Sleep is For The Weak

I watched an interesting and yet terrifying documentary on Netflix today called Take Your Pills. If you’ve not watched it, please do. It’s a worrying window into how kids cope with the academic pressures ladled onto them. There were also so many ambitious adults on there who are taking Adderall to stop burnout. Some had progressed to taking low doses of LSD, with stories of people in their 30s having exhaustion induced seizures and being called / emailed at the hospital for work they hadn’t finished.

(For point of reference Adderall is an ADHD drug similar to ritalin – both are amphetamines, but adderall is closer to methamphetamine)

Ironically, here was me watching this in bed in my pyjamas at 10am on a Wednesday morning. I’ve worked every day for the past 14 days and by Tuesday morning found myself wrapped in a blanket at 7am staring into my mirror instead of getting ready for work, after another “fun 4 hour sleep” unable to put makeup on because I was so tired & woozy. Technically I should have called then, but I felt too guilty to call in sick. My pain levels exhaust me, but I don’t want to “use them as an excuse” – the internalised ableism is almost audible around me at times like this.

As my workload went up, so did my pain levels amd my ability to cope dropped – I already have a heafty painkiller routine, but the morphine levels have risen recently. I had a bit of a stark awakening when just before a stream on Monday my shoulder popped out (fully dislocated with a torn muscle). Mr Geek returned the joint to it’s rightful place & I asked for “some morphine please”. This sparked much hilarity from my friends on camera who witnessed a totally calm woman politely request strong narcotics. From most people I’d get upset, except I know they intrinsically get this pain threshold thing – I don’t scream & wail because I’m not scared. It hurts like a motherfucker & still does, but I know why and how to solve it, and precisely how bad it will get. Staying calm stops my muscles going into spasm & helps the joint back in. Much love to Jo & her meditation techniques for this.

Anyway, knackered lots of pain etc. so in bed on my “day off” before tutoring starts. It occured to me that I was utterly confused by the concept of not being able to focus – these people wanted to push through the tired & work faster, longer, better. And were using amphetamines to do it. They are literally taking drugs to have the unpleasant side effect of my adrenal dysfunction. WTH?!

I made a list of things I’ve achieved over the past 7 days to show the effects of skidding through life in constant fight or flight:

7 days of stuff I’ve done

Learnt how to code with basic Unity & Cardboard VR

Made & released a simulation App for my department’s charity den (go look & download to raise money for our local homeless shelter!)

Written a draft short campaign for the roleplaying group I play with (3000 words & counting) based around Tudor / Medieval Sussex folklore.

Created ink drawings for a couple of characters.

Scruffy witch with long teeth stands holding a fish

Ginny Greenteeth – river hag, notorious for dragging people into water.

Joined in 2 roleplaying streams totalling a collective 6 hours (no regrets!)

They’re not on YouTube yet, here’s one we made earlier!

https://youtu.be/YcDgJos28sE

Created an ink drawing of one of the characters from our game stream.

Drawibg of a Young man in a long coat running with a flaming torch in one hand and a dagger in the other

Lamb the SaltGypsy from our Salt & Thirst Campaign with BloodThirsty Puppets

Worked at my teaching job for 32 hours + a few evenings of marking

12 hours of online tutoring

And a blog post.

….

Now in a list, I looked at that and thought “wow! I’m a fucking superhero!”. No brain, you are not. You are skimming years off of your life by not slowing down even when limbs are literally falling off and you’re crying from being tired. What my brain is failing to mention is:

The sketching is done at 1am when I can’t sleep because my CRPS is playing up & my leg feels like its on fire

Much of the middle of the night suddenly awake cold swears stuff is due to panic dreams where I can’t escape from a fire. Subconsciously I know this is because the alarms broke on Friday & we’re just waiting for an engineer & there’s a plan in place, but I don’t like feeling vunerable & not in control. Being nervous = extra adrenalin.

The streaming is my socialising. I do this from bed because sitting in a chair is too painful after work. I’d rather cut a boob off than not join in.

Same goes for tutoring. Big pile of pillows in bed. I enjoy it & it’s paying for the holiday which the girls & Mr Geek deserve so much after giving up life to accomodate me all year.

I loved creating the app, but the all consuming fear that I’d let people down if it wasn’t done meant that by Sunday morning I was covered in hives (I still argue that it was worth it)

……………………………

So the brain & I had a serious talk having been placed into a salted bath by Mr Geek who now just looks at me like a concerned pet owner does at a cat that keeps pulling it’s fur out.

