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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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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 – No 2 – Why Bother?

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. Number 1 shared some tricks on making it through the day in one piece, or at least in as few separate pieces as possible. This week, I’m focusing on mental health.

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). At my PIP interview the assessor took Mr Geek aside and said bluntly “keep.an eye on her, that brave face is going to slip soon & she will crash and burn”. PIP or Personal Independence Payment is the UK disibility benefit to enable us to pay for care & mobility aids. It has a very bad press & the process tested my mental health to the absolute limit. I lucked out with my assessor who was kind & fair and was so jaded by the system that he just asked me straight rather than trying to trip me up. I thought he was being dramatic when he said to look out for my mental health. He wasn’t. 

So here’s some pieces of advice on mental health in the workplace when you have chronic pain. 

1. Every Little Helps

It’s very easy to feel like Sisyphus forever rolling that boulder up a hill & getting nowhere. As teachers, even after years, we have this idea in our heads that we can create a community of well behaved & engaged kids. That ideal will never go.

When I first used my wheelchair at school, I was scared that it would impact on my authority and the kids wouldn’t behave. Quite the opposite. It’s allowed me to be softer with them because I’m in less pain, so have more patience, and they copy my more happy style.

It’s not all sunshine & rainbows though. This week I’ve encountered all sorts and it’s worn me down. We’ve had uniform “adjustments”, monosyllabic grunting  (that drives me up the wall), swearing, use of the words “retard” “gender bender” “gay” “mong” (can you say detention with an essay researching the history of why that is offensive?), graffiti, large items thrown through windows, parents complaining that I’m horrible. I’m painting an awful picture, but this is not business as usual. 

I work in an outstanding school. Not because Ofsted say so, but because it’s a place I want to go to. I gladly increase my pain levels to spend time with the kids & my colleagues. And you can bet any amount of money that each of those issues will be dealt with in a style similar to Thor’s Hammer.

Yes, I’m sick to the back teeth of kids talking to me like something on their shoe, but what they don’t realise is that I’m grittier than them. They will pass this course if I have to drag them kicking & screaming. I secretly like them. Even when they’re making my life hellish.

And that’s my secret weapon. They don’t need to like me, they need to know I have their best interests at heart. They initially think I’m evil. I set all this homework and demand proof that they’ve revised. Then had the audacity to set a test for year 11 on Tuesday. They got their results today & the majority did wonderfully. I gave them proof that their hard work paid off. I won.

2. It’s not personal

Meet the teenager who greets you with “let me sing you the song of my people: that teacher hates me”. The song translates to a number of things:

  • “that teacher set me work that I don’t immediately understand and they won’t do it for me”
  • “That teacher won’t let me sit with my friends and chat”
  • “That teacher doesn’t understand why I’m struggling in class”


In the 3rd instance, yes, we’re in the wrong. And we are not infallible and do miss things. But when those complaints come in because you set high expectations & push for independent thought  (and they will), it’s not personal. Not for you as the teacher. It’s hard for children (and nd adults) to adjust from being spoon-fed answers to being investigators. It’s natural to dislike the person who is pushing you out of your comfort zone. I hated my programming teacher. As he strode around the classroom proclaiming we were all useless & a waste of his precious time so no he wouldn’t lower himself to giving us the answer! We resolved to make him look stupid by proving him wrong and aceing the module. We were played. Looking back, he was one of the best teachers I’ve ever had.

I’m not suggesting his style of teaching. But be firm. Follow your behaviour guidelines. Write home. Know that you are the target for their fear of failure & self doubt.  And by knowing that, you also know it’s not as personal as there words suggest.

3. Cake Monday

Make time for your colleagues. They are your support network. This year is arrived on our first day back with a home baked black forest cake and declared Monday breaktimes “Cake Monday” where we all stop, Drink tea, eat cake, and most importantly talk about us (not work, but what’s going on with our lives). That 20 minutes each week allows us to touch base & gauge if anyone is wobbly. Case in point being my wobble over going to hospital in October – I talked about my fears & whilst they can’t fix it, they are keeping it low key with questions about it banned unless I bring it up.

4. Mark your work!

Err how is this good for mental health exactly? Well, set a routine with books. Collect then in each week & leave a minimum of one positive comment in there. Where they need to improve, ask a question instead of telling them.

When you write down positive things about your class, you feel more positive towards them. This is especially helpful for new classes, or ones you find challenging.

My favourite right now is to buy packs of DC & Marvel stickers which go on the cover of their books if they show effort or grit or self control. These also equate to housepoints, but they love my silly comments of “super effort” or my personal favourite “incredible homework ” accompanied by a sticker of the hulk.

4. Ask for help

Do as I say, not what I do. I am so bad at this & am paying the price. My job this weekend whilst away is to put together a list of tasks that are causing me pain, or issues at work.the reason being so I can propose a change in my support from Access to Work. I’ve reached a stage where I’m aware that I’m overstretching my physical capabilities and need a support worker in some capacity. Travel in a converted van with my wheelchair strapped down is painful & noisy to the point of tinnitus.

