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

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#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.

Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.

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Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.

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Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.

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That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!

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So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.

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As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.

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Stop Being Sick, You’re Making People Stressed

I feel like a bloody salmon at the minute. As soon as I get my shit back together and start swimming upstream, I get to the top to either fall back down again or be eaten by an opportunistic bear. I am using everything in my arsenal to hold it together mentally and not have a proper poor me pity party over losing my ability to get out of bed or make my own cup of tea. I’m not one for self pity, or pity of any kind. I find it boring, especially when it’s me that’s doing it.

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Today we travelled back from Ireland – the sum total of 7 hours in planes & automobiles (no trains) and arrived home at 9pm spoonless and close to vomiting from pain.

Some months ago at my PIP interview, the guy who interviewed me turned solemly to Mr Geek and said “Watch her. She’ll put on a brave face then all of a sudden will hit rock bottom. Just watch her mental health.”. We shrugged it off.

Since being diagnosed, I have not mourned the loss of my physical capabilities outwardly. I’ve internalised it and it’s manifested in me not sleeping and I’ve subsequently grinched about it on here, but I’ve just got on with life because that’s what you do. I’ve not given up work, I’ve attempted to continue with life as normal, I’ve played down my pain levels whilst gently introducing everyone else to the idea that they need to live with a disabled person.

Occasionally, I am snappy with Mr Geek because he forgets that I can’t do something, or I ask him to do things for me to maintain this quality of “nothing is wrong” life. He is a good man & I lean on him. If anything, I snap at him to make sure the things that wind up other people in the house are done, or something for the kids. The things I personally want to do come much lower down the list, unless it’s pain related.

This evening, after yet another wonderful experience with people who claim to be accessible, I was not in the mood for a “you’re doing it wrong” conversation.

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But I was treated to one anyway.

I was informed by my Dad that over the past 9 months of my getting ill, Mr Geek’s stress levels haven’t just doubled, or quadrupled, but multiplied infinitely and that that was because of me. He’d “noticed” that I was overly demanding of Mr Geek. The exact phrase used was “I couldn’t put up with what he deals with”.

I explained that it’s not easy to lose your independence & yes I know I snap sometimes, but it’s frustrating when you cant do things you once could. I was cut short and told “that’s not his problem, that’s your problem to deal with”. This was followed by the offer of help from him & my mum to sort out caring for me (having already said, under no circumstances do I want them doing that –  I’d prefer to have an outside carer. ).

Now I know he meant well & has Mr Geek’s state of mind at heart, but that little thread of sanity I’d retained just snapped.

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So let’s all really say what we’re thinking shall we? Whilst we’re goibg for subtlety. You’re meant to get ill, go to the hospital and get treatment then get well again or die. Well, I’m not doing the latter so instead at best I’ve got another good 30 years of being in daily pain with more and more joints popping out and various organs prolapsing, & at worst add in my current GI & dysautonomia issues getting worse. That’s my whole lifetime again without sufficient drugs to mask the various lightening bolts and spasms, or eye-splitting headaches, then the possibility of tubes for food going and and out.

I try not to look at that big picture, because down that road lies maddness and a one way ticket to Switzerland.
This is much more manageable taken one day at a time with future plans being fuzzy in case they need to change. Taking small steps also allows for an inkling of hope that this might get better. One bad day can’t go on forever, or at least that’s my positive hippy dippy thinking.

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I’m aware that this is just another one of those cycles that you go through after becoming ill, but having been raised to not have a healthy outlet for my anger, I get to sweep this under the carpet and trip over the lump.I know that it’s actually OK to rage over the injustice of losing the life that you imagined you were going to have. I also know you get over the raging and become a human being for the other 90% of life. I know that Mr Geek gets it and encourages the blogging because it is fucking infuriating not being able to do up your own arsing bra.

What this doesn’t stop though is my overwhelming urge to go to bed and not bother getting back up. If it’s my problem then I’ll stop trying to make it easier for everyone else and deal with it my way.

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Just keep swimming…

As a general rule, when people do the whole “I don’t know how you stay so cheerful” speech I just look (and feel) uncomfortable until they’ve run out of metaphors. I just attempt to get on with life and splurge all my frustration out in my blog instead of at real people. But this evening I’m awake past a reasonable hour yet again and wondering if I just don’t sleep anymore.