I can’t keep going where the adrenalin rush pushes me. I can’t shrug off every conversation where Mr Geek tells me to rest more and stop working, or at least saying yes to more work. I can’t survive on less than 25 hours sleep per week.

Something has to give, and with a leaky heart valve we’d rather it wasn’t that. Also, that’s not a very rock & roll way to go.

The brain needs to stop flooding me with adrenalin and I need to be sensible and take a few days off. I’ve cleared my diary for the whole 4 day Easter Weekend, much to the dismay of my tutees (downside of self-employed tutoring is they genuinely believe I’m on 24 hour call).

  • Even if it snows, we are going to a National Trust garden.
  • I’m going to sit in Mr Geek’s lap, tangled up together with all the tech off and read for pleasure
  • I’m going to paint with TinyPants on a hill.
  • I’m going to watch sharknado with beanpole

I’m writing this downas a line in the sand. As a very loud, but wise man who never followed his own advice once told me: 49% work / 51% family.

– work emails are no longer on my personal device

– My tutoring books are closed

– Working on a Sunday is now emergencies only

– Anything past 7pm needs to be completed from bed

That seems like a reasonable step towards not breaking my head.

Advertisements

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 Most Accessible Mountain in Europe 

Four generations ago, my paternal family made a long journey by foot to Canada from Germany. They originally lived in a small village near the top of a mountain in the Black Forest bearing their name. Until I married Mr Geek, I too was a Feldberg. 

I don’t know a great deal about the background of my paternal family and with the magnifying glass of a disabling genetic condition, I grabbed the opportunity to connect with my past with both hands.
Feldberg stands with the highest peak of the mountains in the Black forest. Unlike the mountains of stereotype, it’s covered in trees until you reach the peak where instead of rock & bare nothings, it’s grass; as the name suggests “Feld-berg” = “Field-mountain”.

To get to the peak, you can walk up the wooded, or meadow pathways. Or, like us, you can take the Feldberbahn to the top. In the summer months the ski lift chairs are replaced with gondolas which are not only enclosed & safe for children, but accessible for wheelchairs! They even stopped the cable cars & popped on a ramp to help me in.

It was a beautiful ascent even if the weather was cloudy & at 2200ft at the entry to the cable cars, flipping cold! (13° as opposed to 23° at the hotel). By the time we reached the top, we were a little over 3000ft above sea level and the wind let us know that we were on top of the world!

From up here, you can see across the Alps and breathe in the smell of the forest. Someone recently suggested that no one likes for trees & would want to protect them – well, take a look at this view & choke on your words.

It’s difficult to genuinely give an idea of what it was like to be up there, but if you have (or want to download) the free Google Cardboard Camera app, you can download my panorama photos here (The new Cardboard camera let’s you take a photo in 360° but also records the sound to go with it to enhance the experience)

By the Feldberg viewing tower
By the monument

Unfortunately, the Tower which contains the Ham Museum (yes, you read that correctly) is not wheelchair accessible, so I sat in the sheltered of the entrance. Whilst I was sitting admiring the view, the clinking sound of bells arrived and holy sound of musicals, a herd of billed cows ambled to the grass at the top of the mountain & stared at the visitors with the look of disinterested confusion only a cow would give.

Taking the cable car back down the mountain, we went in search for lunch. Walking past the more touristy places & gift shops around Hotel Feldberg, we found a much older guesthouse just along the road. We were very pleased to have ventured a little further as we were greeted by the owner who happily made space for us & my chair. It was enormously inaccessible  (I had to only hope that I didn’t need the loo as there was no way I was getting in there!), but oh my word the food was incredible!

As someone who doesn’t fate well with onions, or heavy meat dishes, I’m racing through my Omeprazole at a rate of knots, but the Bavarian meatloaf with roasted potato was soft & tasted beautiful. Vaguely like posh spam. My waistline is suffering! I’m even able to enjoy the local beer as most varieties are available as alcohol free & taste just as good! This is great news & means I can sip away & not interfere with my daily doses of poison.

Sadly, our visit was cut a little shorter than I’d hoped as I was feeling lightheaded & exhausted. A combination of altitude, carbs, pain, and overdoing it kicked me up the arse and I lost the ability to function any further.

After a final loo stop & a dose of painkillers, we headed back to the car as it started to rain lightly with me making noises about wanting to visit the Feldberg schnapps museum on the way home….

… I woke up with 5 minutes to go before we reached our hotel. Ah. Bugger. However, I went to bed tonight contemplating where to hang our Feldberg cuckoo clock. I may not know any more about our family, but I do have an image to attach to the spattering of stories I have heard.

