlikely at work (Just picture that classroom scene!), but doable at home… but stretch as far as possible?!
Earlier, she’d been quite offended when I told them that my Stanmore referral was rejected due to waiting lists & I felt left in limbo. She scribbled  furiously whilst telling me sharply that she dealt with plenty of Hypermobility & didn’t need London telling us what to do (🚨🔔AWOOOGA! Alarm Bells!🔔🚨).

This all sounds like a cop out, but I know my body & that pain in my hips & back isn’t from the chair (unless it can time travel back to 2004 when my 1st disc went). I also know that pain is not gain with EDS, and when I “push through”, I end up damaging something.  I do push myself physically by hauling my arse to wheelchair racing & swimming each week. I use the manual chair when I’m not at work, self propelling to the point of exhaustion & audibly clicking shoulders.

I’m doing my best, but sitting allows me to function. The chair damn well stays. I will not be confined to bed & stop working so I can point my toes again.

If at all possible, I’d like to enter the building the same way as everyone else, not via an extra 1/4 mile walk and via the bins.

Part of our lovely day out in London was dinner (we had hoped it would be celebratory, but we won’t hear about vague thing we cant talk about yet until tomorrow or Monday). As a special treat, we’d booked a table at Marco Pierre White’s Italian restaurant on the South Bank. I was beside myself with excitement as I love some of the TV stuff he does.
The entrance was beautiful with just 8 minor issues – all of them steps. The solution was to walk to the back of the hotel where there is a ramp.

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And bins. And no clue on how to get in.

Once in, it was just bliss! The staff were helpful & made every effort to accommodate us. And the food. Heaven! I utterly second MP’S recommendation of the bolognaise pizza!

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If I need help, look where you’re going!
I started writing this blog post about 12.30 am & it’s now 3.15am. Why aren’t I asleep?! Well, earlier Mr Geek helped me down a curb by easing me down backwards, misjudged the height, didn’t see the hold in the road & the chair dropped down the height of the curb plus hole.

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As my wheel touched down, my left hip popped out (unusual, it’s usually my right side) & I yelped. And swore. Then used the chair to wiggle it back in & had a little cry. Painkillers were duly administered & I assured poor Mr Geek that it really wasn’t his fault. Yes, he’s a bit clumsy & cakhanded, but London appears to have not mastered the art of the drop curb yet…

… and where they have included a drop curb, Southwark  Council has a funny idea of the best place to situate recycling bins.

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12 hours and 3 doses of dihydrocodeine  & oramorph later and I still have knives in my hip and sleep arrives in 10 minute naps until the muscles relax & go back into spasm & wake me up again.

Other quick & easy ones.
Please don’t move my chair out of reach if I’m on the sofa. Ffs.

No you can’t ‘have a go in it’

Please don’t suggest adaptations, then get huffy when I say no. I know you’re trying to help, but I’ve got it set up my way and tyres “just” 1/4 inch thicker will rub against my skin.

Also, don’t touch my chair.

Electric Dreams

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I’m an 80s baby, and as such will always sing these words with a muffled hum for the rest of the lyrics and an image of the film playing in my head. But why the bog title? Well, Sunday night is brought to you courtesy of the TENS machine (again). Despite all attempts to have a restful day today after yesterday’s escapades, my left shoulder took offense and tried to leave home. It’s usually my right one that pops out, but there’s nothing like a surprise sublux to end your weekend. EDS likes to keep us on our toes. As is usual for recent weeks, dihydrocodeine has little to no effect above standard baseline pain, & oramorph is barely touching it. We tried massage to help bring down the muscle spasms that are creating almighty knots & the end effect of that was Mr Geek hurting his fingers. Ice would reduce the swelling, but make the muscle knots worse, & heat vice versa, so TENS is the next option in the toolkit.