As part of this, I used an accelerometer on my phone to measure some of the bumps over my 30 minute journey into work. These show a reading in m/s2 (meters per second squared)

Remembering that travelling in a wheelchair means you are sat bold upright thus placing the ptessure of any bumps directly onto the spine: at it’s highest reading, this was a 3g pressure downwards. That’s on a par with a roller coaster. This could explain why I start each morning with tea & painkillers.

This kind of data will help me to legitimately ask for help & not be seen as moaning. It’s unlikely that’s they would, but I’m my head I’m biting the hand that feeds me.

So, a bit of a long rambley post which I guess is fitting for looking after your mental health when you’re dealing with life & chronic pain. 

Until next time xx

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.

My September 2016 Glossybox! All that glitters

Spending a large percentage of your life feeling like crap requires things to make you feel more human. In my world, this includes my monthly surprise in box form.

Note: I am getting no payment or freebies for this review. This is purely a fun thing for me to do when my box arrives! As part of my account, I am given a code for you to get 20% off a box by following this link (this does earn me points towards more boxes)

This is my third month of receiving a Glossybox. A surprise box of goodies that costs me £13.50 (because I pay each month – it’s cheaper if you buy a subscription). July was brilliant, August’s box was a little dissapointing aside from a brilliant eyeshadow pallette, but September has returned to redeem itself.

The box is usually pink, but this month is red to match it being the Red Magazine choice box.

The items in my box included a full size nail top coat, lip stain pen, & eyeliner pen. There was also a sample mascara, a face mask, & a gel face mask. If you wanted to feel pampered, this is your box.

The first big item was actually gifted to my mum. She’s growing her nails back after having acrylic nails removed and is really conscious that her nails stay attractive. I, on the other hand embrace my eccentric academic role with short, unpainted nails which are usually decorated with ink stains. As a full size item, this will last her ages and she tried it out straight away. 

Would I buy this? Not for me, but mum loves it, so it’s on her list!

RRP: £7.99

Next up was the smokey eye pen from Rodial. As an aging goth, I’ve had a love / love relationship with smokey eyes. In my current state of looking a bit like the corpse bride, they have the added bonus of fooling people into thinking you intended to look like this. Since the 90s (yes, I’m that old), a kohl pencil & eye shadow have been my staple eye kit, but this plays the part of pencil without the stabbed in the eye bit & stays smudged without fading. I’m planning on testing this to destruction during parents evenings as I attempt to pass as a professional human from 8am classes through to 8pm end of parent chatter… 

Would I buy this? Hell yes I would! Even at this price.

RRP: £17.00

The final full size product was the pink tint Lip Marker from GOSH. Yes it is a Lip stain. No it is not a highlighter.

As weird as it felt using what appeared to be a chunky felt tip on my lips, this stuff is lovely! The colour is very pale and just left a hint of pink whilst leaving a nice moisture & gorgeous cherry smell. (It tastes nice too… not to eat, but anything you put on your lips will be tasted). I’m not a huge fan of lipstick, so the tint this created was perfect for me.

Would I buy it again? Yes. I’m already looking for the other shades!

RRP: £5.00

Next came the samples. The first one is a mascara from Too Faced which boldly claims it’s Better Than Sex. It’s a sort of half sized sample, but still with the b rush that helps shape lashes. I’ll admit that mascara is the one thing I can’t go without makeup-wise, but whoever declared this better than night time naughties needs to get laid because they seem to have forgotten where a jolly good screaming orgasm comes in the order of things. (For reference, not below a rather nice mascara that doesn’t run down your face even though it’s the hottest day of the year & you’re in a classroom with 30 shouts kids and no aircon).

Would I buy this? Maybe. I’m still very taken with the mascara from July’s box.

RRP:  £19.00

Finally, two face masks were included in my box this month. The first being a Body shop sample & the second a face covering that made me look vaguely like a serial killer. This claims to moisturise your face for up to 5 days through the power of Korean technology. 

As someone who uses exfoliating washes & masks with salicylic acid in anger (with frankly super results on pores & hormonal breakouts), I was keen to find out what the hype was all about here. I’m saving this one as a Sunday night treat in the bath before going back to work. I’m not in desperate need of deep moisturising as the one perk to EDS and it’s defective collagen is lovely soft skin… that tears, and takes ages to heal. Maybe I do need that mask after all!

Would I buy it? I’m not sure yet. But may even for an occasional treat.

RRP: £7.99 per mask

Overall, that was a rather exciting little package and certainly stuffed with enough to keep the September back to school blues at bay. And if they do raise their ugly head, I shall just hide behind my smokey eyes!

The Glossybox website is here & let’s you order a 1 – 12 months subscription. Or click here to be referred by me & get 20% off of your order.

Note: by clicking any of my Glossybox links, you get 20% off your first order & I will earn glossy dots which I can put towards free boxes. As above, these are my honest & done for fun reviews & I am not paid for them.