#spoonie #blogs about #chronicillness (hashtag city)

See that? That’s my final spoon flying into the distance. Off it goes along with my ability to appear like I’m coping.

A year ago, I said I’d be happy if I made it to Christmas with my job and life in general in tact. I pushed for medical help & I’m the end paid for it as it was not forthcoming locally.

At Christmas, I was determined to make it to the end of the year (academic, so July. I know, us teachers even mess with the calendar). Since then, the liquid food is almost gone & I’ve gained most of the weight I lost (meh, would’ve preferred not to, but health over flubber). By my own criteria in two weeks I will have won. Made it to the end. Two short weeks currently feels like a lifetime & I’m not wholly sure I’m going to get there.

Let me tell you about EDS fatigue. I’m writing this whilst I clock watch because in 15 minutes I can take more painkillers. I’m exhausted, but every time I lay my head down I’m jolted awake by the pain in my legs & shoulder… & neck. I have a migraine brewing at the base of my neck & pushing against my eyeballs. 13 minutes.

I took on too much this week (normal teaching + new form induction for year 8 + year 5 taster day + parents evening). Tomorrow is Friday, but also sports day #2. I’d sent a concerned email to PE about my ability to trek across the field and through trees in potential rain to the athletics in my powerchair, but was assured that the field was totally accessible and the weather would be “hot and sunny”. Actually, it was chilly and drizzly and whilst the powerchair did make it slowly this was not without having my bones shaken out of place to a point where I took oramorph at school for the first time in several months. I have to do this again tomorrow. The fear of adding to current pain levels combined with zero spoons = no sleep and rising anxiety levels.7 minutes.

The question should be asked at this point, why don’t you just put the blog down and get some sleep?

Well, here’s the thing about fatigue and EDS. Imagine you got up at 4am (bleary & a bit confused). Now stand up holding cans of beans in each  hand – raise your arms & keep them there… how long? Well, all day. Gravity isn’t working in our favour – where connective tissue fails, simple lifting of your own arm can be exhausting and eventually painful.

Now you have another tin strapped to the back of your head – tilt your head back and look at the sky. Same thing – All. Day. Spines are there to keep us upright. Unless the connective tissues are lax meaning that sitting up straight, or holding your head up is akin to doing situps all day. I wobble between focused controlled posture & slumpy withered flower.

Finally, get home and drink three cups of coffee before bed because your autonomic system is wrecked and thinks it is bloody hilarious to release a shit tonne of adrenalin into your system as you try to rest. Couple this with overnight hives due to mast cells chucking out histamine in reaction to the drugs that keep you from becoming one of the zombies from 28 days later through sheer pain levels, and EVERYTHING IS JUST PEACHY.

So yeah, when I grit my teeth and sing song “good morning! Yes I’m fine thank you. Nearly there!” at you in the morning, I’m doing it to hide the rocking quietly whilst I do mental battle of “I can’t do this anymore…” with the “yes we can!” chant missing in action. 

Times up. The cavalry has arrived.

Let’s Talk About Sex Baby….

A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room staring at us with “that look”. The joys of Ehlers Danlos Syndrome mean that no part of me isn’t stretchy to some degree and throughout my life, that has had some interesting sexual impacts.

My back pain began in my teens – I remember walking around Sainsburys with my mum doing plies holding onto the shopping trolley to just take the pressure away from my lower back. It was also around this time that I lost my virginity and had the weirdest conversation. Initially, I took it as a compliment that my then boyfriend asked if I was sure that I hadn’t ‘done it’ before. I was clearly a pro…

image

But then he argued that it should be tight and hard to ‘get into’ a virgin & I wasn’t. As first times go, this was at least memorable if not massively offensive. For reference boys, this is shit pillow talk and pretty much sealed the deal for me to piss off and date his best mate. 

I spent a good deal of my teens & early 20s tired (I once fell asleep on a base speaker in a club) and back pain continued to twinge. But it really went for it in my early 20s & more so when, aged 24, I carried Beanpole to almost term (she arrived at 35 weeks after medical intervention to keep her in, 16 months later TinyPants plopped into the world at 32 weeks in a similar way). Back then I had “it’s just back pain” & “all women get SPD”. What I didn’t know was that my tendons were stretching through the magic of hormones & had no intention of snapping back up like youthful elastic, preferring the more relaxed overcooked spaghetti look.