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I’m not going to lie, despite it being half term and being at home, this week has been quite shit so far. We’d just got to a place where I could step back and assess the spoon situation and start looking at ways to maybe improve my health, then something unexpected and more than a bit scary starts tapping on the tank. Wake up fishy! Why are you sleeping?? Probably because I was blogging at 1am again.

I’m not my generally perky self right now. This could be related to having fully dislocated my shoulder last week which is still bothering me, this new work issue, increasingly dramatic looming threats of Ofsted and a general sense that I actually have no control over my personal standard of living. And there we have it in a nutshell. I am a control freak. I’ve lost control.

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Each morning I need someone to help me get up and dressed – I hate this, but it’s a fact of life. Right now, Mr Geek does this at a time and speed that generally suits my needs. What if he couldn’t do that? Do we have the financial reserves for a carer? Would the kids cope? If we did have to rely on a carer, could I be sure that I’d be ready for work on time every day? Would it be dignified or would I get yanked out of bed by someone constantly watching the clock and tutting at someone too young to be needing help from others?

My appetite is sporadic at best. I fly from nothing to everything and it’s not based on hunger, but my emotional state. I rarely eat from hunger anymore. What if Mr Geek wasn’t here to remind me to eat? He cooks the things he knows I will eat and that won’t make me ill. He sneaks vegetables into my soft, bland carbs. He accepts that me sipping on slimfast is better than nothing when my stomach doesn’t want to play. What if he wasn’t here to regulate my diet? Can I live on slimfast and gluten free pretzels?

Financially, we need me to stay working. We’ve looked at it objectively and are acutely aware that I’m fading fast in terms of stamina at the lower end of the year groups. Being in a chair doesn’t command the same type of authority as much as I used to and I arrive home exhausted. Where I once would put in another 3 hours of marking, I lay in bed on a heated blanket letting the oramorph do its thing. If Mr Geek wasn’t there to help me undress and crawl into bed, what would I do? I know the kids would help out, Tinypants has certainly helped me undress a few times and lives sitting in bed watching Netflix with me in our PJs. But how awful for them to not be shielded from my worst.

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We’d created a routine that had not only shielded the kids and the world from how bad things had got, but also me to an extent that I hadn’t realised before. Mr Geek does so much for all of us so discreetly that it isn’t until there’s the concept of him being taken away that it hits home.

It’s not just that I’d miss him (and I would, because he is my lobster), but this once fiercely independent woman actually can’t get out of bed without his help. Even if that’s because mentally, I’m not ready to let someone other than a very few select people see me naked. Of those handful, distance and health rather scupper any backup plans. Welcome to the inner selfish thoughts of the physically ineffectual.

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I wish there was a way to wave my magic wand and make everything better. I wish I could stick my usual fake smile on and keep going, but when Mr Geek being happy looks on rough ground, my lioness instincts kick in and I get frustrated that I can’t kick arses like I used to.

The previous me would’ve got angry. The current me just feels anxious and isolated.

The only thing to do is just keep swimming…

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Hair Today…

I have so much to write about & my loooong blog about last weekend away with people really is underway. But I’ve been meaning to tackle something for a while now.

I’ve spent the past 20 years + being defined by my hair. For the past 6 years, I’ve been a trademark red going from a subtle mahogany to outright fuck me post box red. I prefer the latter. Before then, there was a phase of pink & green combo (I was even on Google earth with that!), and my wonderful long dreads during university.

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Red hair has definitely been my defining feature, even going back some years. (It also dawned on me that I pout a lot at cameras, and was clearly raised on MySpace)

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My earlier dabbling with funky hair produced some finer moments of colour (National Trust excursions got some excellent looks. Especially as I was also making my own clothes back then).

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And the money that was spent collectively on eBay by me and Mrs Gypsytree buying plait in dreads doesn’t even bare thinking about (Although, to give them credit, Mrs Gypsytree still wears them because she’s irritatingly unaged).

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And now? Well, now to go with my standard dry & sort of brittle hair, I have a killer combo of the EDS making it more brittle and Gabapentin just making it fall out. There. In black & white. My defining feature is making a messy exit and I need to deal with it in a way I feel comfortable, and I want to get used to that way before its too noticeable…. ooh I don’t know, like asking for your wheelchair caster to be fixed because it’s not running smoothly & the reason for that is because there’s hair wound around the bearing plate. I mean seriously, wtf?

