Dear Fatty

(Yes, I know I shamelessly stole the title)

New (academic) year, new challenges. But this year marks a big one and a massive personal challenge for me. If you’re reading my blog, then you’re probably already know about the fun & games I have with Ehlers Danlos Syndrome – TLDR; it’s shit & cramping my style, but this month marks the 1 year anniversary of fracturing my spine and just over a year since my hearing dropped to unworkable levels. Life went on. But without my beloved racing that was an outlet for lots of rage – but now I’m back! Wonkier, in more pain, and with an extensive arse (the image below is my “thinspiration” – a combo of being stationary & evil painkillers has wrecked my weight).

So, with new work challenges I knew that I needed to build in some head space and get back to racing, but with our club now super popular it would be difficult to have a chair set up for my weird & wonky limbs. I’d saved up a percentage and reached out to The 53 Foundation for support – then after completely forgetting I’d contacted them I got an email telling me that they’d love to help me fund the rest of my chair & to go ahead and order it!

As an able bodied peron, the financial layout for going for a run is as simple as some trainers & leggings – an entry level wheelchair is £625 (professioal chairs start at £3k), so this grant was quite literally a game changer.

With my chair winging it’s way to me, I knew I had to pay this kindness forward and whilst I’ll be racing to raise money for the 53 Fondation soon (I promise!), there is one woman who I can’t ignore for my first race.

That’s me in the lurid pink alongside team mates who made sport fun for the first time ever.

That's me in the lurid pink!

At the end of October, to prove I have properly taken leave of my senses, I’ll be participating in the Great South Run (oh the delicious irony!) in my chair supported by my amazing friend Rachel & Mr Geek. Instead of sponsoring me for a big charity, I would be eternally grateful if you would consider making a donation towards Shona’s powerchair GoFundMe. It breaks my heart that this amazing young woman who dedicates herself to helping others in the bendy community has to resort to crowdfunding to get an appropriate chair, but lots of us have been there.

Training starts in earnest now and I’ll be posting updates on how we’re doing (even if that is elongated whining about how much everything hurts!). I’m not aiming for a PB – because Ive never pushed that far, so it will be a PB! I have no aims for elite sport – I simpy want to finish in as few pieces as possible (and have the following week already set aside for bed rest).

Wish me luck!

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Working 9 to 5… and 6, and 7

Teaching is less of a job than a calling. It’s in our bones. We just can’t help ourselves.

This year I made the momentous decision to join the other 50’000 UK teachers who left in 2015 in stepping down as a full time secondary school teacher. Over the past two years, I’ve done that job on wheels and through a lot of painkillers, but in the end it wasn’t my crappy health that sealed the deal. 

I’m not actually leaving teaching. Instead, I’m moving to pastures new where the only grazers are sixth form students, retaining a very part time role in my current place, and offering online private tuition. It may seem bizarre to leave one full time sensible job to combine part time roles, but hear me out:

  • My sixth form teaching is the highlight of my day. But my subject is niche & in its infancy at my new college so whilst I build my little empire of nerds, hours are reduced. A Level Computer Science students challenge me mentally and I love seeing them fan the first flickers of a flame that grows to so many of them ending up in the industry, or at Uni studying the subject I love.
  • Leaving my current school is bittersweet. Here, I have friends, comrades, family. There are many things that try my patience to the bitter end, but parting was such sweet sorrow that I couldn’t leave completely. 
  • Private tuition brings a whole new dynamic to my teaching skills. In some respects it’s much easier than classroom teaching as there’s no rushing around dividing your time, or dealing with behaviour issues, and you get to develop a strong working relationship with tutees that is difficult in large classes. On the other hand, it’s much harder as you are giving constant input – there’s no quiet purposeful practice when “on the clock”, and many students who come to you as a tutor are there because they’re not keeping up for one reason or another. The stakes are high, but the rewards are enormous.

So that leaves me in a bit of a pickle for now. I’m winding down my full time role, whilst also not winding down at all as there’s still 7 weeks left to go, I’m preparing for my new role in September, and I’m already knee deep in online tutees in the evenings and weekends so I can hit the ground running (or wheeling) in September.

I’m exhausted. But therun up to the big jump to a new Lilly pad is an awful lot of fun.

So, for now you can find me here: www.TeachAllAboutIT.uk doing my thing & quite literally teaching Computer Science to the world!

Call me what you like, I can’t hear you!

Ehlers Danlos is the Syndrome that just keeps on giving. Today I had the joys of having a tuning forks placed on odd parts of my head. No, this wasn’t some strange hippy healing ceremony, but a real life scientific hearing test.

My doctor bashed it against her desk then placed it on various parts of my skull. Everyone else could hear it except me. Seriously, you heard that? Shit.

Having checked her unusual methods on Dr Google, this was to see the type of hearing loss I have. It is actually a thing that rules out my sinuses or ear canal causing the issue.

I’d suffered a bit of hearing loss after having meningitis in 2008, but not huge volumes or enough to affect my daily life. More recently, I’ve caught myself snapping at the kids to stop mumbling when we’re in the car & insisting that Mr Geek be facing me when I talk to him because he’s talking in the wrong direction… I’m surprised no one had mentioned it TBH. The penny dropped when I went back to school and couldn’t hear the kids when they answer questions in class. I can see their lips move, but all I get is a background hum if there’s other noise. There is ALWAYS other noise in a school & I’m exhausted by lunch from second guessing what they’re saying. But I didn’t really want it to be a thing (I have enough things! I don’t need any more things.). It is apparently quite an obvious thing according to my graphs. See? Graphs. I love a good graph.

