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?

Blogger Recognition Award

I received a surprise post with one of these from Ren of Broken Down Body (how lovely!! And thank you so much!). It’s lovely when other bloggers make a point of telling you they like your writing (& a tiny bit affirming as so many of us blog in place of verbalising!).

I love reading her blog as it’s a different view of Ehlers Danlos Syndrome which we share and she handles things with far more grace than I do!

Anyway, the idea of this is to write a blog in which you follow

The Rules

1. Thank the blogger who nominated you.

2. Write a post and display the award.

3. Share in your post a brief history of how your blog started.

4. Give advice to new bloggers.

5. Nominate other bloggers you feel deserve the award.

6. Let each blogger know that you have nominated them.

So, without further adieu here it is:

1. Done. (See above)

2. I rather think the is it… (see image above)

3. How my blog started:

I’ll admit, I had to scroll back a while to find out where all this started in early 2013, but apparently I arrived on this blog with a bang, or rather a mooncup. I’d written a very personal blog before, but decided on the grounds of mental health I would remove my previous blog and start this one. Initially it was a bunch of random topics about being an insufferable geek, mother, and teacher. Looking back, it was clear where it would end up with my physical health & mobility rapidly declining throughout the lifetime of my blog. In its current evolution  (this is not it’s final form), I blog about teaching, Ehlers Danlos Syndrome, disability, and accessibility.

4. So …dear new blogger, 

Expect some weird comments. You can’t control who reads your blog so be careful posting too many personal details. Don’t use people’s real names (but people will get to know who ‘they’ are).

Most importantly, don’t ever read the search terms & if you get a troll, screen capture them and blog a response. You’ll find 95% of the blogger community will get right behind you.

5 & 6. Nominating other people is hard because there are so many amazing blogs out there. Instead I’ve nominated those people who have made a real impact on my life.

Mom Goes On – I feel like we’ve been blogging alongside each other forever & she always leaves such lovely comments for me. Thank you xx 

JBOT | Adaptive Disability Lifestylewas the blog I turned to when Ehlers Danlos really started to kick my arse. Her written advice kept me sane in the wee hours (and she’s lovely on Twitter too). I genuinely wish she was my OT.

Sarah in Wonderland is another person having fun with EDS… but in style. I actually met her on Twitter & she is always there for my 2am outbursts! She’s also convinced me to keep trying to look human despite major pain.

Vicky at Around & Upside down is another Twitter friend  (are you getting a pattern here?) who has seen me through a few difficult nights. Eventually we’ll write that chronic illness ahem ‘book’ together!

Sarah from Bloo n Stuff because she’s outspoken & insufferabley chirpy! And has very good hair.

Also, an honourable mention for Polishing Dookie because her shit is funny.
So, there you have it. One award & paying the love forward to these wonderful people. Mwah xxx

The Paralympic IPC Says I’m Not Disabled

Please forgive the rage that is about to ensue. This post is purely a “get it out of your head quickly” post.

This year I discovered wheelchair racing as a means to defy my enormous decline in physical health. I’ve blogged about this before & how it is the first sport that has not caused me excruciating pain. About how I finally felt able to participate in something physical. About how the inclusive nature of my team mates boosted my mental health immensely. I have my 1st post-holiday training session tomorrow evening & right now, for the first time ever I don’t want to go. Why?

Fast forward to tonight where I happened to stumble upon a twitter conversation about disabled sport classification by the IPC (in oder to take part in “real” races, you must be classified). They have released a statement specifically excluding Ehlers Danlos Syndrome as a qualifying disability for disabled sport. What this means for me is being treated as an able bodied athlete (you can stop laughing now…. seriously, stop it.) and as such can only participate in open races with no chance of joining my friends on the track for races against people similarly matched to my own actual ability.
Ok, I was never destined for anything other than local competitions & having fun, but I have rarely wished my genetics on anyone, however I’ll make an exception here. Especially after this news story. I am more than a little bit gutted. Any visions of progression in my one physical outlet (no matter how far fetched they may be) have been dashed because someone decided that one type of disability was “better” than another. 

How dare they exclude genuinely disabled athletes because they don’t fit into a neat little tick box?! You are a professional body and as such have an obligation (if not legally, then morally) to pick up a goddamn book and read about conditions that cause a spectrum of disability. If you ever wondered why  Ehlers Danlos Syndrome is considered an Invisible Illness, here is you prime example at the very highest level.

What does your not disabled look like?

It looks like a full time wheelchair user

It looks like someone who fights with their racing chair & dislocates joints and keeps going.

It looks like chronic pain that eats away at you & makes you question at 2am exactly why you keep going.

It looks like more medication than I can count on two hands.

It looks like my husband having to cook for me, and help me wash & dress myself. 

It looks like strapping myself with physio tape to keep joints in place. And when that doesn’t work, biting my cheek to stop myself crying from pain in front of the kids I train with.

It looks like being lifted from my racing chair into my day chair due to no sensation in my lower legs because my spine is slowly curving & compressing my nerves.

Now tell me how perfectly able I am.