The ligaments you see before you hold a woman’s pelvis together. These are strong rope-like connective tissues made up of collagen (That’s the glue that holds us together, and also the tissue that is affected in people with EDS). As we get older, these can get tighter meaning that we lose our range of movement. For me, this means where I could once lay on my back and place my feet square on the floor touching my shoulders, I can now only lick my own feet. Excellent party trick, superb pulling technique, utterly inadvisable.

image

So, why the image? What has this got to do with sex?

image

Well, with progressively looser tendons, ligaments, & muscles, I caused a number of interesting injuries to my pelvis & spine over the years & by the ripe old age of 36 have racked up herniated discs at s5/S, L4, L3, T4, & C5 alongside having dislocated my pelvis itself and dislodging the SI to an extent that the joint that shouldn’t move does in face shift on a daily basis. Most of these have been treated using rest, anti-inflamitories, and over a decade of opiate based painkillers. I’m thankful for this, having reacted badly to facet joint injections and with surgery not advised with EDS due to complications & healing time. The down side of this is nerve damage. I no longer have real sensation in my feet (as noted when I had to be told that I just tipped boiling water on my foot this year!) and my pelvis is equally affected in the no sense, no feeling category.

image

It’s been a gradual decline, but the past 12 months have brought about a requirement to be aware of the sensation of needing to pee which isn’t always obvious. It’s either all or nothing, and by the time I am aware I need to go, it’s often at critical mass. To my utter horror, on a few occasions my body just hasn’t cooperated in being coordinated enough to get onto the loo with pants down pre-release. This is the grim indignity of a body that resembles a car that hasn’t been MOTd in years.
The bladder isn’t the only internal organ affected by EDS that requires evacuation  (look away now readers of a delicate constitution)… a combination of being stretchy & taking opiates has equated to an interesting dance with IBS. There’s very rarely a nice happy regular medium, but more disconcerting is what once used to feel crampy or bloated, now feels nothing. There is essentially no urge to go aside from a thought process that says I ought to. It’s a set of symptoms that once sent my doctors into apoplectic frenzied activity and now appear to be a sign that I’m still holding things together by managing them.

The one thing that hasn’t been discussed with my medical team (and this post is partially me getting my thoughts in order for bringing it up at my appointment tomorrow with Pain Management) is the lady parts.

image

Mr Geek & I started off our relationship by necking on his bed & pretty much only left it for essential food & more wine for the next few months. This laid the foundations for the following decade of lusting after each other. He can still make me go all wibbly by biting my lip, or just stroking my cheek. Suffice to say, sex is quite high on our list of marital priorities. So when I began to struggle to enjoy it quite as much as he was, we started to worry. Initially, we put it down to pain levels (Although, actually a bloody good orgasm is a massive pain reliever), and then the cocktail of drugs, but eventually as my legs showed more signs of losing feeling and the ‘saddle’ area around my perineum felt numb, we realised it was nerve damage.
So how do you continue to skew the mean average marital sex figures when you’ve gone from multiple porn like orgasms when he so much as looks at you to struggling to maintain lubrication let alone pull a Meg Ryan. Well, just like every other aspect, we adapted things:

Not everything in life has to be home made & the same goes for lubricant. Water based lubes and my skin don’t mix, but a liberal application of coconut oil (approx. £5 in Tesco / Sainsburys, or posh stuff from Waitrose gives the added amusement of looking them in the eye as you buy it, knowing damn well that this is not for plummy middle class baking, but will be making your genitals taste tropical!) not only works a treat, but smells great too 🙂 It also has a beneficial impact on the tiny tears that I’m prone to where my skin is paper thin.

We’ve had to start again with my body to work out how to get the engine going again. Picking up some good vibrations with a padded vibrator will often do the trick (if you have loss of sensation, do not use a hard vibrator – one word : bruising). Don’t feel bad about needing some individual time with this initially. When you’re already falling apart, navigating 2 sets of overexcited hands can cause things to get lobbed across the room in a strop… whereupon the thing is still quite literally in motion across the bedroom floor. Cue laughter.

Physically, the earth might not move anymore. The muscle contractions remain, as does that lovely flow of endorphins, but what once was a Thunderclap is now muted to a muffled rumble. I won’t pretend that it isn’t upsetting, but I’d rather a rumble than just rain.

Keep the light on. When one sense is dulled, another takes over, and with 90% of my old moves far to painful to attempt, there’s nothing series than seeing Mr Geek get undressed. I’m thinking less with my crotch and more with my mind (yes, women also make decisions using that brain in their pants).

