What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

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Talk to The Hand

We’re going away this weekend with a group of friends that we see a couple of times each year in person, and regularly online. We are the good side of meeting those weirdos that spend hours playing computer games – we are those weirdos.

Each time I see them a little bit of me has dipped. It’s like a health version of those growth charts where you measure the child & mark it on a door frame. The last time we all met up was last September & I was coping well – my rosacea was trying to eat my face, but I was cosplaying in a mask so it was fine. Since then, my neck has got worse and causes much more frequent blinding migraines without warning, and my hearing has got worse.

The first is unpredictable, but I can throw drugs at it & they’re used to me being gently massaged back into place by Mr Geek as we carry on our game. There’s a neck brace, but that’s to keep my skull from sinking & re-enacting scenes from GoT. Like the other braces, largely ignore it. The second is constant and more of an issue – I can’t hear you.

So this post is more of a pre-holiday Deaf Friend 101 for my friends of stuff I’ve learnt works & ideas to nake everyone a bit more comfortable. It also includes a few signs so you know why I’m flapping my arms about.

I Can’t Hear You (properly)

Seriously, I can’t stress this enough. It’s got worse since the migraines stepped up a gear and if you call my name, I’m going to hear (maybe) the vowels – if there’s other people talking, you’ve no chance. To get an idea, imagine being in a really noisy club (yes, I know we don’t do social) and trying to have a chat. Their voice melts into all the other noises & you haven’t a fucking clue what they’re saying. Now put noise cancelling headphones on that play a hugh pitched ringing, and you’re almost there in my head.

My hearing aids amplify everything, not just your voices. It’s sensory overload – whilst it makes everything clearer, listening to crisp packets open in HD all day gives me a massice headache – I prefer my quiet dentist drill head.

How to help:

  • If I’m not looking at you, tap my shoulder (it’s not rude) or wave
  • If lots of people are talking, make eye contact & still wave
  • Talk normally, shouting distorts your mouth
  • Please don’t cover your mouth (if you have a beard expect a fair bit of guess work on my part)

Want a quick answer? Try a sign:


(For help you, just switch the direction)

Playing Games

Board games are great because they have visual clues to what’s going on. Except we play arsehole games where we switch rules & co-op (badly). These are confusing anyway, but I am channelling my World of Warcraft character here – I’m on /follow and wondering why you guys are yelling.

This does not mean that I don’t want to play! I have some serious FOMO right now. I shall go to the ball & laugh inappropriately because I misread what was going on.

Ooh look! More videos – because every day is a school day 🙂

Win!:

Lose!:

Fire Alarms & Such

Being practical, you stick nine nerds in a cottage one of is going to set the fire alarm off. I do hear alarms, but duller (is that a word?) so they invoke less of a reaction. In an emergency, just point to the door – I’ll get it & as we’re on the ground floor gettig out on wheels shouldn’t be an issue.

For less desperate stuff…

Need:

Doctor:

Tired (not big boobs):

Bed:

And finally, because they’re a staple at every meetup & I want to see you sign this without laughing (icepop):

Finally finally, yay for the weekend & Superbowl Sunday with awesome people 🏈

All of the sign videos are from the BSL Dictionary.

What is your major malfunction?

This is a ‘remember this’ post. Stream of consciousness shortly after ‘a moment’ is useful to print out and use for pain management. Apologies if it’s a bit garbled.

There’s this wonderful sweet spot after a massive pain flare where everything becomes calm & quiet. Even if it invariably returns, for now it’s like the eye of the storm and I can lay here totally still aside from my hand tapping my phone and feel the multitude of painkillers dulling each of my nerves.

Describing this might sound like I want to be high (quite the opposite! The side effects suck, but these drugs keep me functional as a human), the pleasure gained from this quiet moment is in the polarisation from less than an hour ago when I reached a crescendo which left me literally rocking in pain. No-one seems to know for certain what causes these God-awful headaches aside from craniocervical instability (posh word for wobbly neck & skull) caused as ever by Ehlers Danlos Syndrome, but after sitting up for too long, or being bumped, the flashing lights signal the party is about to start.