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One pad on a bicep, one on tricep from the grey channel, then one along the shoulder tendon & one just inside the shoulder blade (where the knots are) for the white channel. The pain Management team have suggested a bespoke setting of 100hz frequency & 200uS pulse width for 90 minutes at a time. As a general rule, the following settings are worth having programmed into your machine (all using 170 – 200uS depending on what feels right for you):

80 to 120Hz-acute pain

35-50Hz-muscle stimulation

2 to 10Hz – chronic pain

I’m using the acute pain setting because I’m using it for breakthrough pain where I’ve reached a decent 8 on my pain scale. This is also known as the ‘Fuck me that hurts. Hand over the drugs.” pain stage. On a scale of 1-10 this renders me incapable of doing much else than asking Mr Geek to rub my [insert body part] and clock watching for dosage times. With a decent TENS session and break through drugs, I can usually bring the pain down by 2 levels. This means I’m currently sat at “Not sleeping, but at least I’m not screaming.” level. Don’t look for pain scale facial expressions here – 9 & 10 get scrunchy faces & farmyard noises. That’s it. I’m a bloody zen master at breathing away pain facially.

This is all very irritating after having such a positive day yesterday. To help strengthen my upper body, I’ve been training (and I use that word as loosely as my joints) with a local wheelchair racing club for a few weeks. I’m fully aware that my lower half is past the point of no return. I have little feeling left in my feet & the lady areas are steadily going numb (That’s a whole other post) – and yes, I’ve flagged this up with more doctors than you can shake a referral at, but the regular limb detachment has been prioritised. So, I’m determined not to allow my arms the same option of defeat as my legs, and as such am building up the muscles to do the work of the crapped out tendons & ligaments.
Cue me being lifted into a paralympic style racing chair twice per week, strapped in and pretending that this doesn’t hurt in the slightest.
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The coach is lovely & works on the basis that we know our bodies, so you go to your own comfort level & adapt the chair, pushing style, & seating position to however your body works. As it turns out, mine needs to lean forward to take the pressure off my back & put less pressure on my shoulders, so we’re tweaking the club’s chair that they’re letting me use each session to get it right. For me, pushing down on a flat surface with no inclines or cambers, means that I can self propel. My lower spine still shifts every session, my SI pops as I get out, my elbows still give out if I get pushing wrong & my shoulders will not accept arms lifting up or out, but I’m finding my style. It’s slow, it’s slightly wonky, but physio isn’t meant to be easy.

Pros:
– I’m building muscle on my arms & core
– I’m outside twice a week
– It’s social
– I have a whole hour where I don’t need help
– feeling of freedom. Like running.
– Massive aerobic high
– Long term – possibly improving POTS

Cons
– Extra bruising from wheel guards
– Pulled shoulders from pushing too hard too soon
– Pulled elbows as biceps get tighter
– skin worn off on fingers (forgot EDS skin & friction doesn’t mix well. Cure: cohesive bandage wrapped over gloves)
– Getting cold outside (Then cramp!)

Ultimately, if it allows me to maintain where I am right now without any more spirals down, I’ll be happy. This is the first on land exercise that hasn’t injured me substantially more! And Mrs Physio will be super impressed at my efforts to get off my arse… or at least get my arse moving.

So here’s to my favourite two pain relievers right now: adapted exercise & TENS.

Here’s another table of possible settings with some handy explanations for use from NaturesGate

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Making it through the first few days

…is pretty much thanks to my shiatsu massage cushion. There are a few things that being back at work after a summer break reminds me of:

  • Whilst actually teaching makes my back feel fine (lots of moving around on my feet), sitting at a desk with emails and planning and many many meetings causes some twinges that feel very wrong and my nightly spine massage is more a ‘put everything back in place’ rather than relaxing.
  • Wearing shoes is just not natural! Even my soft ballet pumps are ripping me feet to pieces!
  • I’ve totally forgotten how to put a smart outfit together. I’ve been a total hippy all summer!
  • I need to warm up my voice better. Must. Not. Lose. Voice.
  • headaches go away much quicker after some ibuprofen and a metal shiatsu rolly thing digging me rhythmically in my shoulder blades.
  • I love teaching. My body may be falling apart, but I’m totally back in the saddle!