Switch positions. Use every pillow known to man. Make the most of that adjustable bed. If it doesn’t feel good, don’t do it. We’ve surprised ourselves by getting into easier positions for my joints, then discovering that… OMFG keep doing that!

image

With all these adaptations, we’re coping well, but there’s still a little voice in my head suggesting that I mention it at pain management and see if they can suggest other ways of adapting our sex life, or even if there’s some magical way that I could resurrect my clitoris Jon Snow style.

image

Live to work, or…

At the start of the week I commented to the lady who drives me back & forth to work that this term doesn’t feel as long as last. After a week of migraines, popped out shoulders, & cold limbs, I take it all back. I’m not wholly sure how I’m going to drag my wobbly aching carcass through another week of this. EDS has once again knocked me flat on my arse. My current days are going something like this:

6am
Mr Geek wakes me up by stroking my back, then helping me stretch out & rubbing my feet & legs until I can tolerate using the crutches to get to the loo. Then he gets out my clothes and helps me get dressed (all the while discreetly checking that I’m not going to topple over from a limb giving out or just plain potsy fainting).
Right now, mornings are hard. I wake up feeling like I’ve been hit by a bus & am making it to work not through guts & determination, but because of Mr Geek physically moving me through my morning routine & fear of losing my job. Even the idea of cutting my hours puts me on edge – despite the potential for feeling physically better and actually getting to spend some time with my offspring, not being full time makes me more dispensable & if Mr Geek stops working from home, there’ll be zero buffer against people talking at me (no rest potential there – may as well be herding kids).

6.30am
Sat on the side of the bed, Mr Geek brushes my hair into a sock bun whilst I attempt to plaster my face in enough self-tan moisturiser, concealer, eyeliner, and contour the living crap out of it until it submits to looking human. Final touches – my headscarves to protect my hair from breaking, because although it’s looking healthy again, it starts matting & breaking the minute I leave it out.

image

Mr Geek saves the morning yet again here surrounding me with my baskets of morning drugs & make up. He doesn’t leave me until everything is in reach.

7am
Down the world’s slowest roller coaster to my chariot awaiting me at the bottom of the stairs. It’s a work day, so it’s The Beast. The powerchair is necessary as 8 hours+ of self propelling is arm rippingly painful.
It’s weird, the powerchair is built specifically for me, but I’ve come to resent it. I’m passive in it. In utter contrast, Leonardo (my manual) is an extension of me.
As I get into the kitchen, Mr Geek hands me coffee & hot milky weetabix which perks me up enough to kiss the kids goodbye and wheel myself into the taxi and off to work.
I don’t want to be leaving the house right now. I want to crawl back into bed & rest my bones that won’t hold me up. I want to cuddle up to Mr Geek and giggle over my snap crackle and popping joints when he cuddles too tight. I want to sleep. But, instead I put on a big smile & say good morning in my Oscar winning performance as girl who is coping.

7.40am
Off to work. Bones rattling. Pain levels increasing. The chair is strapped down in the van, but I am not. I wobble freely over the hill wincing at the cattle. We’re both headed for vets soon.

image

It's not a terrible view on my commute

8.15am – 4.30pm
Holy hell in a handbasket. There’s a blur of 100+ students, marking, worrying, patrolling of corridors. They ground me & remind me that my little whirlpool of pain isn’t the whole world. There’s other shit going on & if I don’t vacate my pity party right now, I have a shit-tonne of kids to dissapoint. And that’s not going to happen. They couldn’t give 2 hoots if I’m on my feet, in a chair, doubled over in agony, they need entertaining & their little sponge minds filled with the stuff I’ve got. Life goes on.

There’s also a rising tang of pain that exudes from my hips and hands and across my body. Painkillers and work don’t mix well, so let’s suck it up for a few more hours…

image

5pm.
Home. Kiss kids.
Lay on sofa. Oh God my head / joints / back / [fill in the blank].
Nap.
This is probably the most restful hour of sleep of the day. It’s delicious.

7pm
Wake up to Mr Geek trying to talk to me and waving food in my general direction.
Then straight to bed & set the bed incline to sat up with raised feet whilst blogging / watching TV until the evening drugs kick in enough to let me pass out again.

To sleep. Per chance to dream.
I wish I could sleep.

It’s a miserable way of looking at my days, but it’s my reality during term times and it becomes a harsher reality as the term goes on. This half term is 7 weeks, as is the next one. Most holidays I’ll keep working from home to stay on top of things, but this half term I’m planning to rest.
I’m not wholly sure what the long term goal is now. Right now, what we’re doing is just about physically surviving the week, then treating every weekend like it were a tiny holiday (and getting mightily frustrated if time is ‘wasted’ not making the most of our down time. Ironic eh?).

image