I’ve tried to explain this before, but without success so just bear with me on this one…

Once the flashy lights start, one eye feels like it’s bulging & a steady thud starts in my cheek. Over the past few weeks, I’ve been taking sumatriptan at this point to stop it going further – for 6/8 it’s worked. I could kiss the GP that suggested this literal wonder drug. It didn’t work tonight, but the trigger was different – tonight I’d hurt my neck washing my hair (the water weighed it down & something popped), then I knocked out my jaw at dinner.

When it progresses, which it did today, that squishy bit at the base of my skull that was sore before starts to sting, and gradually the pinching in my neck moves down my spine until my pelvis aches. The pinching feels wet – there’s no other way to describe it. Like cold water travelling through my spine to where things hurt and either sending electric, tingling above my waist, or thuddy dull pains into my legs.

With my head pounding & my spine burning, my usual level of hearing dropped. This scares me because having lost my hearing reasonably rapidly I’m always concerned about how much will come back. Usually, I’m down by the dog in the Moderate/ severe range in the graph below (I hear lower sounds better & speech is only audible if there’s no background noise), but when it dips everything becomes like listening to Charlie Brown’s teacher. It’s not that I wouldn’t cope, but I’m still very much functioning in the hearing world.

At this point I panicked. I know it’s the worst thing to do when you’re in pain and it just makes things worse, but reaching my version of an 8 / 10 on the pain scale causes me to hit the ‘make it stop’ button. There is no painkiller on the planet as successful as Mr Geek kneading my shoulders like dough when I’m backing away from my own body – why? Because in order for the actual painkillers to take effect I have to calm the fuck down.

I’m not actually rating my pain for fun here. Although monumentally subjective, pain scales are a useful way to stop, body check, and assess just how bad this is – it’s as objective as pain is going to get. The scale also provides facial images for Mr Geek to get visual cues of where we are. In this case, we’re well into nothing but the pain.

Many people with EDS have pain tolerances that would make a Spartan blush. I’ve been mildly annoyed by a broken bone, asked for paracetamol following an organ rupture, and yet had a full on sobbing fit because I had a cold. Like I said, messed up.

We treat my pain according to a pain management plan – imagine if you will a birth plan that we use daily (eg. him pointing to the plan & reminding me that heat and tea and soothing music will make it easier, and me yelling at him that if he ever wants to have the ability to get laid again he will give me drugs). This means that we work our way up from paracetamol, to codeine, to NSAIDS, to morphine, to hospital. Because of the brainfog, he’s in charge of timings & doses – this is a sensible step back on my part. Yes, it infantalises me, but on the flipside he is spreadsheet levels of anal about dosage meaning I camnot accidentally overdose.

This evening, after my spine was pinching, my arms were tingling with pins & needles, my hearing dropped out, & I was nauseous (but not sick). Despite feeling nauseous I was also really hungry. Mr Geek gave me everything up to morphine and sat behind me rubbing my neck & shoulders for an hour. The rubbing is similar to TENS – it’s distracting and the skin on skin chills me out.

It had reduced to tolerable levels & I laid quietly for a bit with my phone in ‘night mode’ & my heated blanket on but I could feel the pinching riding up again so we opted for morphine at the lower dose (this allows me to top up if needed, and keep my general dosage low). Laying in the dark with my hearing out is like sensory deprivation and having a distraction is useful.

A second dose of morphine was enough to create this lull and the potential for some rest and enough clarity to describe the type of pain properly instead of a mumbled “er, sort of stabby” when with my doctor. It’s very difficult with hindsight to describe the stages as it all rolls into one ‘bad headache’, so whilst this may not have been the most exciting read it will be useful for me & my doctor at the next review.

Post pain, I’m left with an ache along my back, a pounding headache, and absolutely knackered – this post was written in between sudden naps (and deleting the random characters from nodding off with my fingers touching the keyboard!)

If you got to the end, erm, hi?