I’m not wholly sure what to make of this new development. I feel like it’s a bit vain to be fretting over my hair when I ought to be more concerned that my shoulder won’t stay in, or that my health insurance haven’t quite got around to sorting out the heart valve tests… none of this phases me, but going bald… won’t my brain get cold?

My choices are : to leave it and just go with it, but I feel self conscious as I seem to be shedding more than the cat which is gross; wear a wig, which I’m not wholly sure would look right although later on down the line I might, but I still have too much length in my real hair for that to work and bugger me how expensive??!?!; or finally, wear a headscarf.

I have a decent collection of scarves anyway that I use to keep modest at work (read hide cleavage) and also hide my neckbrace, so I did some research about different ways of wrapping your hair. I was keen to look as if I still have hair under there but didn’t want to opt for the hijab style covering (not for any anti-religious purposes, but more because I want my hair covered, not my neck). Eventually, I found Wrapunzel and their use of and tutorials on how to tie a tichel which is an orthodox Jewish head covering for married women (That’s now 3 religions I’ve encountered that encourage women to cover their hair). It appealed because of the elegant way the scarves were used, but also because of the focus on having a bun at the back which can be padded to make you look like you have more hair. It also needed to be easy enough for me to do without yanking my shoulder out again (like my over excited Uno! move on Saturday… That’s not what they meant by Uno Extreme apparently ), or simple enough for Mr Geek to wrap for me after he’s brushed it & stuck it in a sock bun as is our new routine.

This weekend was my first real venture out, and because of the positive. response from my lovely Mongooses, I’ve carried on and worn my coordinating tichels at school all week, including to a parents evening!  I feel much more confident with my hair wrapped. In fact, people have commented that I look healthier this week. This could of course be the result of having spent the weekend in the company of amazing friends where I let go of all stress & bad stuff, but hiding my ever snapping locks in beautiful fabric can’t be hindering it.

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Ok, so mainly I’m wearing the black one right now as it’s less conspicuous and having a bit of hair peeking out the front has warded off the majority of questions. Aside from the one young lady who yelled ‘do you have cancer?’ across the classroom. We had a chat about tact and dignity after that, but allowances can be made for being a bit of a knob when you’re 12.

There are definite upsides – any loose hair stays in the scarf, not on the floor; I can look healthier by adding colour; it actually protects my hair from breaking by supporting it; I can use coconut oil on my hair and I don’t look all lank and greasy;  I don’t have to dye it mad colours, just choose a new scarf…

… of which there are a few more coming. I’ve ordered a set of plain coloured hijab scarves and under caps which help keep the tichel in place. Amazon is a treasure trove of stuff sometimes.

So, watch this space. I even have a zebra scarf…

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Have you tried wrapping your hair? What style do you prefer? Do you have any tips?

It’s Crap Feeling Like Crap At Christmas

A friend of mine shared some very wise words this evening and I’d like to replicate and add to them here.

Whatever it is that made you arrive on this page, whether you have a long term mental or physical condition, the holidays can be a little less jolly. The twinkly lights, the parties that you can’t or try to attend but feel on the outskirts, the social or financial worries, any or all of these can feel or appear worse this time of year because we’re meant to be happy and jolly.

For me, it’s Christmas eve at 12.30am, so technically Christmas, and I’m laying in bed with a tens machine strapped to my buttock in the wild hope that it will have the same effect as it did with my shoulder last night where the muscle twitching over the course of a few hours gently manipulated my subluxed joint back in (Whoop! ). Pain sucks. It makes you tired and grumpy and do you know what? It’s OK for you to feel sad about the loss of normality, or the lack of involvement, or just that it hurts. What is not ok is to feel guilty because you can’t put your chronic condition in a neat box and hide it take life easier for others. Invisible Illness can be tough for families and friends to understand and you may find you get a few extra “can’t you just…”, or “have you tried…” comments. People have good intentions at heart.

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Your mental health is just as important at Christmas as it is the rest of the year. If you need to talk to someone & you’re in the UK, call:

Samaritans – 116 123
Mind – 0300 1233 393
Rethink – 0300 5000 927
If you’re at risk of harm please call 999.

Other useful numbers include:

Refuge – 0808 2000 247
Shelter – 0808 800 4444
Police non-emergency – 101
NHS non-emergency – 111

I hope you enjoy the holidays, but if you need help, please reach out either to the professionals above, to family & friends,  or just the many online communities who provide a huge bolster.

However, if all you needed from this post was a refill of smiles, have this Christmas squirrel.

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