The joys of EDS means that the bones in my ears aren’t held together as tightly as they could be. Of all joints, my ears?! FFS. 

So what now? Well, I started off with an off handed tweet.

…and now, I’m trying out some basic hearing aids to see if they help & waiting to see how my referral to Action for Hearing Loss can help. Things may take a little while because I’m under 55 and I’m not meant to lose my hearing before I get old. I am a woman of many talents: I can lose my mobility, consciousness, AND my hearing. Go me.

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.

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.

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.

F*** you IPC and the bureaucratic horse you rode in on.

A Spa Day … with the kids

Thursday was mummy’s turn to choose the activity for the day. Mr Geek had been very vocal about wanting to return to one of the German baths during our stay, so we’d done a little research on which one would be most suitable for all of us.

Note: the photos on this post of Vita Classica are from the Therme website as they do other permit cameras inside (good thing too!)

3km from our hotel was the Casseopeia Spa which had excellent reviews & welcomed children. It was “textile free” which would mean letting it all hang free, but when in Rome etc. I started searching for more information on accessibility, but discovered that it is currently closed for refurbishment until October. Bum. I did a little more searching and found an alternative spa in Bad Krozingen called Vita Classica.

Interestingly, many of the reviews on TripAdvisor bemoaned the priority given to those with disabilities… cue cartoon style double take. Although mildly concerned that it might be a bit clinical, and rather relieved that they require bathing suits in the Therme (families cannot enter the sauna area other than Saturdays when it is “family day” as that area is textile free), we decided to give it a whirl. Just to double check, I used the Spa’s online chat facility to make sure I could get in.

The spa was about 8km from our hotel in Schallstadt, so I suggested that we make use of the amazing network of super smooth cycleways and get on our bikes. I’m feeling super confident that my wheelchair bike is up to roaming further from our base & this was an excellent test for the battery life (we ended up through a few interesting navigation decisions riding over 20k during the day which added to a battery that had already done a good few km during the week, taking the range of 1 of the two lithium batteries to just under 30km!).

Our fears about the spa being clinical were unfounded, although disabled facilities are indeed located 1st and there are a good number of prominent accessible changing & showering rooms. On entry, you can either take your own wheelchair in, or leave you chair & make use of one of the poolside chairs which means your chair stays dry!
There are a number of pools with most having a temperature of 34° (one has a temp of 29°, and another at 36°)

A static hoist is available for one of the ‘Blue Room’ pools which doubles as a water therapy pool (at 34°), and a mobile hoist is available if required. As the kids were keen to move between pools, we opted for Mr Geek lifting me from the chair onto the pool steps & bum shuffling down into the water with my waist float strapped on, then reversing this process to get back out.

Through the blue room is the ‘hot pool’ at 36° where we spent a good 30 mins just floating with Mr Geek massaging my neck whilst the girls enjoyed the calm. It’s too warm to swim, so instead you just floating about allowing the warm water to soothe everything. One mildly worrying thing of note was there was  need for them to have a sign printed stating no sex in the pool or showers! How many times does that need to have happened to warrant a metal sign?!?

The two outside pools were slightly cooler at 34° (and outside, so felt cooler) and were more invigorating. The first was a round pool with a variety of jets that slowly floated you around in circles. The jets ranged from weird tiny bubbles that turned the water fizzy, to stand up jacuzzi bubbles, to a lay down full body bed of bubbles (Beanpole & TinyPants made a request to remain there indefinitely. Nice try kids). I was particularly taken with this pool & happily floated in circles in the fizzy warm water for ages. The added weightlessness from the bubbles served to allow me more movement and I could gently cycle my legs releasing my hips & back. 

The second one outside pool was more of a round robin massage pool with shoulder water jets, sit & stand jacuzzi bubbles, a gentle rapid, and massaging waterfalls. The bubbles & jersey are cycled so not everything us on at once and people move around on the sound of a bingbong noise. It was in here, that I experienced a waterfall massage on my lower back & hips – by using my float & Mr Geek holding me, the water fell directly onto my lower back & pelvis at such a rate the my then dislodged SI was battered back into place with an audible clunk that we heard over the noise of the falls! It was deliriously good.

The weather began to turn & knowing that it would take a little over 30 minutes to cycle back, we headed out to get changed.

By the time we left it was starting to shower, but this slowed so off we went. We even had time to stop for a quick family by the river selfie because we DEFINITELY WERE NOT LOST.

In fact we were. We failed to follow a simple cycle route so ended up going all around the houses which was all fine and dandy until it rained. Properly rained.

Wet, cold, and looking like I’d entered a wet tshirt competition, we arrived back at our hotel with two very angry children who were placated by dinner & as much ice cream that they could stomach (a lot) and all was right with the world again.

So a spa day and a cycle on Leonardo with this view totally balances out the horrible weather and my left hip popping out after TinyPants climbed onto the bed for a cuddle spawning a whole night of tens & no sleep. But seriously, look at this view!