Escapism

So here’s the thing. I make a lot of jokes about goofing off & not trying too hard – all of these things are basically pure fantasy. I love my job. Teaching is in my bones and I find it nigh on impossible to switch off.

I work “part time” now, by which I mean I am contracted to work 4 days each week, spend my day off marking & prepping, and tutor 4 evenings & Saturday mornings. Part time = 45+ hours each week. When I’m not working, I’m mulling something over about work. So I needed a distraction that wasn’t generalized ranting on Twitter.

I’ve blogged a lot before about the need for pacing and work/life balance, but I just suck at it. Take right now as an example – it’s past midnight & I have a meeting tomorrow (today) with someone who I really want to approve of me as a teacher (fuck. I’m 38 & have been doing this a decade. Why am I still seeking approval like a puppy?!). Ok, I’m mainly awake because my knee dislocated, it’s swollen like a balloon, and liquid morphine keeps me awake.

So yeah, here I am at peak anxiety with pain levels that are piercing through the usual drugs & a top up of 20ml morphine. Anxiety does not help with pain, so I learnt to meditate.

I ought to mention that I’m equally shit at meditating because my brain gets bored. I sit here & do a “body check”. Breathe in……. Breathe out….. Breathe in…… Toes…um… Shit. I can’t feel my toes! …. Calm down dickhead, we haven’t felt our toes in years. Oh yeah…… Breathe out…..

I place myself somewhere calm….. here I am dancing gazelle-like through the fields of my mind… getting to know my new roleplaying character…. Clear your mind…. Nope…. And relaaaax…. Nope.

Because actually where I get to relax is inside my head creating stuff. As a weird only child, I spent ages in my room building home made maps & villages where the stories I told to the people in my head took place. I was generally far happier chatting to made up people than real ones. Mr Geek shares my love of sitting quietly with little plastic figures & watches from his office as I bring my imaginary friends out to play with others.

It’s been decades since I created something more personal than cool learning resources. I’ve sunk all of my creativity into developing CSI style codebreaking resources, Elma the Elephant hexadecimal colouring, Game of Prolog, Revision Twister… But over the past few months the games have crept back in. First came Warhammer, then Bloodbowl (if you suck at meditating, try painting teeny little orcs for weeks on end), then over the past few weeks I’ve been lucky enough to be invited to join some roleplaying games online and have just started a weekly campaign.

Before you back away from the nerd, hear me out.

Today was Game Zero – working out who we are, our back stories, the world around us & how we gel as a team. What I remember from teenage games was us as kids picking the warrior woman with the massive tits and distracting guards with nipples (and frankly nearly killing our shy DM who barely looked at women let alone knew what a real boob looked like). Instead, what we got was a game that lets us test out our psyche.

“What do you want from this character?” Holy crap, that’s a deep question. By this point I was already invested so just went with it.

In a group of just four, one is seeing what it’s like to have real faith, one is living knowing that they will die, one is merging being a young soldier with hidden disabilities, and another a manchild rebelling against caring parents for the greater good of those around him. This is heavy stuff – not your average elven archer skipping through the forest in suggestively shiney tights. I have to hand it to Blood – she unpicked our characters until they were real. We all know at some point a specific character is going to die, and yet we’re going to willingly get attached. Self-preservation mode has pressed the eject button & has shot itself through the ceiling.

So here we are, instead of meditating and clearing my mind to reduce pain, I’ve created Pip (Lady Philippa Billingworth), a genetically modified soldier with the anger issues of an orphaned teenage girl, topped with a mutation causted by the faulty collagen gene already in her body allowing her to bend & break her body seemingly at will. She’s the angry, frustrated internal me, albeit with a 7ft much more functional body and weapons. That can’t be a good idea…

To see what we’re up to & some of the other weird and wonderful activities from the guys, check out these links:

You can find me on Twitter at @I_Am_Spanners

Please do check out the Bloodthirsty puppets at either their website or Twitch (where you’ll get points for watching which you can use to mess with the game play!)

www.bloodthirstypuppets.co.uk

Bloodthirsty Puppets Twitch Channel – Regular games of various fun. Catch me every Monday at 7.30pm GMT, and watch along with me on Friday Night Spiced at 8pm GMT (unsurprisingly on Fridays), plus plenty of others.