Fuck you IPC and the bureaucratic horse you rode in on.

Introducing Students To Disability- Year 2

Last year I wrote about how I explained to my classes why their teacher who was previously using a stick, then crutches, was now using a wheelchair. Or for those new students, why the person in the wheelchair was in fact actually their teacher.

https://thehippygeek.wordpress.com/2015/09/22/the-easy-way-to-introduce-260-students-to-a-big-change/

I’m starting to look at how I should update that message to reflect where I am now & what I learnt from last year (yes I know it’s the start of August, but yes I’m also already planning for September).

The past year has taught me a few important things.

  • Discipline is harder from this vantage point – set boundaries and [insert deity here] help them if they cross it. 
  • Kids are often curious. Often a question about me is really about a family (or even them) that they’re worried about.
  • Kids adapt – after a few weeks, you’re just “Miss”

We use Google Classroom & as such I will post this to each class which allows them to read it in their own time & stops it eating into lesson time.

Dear students,

You’ve probably noticed that Mrs Geek has evolved wheels & you might have a few questions. Our lesson isn’t the time for this, but you can always ask me questions during break / lunch! Until then, here’s the biggies:

Why are you in a wheelchair?
I have a genetic condition called Ehlers Danlos Syndrome & POTS. EDS makes my joints & organs more stretchy than they should be, so I get hurt quite a lot and those injuries don’t heal very well. POTS means that when I stand up, or get too hot, my heart beats too fast & makes me dizzy. I’m using the wheelchair to stop me from hurting my joints, or dizzy, & getting too tired to mark your homework! People use wheelchairs for lots of different reasons. I love teaching you & this will help me to stay teaching you for longer:)

Can you walk?
Yes, a little bit. Don’t be surprised if you still see me stretching out my legs in the chair, or stand up. You’d be achey too if you sat down all day! Lots of people who use wheelchairs can still stand, but it’s safer for them to use the chair.

Why do you sometimes have other bandages?
You might see me wearing various different neoprean supports. I can damage my joints very easily & these help. Lots of you have noticed my knee brace (yes, you may call them Robolegs. I do!). Sometimes you might hear my joints cracking or pop – don’t worry!

What do I do if I need your help?
In some rooms it’s hard for me to get to you, but you can come to me & I’ll take control of your screen. We’ll keep using Google Classroom & that should help us lots! If you are at all worried that you’re not getting enough of my attention,  please come and talk to me.

Is it OK to ask you questions about your disability?
I don’t mind you asking outside of lessons. I can’t promise I can answer them all, but being with someone disabled isn’t something to be scared of. Even adults aren’t always sure what is ok to ask. I promise not to be offended as long as you are polite.

How fast does your chair go?
The powerchair you see at school goes 4mph which is a quick walking speed. I’m much faster in my racing wheelchair. Keep an eye out for me at sports day!

Can I have a go in your chair?
No. I rather need it:)

Can I help in the classroom?
Sometimes I may ask you to carry books / chrome books for me & holding the door open is always appreciated. Please keep your bag & coat under the desk & your chair tucked in to allow me to get around the room. Other than that, our classroom is business as usual.

My Ruby Slippers Are Defective

Today 

  • I didn’t want to move when I woke up in Dante’s 7th circle of joint pain hell.
  • I didn’t want to keep down breakfast
  • I didn’t want to sit in the car for 3 1/2 hours to Calais
  • I didn’t want to wake up regularly gasping as we braked & my back flew into spasm
  • I objected to paying extortionate prices for toll roads that had appalling service stops 
  • I didn’t want to lay curved into a contorted angle on the train whilst it rocked me side to side & scattered my ribs
  • I didn’t want to remain in the car for a further 2 hours to drive home (see waking up above)

I didn’t want to travel on a flare day. But I did. And now I’m home in our bed set up just for us having had a bath in my lovely accessible bathroom and a cuddle with the cats. 

There’s no place like home.
Addition: 

What made me flare so badly today? It was a combination of being in the car the previous day for nigh on 6 hours, then staying in the worst hotel we’d ever booked. The Sejours & Affaires clairemarias in Reims.

Here is the brochure photo of the 1 bedroom apartment from Booking.com – this is clearly listed under “facilities for disabled guests”.

And another of the kitchenette

So, we were expecting basic, but clean and functional as a stopover. This was billed as a wheelchair accessible apartment which we double checked by email & relieved confirmation of – this roughly translates to “is on the ground floor & has no stairs”.

This is my photo:

Aside from smelling distinctly of the goat farm (?!), the wall paint was peeling, the cabinets were grubby & the kitchenette and general location reminded me of when Mr Geek & I shared a student flat. In its favour, the WiFi was excellent (so, yes, very much like our flat). We slept on the metal sofa bed which had a mattress approximately the depth of a Kardashian which promptly instigated my shoulder coming out as I turned, my pelvis twisting, & a nasty clunk in my neck that made my hand go tingly. I eventually fell asleep laying flat on my back with my legs in a full lotus to lock my hips in place.
My magic touch with hotels was missing on this one. By the next morning, I wanted my Ruby Slippers.