And of course, I can’t do an intro to me being allowed to play with tese guys witbout mentioning ‘the hot one’

Skaggeth Twitch Channel – this guy is an absolute dude.

Almost brushed my hair

Happened just the other day.

It was getting kinda long….

Ok. Enough with the terrible Crosby, Steele, Nash, & Young puns (Apolgies to their fans).

I’ve blogged a number of times about my journey into the realms of no & low poo in the pursuit of taming my curly hair. And with all credit to Lorraine Massey, the creator of the Cirly Girl Method, it really has worked. I’ve gone from looking like this:

Red - puppet from fraggle rock who has wild fluffy hair

To this:

Merida from Brave

Now I know that Merida is not known for her uniform beach waves, and frankly neither will I be. My hair is an extension of my personality, and as such is wild, unconforming, has a mind of it’s own, and is more often than not an alarming mess. But, it’s now doing what my genetics meant it to do instead of being dried out by sulphates and brushed into a frizzy mess. It’s now a curly mess!

This isn’t it’s finest hour (or mine – this was 1.30am New Years Day!), but it was at least behaving. So, why the post title? Well…

I’ve used a number of help groups online to guide me through my curly girl journey and learnt so many new terms that I almost speak a new language. It’s been a journey to find out what makes my curls ‘pop’ (look defined) and which conditioners & products work for me – and the kids, and interestingly there isn’t much crossover despite us all having wavy/curly hair. In the end, I’ve got a list of what works for me and it’s not wholly faithful to the strictest methods.

One particular product has an alcohol listed waaaay down the ingredient list and inadvertently posting this on a CG group was met with almost apoplectic rage reactions (I’ll post the routine below). Don’t poke the hornet’s nest? Why not? Fanatics annoy me & announcing I now also used sulphate free shampoo to negate hard water in addition to the evil styling product was just too much for some. It was akin to running into a room of hard line vegans smothered in nothing but bovril & shouting “I love bacon”.

So why is my routine still working? Probably because I follow the foundations of no sulphates, no silicones, & no brushing without being terrifically obsessed by having perfect 3c curls. Because I don’t. And it’s just hair.

Current routine*:

(✔ = hardcore CG friendly)

  • Small amount of Shea Moisture Black Castor Oil Shampoo (sulphate free) ✔
  • Cowash & detangle with Sainsburys Coconut Oil Conditioner & wide toothed comb ✔
  • Condition with Shea Moisture Coconut oil & hibiscus conditioner (leave in) ✔
  • Add a bit more by squishing in Organic Shop Honey & grape conditioner ✔
  • Squish in a tiny 2 peas worth of Cantu curl activator ✔
  • Squish in some Boots pink Curl Creme (….eviiiiiiiiiil – has a bit of alcohol, but removes all frizz so fuck it)
  • Squish in some Shea Moisture curling custard ✔
  • Plop for an hour
  • Diffuse until crunchy
  • Replop into a buff/satin cap & sleep
  • Scrunch out any final crunch in the morning

*My hair is super thirsty, so this much conditioner will not suit everyone.

This only happens once every week. All other days I sleep in a buff & if need be wet, re-diffuse, thenlargely ignore.

I’m looking forward to getting a bit more length so I can properly channel Merida.

For now, have you found what works for your wavy/curly/coily hair? Share the love!

Know Thy Heritage – A Christmas Investigation

With the season upon us where the weather is colder, the nights are longer, and the tribal call of the Daily Mail reader turns to all things British Christmas, it’s time for a festive blog. There are a number of videos doing the rounds explaining why people voted to pull Britain out of the EU – these are invariably incoherent rants about brown people. Case in point below:

http://www.lbc.co.uk/radio/presenters/james-obrien/james-obriens-response-to-racist-brexit-voter/

Of course, this time of year the ‘keep Britain British’ rantings turn to all things seasonal. “Keep our nativity plays!”, “It’s Happy Christmas, not Holidays!”, and my favorite “We’re not even allowed to say Christmas’.* So it got me thinking, with ever declining attendance at actual Church services, what are these extra-British people celebrating?

*You are. Stop being ridiculous.

Now for Christians the world over, traditions are different. For instance, Coptic Christians celebrate Christmas in January (the original date before the Romans changed it to be nearer the Winter Solstice), and Advent traditionally is a time of preparation for the four weeks prior to the big festival. Preparations in this case meaning self reflection, fasting, and prayer that the second coming of Christ will heal the violence and evil in world.

Now, this doesn’t sound much like the ‘British Christmas’ being mourned for. So let’s have a look at some of the things that we actually do in the festive season and their roots.

So December 25th… not actually the wine making dude’s birthday. It’s certainly close, but was moved to be closer to the winter Solstice celebrated by Pagans across Europe (including Britain). The Solstice falls on the shortest day of the year, usually around 21st December and is part of the Yule Festival which lasts for 12 days. Now, that sounds familiar! 12 days? On the first day of Christmas my true love gave to me… a Solstice because that’s actually where the meaning of the 12 days comes from – Pagans celebrate family and the return of the sun from the Solstice until the new year.

That decorated Christmas tree has to be British, right? Christmas trees have their roots in many places (ba boom tsss), but the idea of bringing in an evergreen tree hails back to imagesCeltic Pagan traditions. Bringing in an evergreen was thought to bring in the spirits that lived in the tree into the warmth. Each night, the family would hand sweet foods on the tree as an offering to the ‘little people’. The Christmas tree as we know it was a German tradition, instead a variety of evergreens were used in Britain – Evergreen trees represent everlasting life and were a powerful message back then that the winter would not last forever and life would return.

Mistletoe_Berries_UkEver had a quick kiss under the mistletoe? This was an evergreen particularly revered by Driuids who went to great lengths to collect it. The reason for kissing beneath it? The unusual white berries represent the fertile semen of the life giving man which combined with the evergreen was a powerful fertility symbol.

And that wreath you’ve hung on your door: yep, you guessed it, has nothing to do with Christianity whatsoever. Again, the evergreen theme comes back here, but this time its about protection from evil spirits. Holly was thought to deter them with its spiky leaves and because Holy symbolizes the feminine with its red berried representing women’s blood,this also means protection.  When combined in a wreath, holly & mistletoe represent fertile marriage and the rebirth of the sun. With the wreath being circular, this also symbolizes the circle of life.

But what about the lights? There’s nothing more British than decking your house with enough lights to signal to the international space station.The-Brailsford-familys-Christmas-lights-display-in-Okebourne-Road-Brentry

But with the Pagans and Druids celebrating the return of the sun, Yule is a festival of fire & light. It is quite literally celebrating the return of the light. Candles were lit, oranges /apples were sliced, died, and hung in the house to represent the sun and a 5 pointed star was placed in a prominent position. For Jewish celebrations, this would represent the Star of David – in Pagan celebrations, the star represents the five elements. There are only so many symbols!

ah, but you wouldn’t get presents if it wasn’t for a proper British Christmas. This is very true – if you were celebrating the Christian holiday, then gift giving doesn’t feature. However, the tradition of gift giving and acts of kindness throughout the season are cast in the footsteps of our ancestors. This is the season where we celebrate new life and family and the tradition of gift giving was established long before the Romans rocked up.

So should we protect our traditional British Christmas? Of course. Anything which lightens the dark winter nights and lifts us up should be encouraged. To borrow from the Bard, Eat, drink, and be merry. But know where you traditions come from – be proud of your heritage, but know where it hails from. Britain did not start with the Victorian Empire – that is a dark time for our humanity (one of a number), but from a combination of different nations coming together and evolving as a whole. Sound familiar?

And to you my dear reader, I wish you a [Blessed Yule | Happy Christmas | Enjoyable Holiday | Happy Hanukkah | Excellent time off following Eid ] *delete as appropriate

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!