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.

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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.

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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…

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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?).

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No Sex For US Please. We’re Disabled.

This time tomorrow night Mr Geek & I will be all tucked up in a our new bed. We waited for the sales,  then used the back payment for my PIP to buy an adjustable bed so I could raise my feet at night & sit up when needed. In order to do this, we had to by 2 single beds and have them fixed together with a bracket. Of course what this meant was were going from a double bed to a superking size (6ft wide).

We know that having an adjustable bed is going to make a massive difference to my (and consequently, his) quality of sleep. But this brought up 2 very interesting points:

1. Adjustable beds aren’t normal size in terms of length, so require “special” bedding. Of course, because it’s linked to disability, the price tag rockets. Being disabled is expensive. Even a clean sheet to sleep on costs more. This irks me.

2. People make assumptions about our relationship now.

“Why not just have them as single beds?”
“You should have single quilts, not king size. Then you have one each.”
“It’ll be nice having a bed to yourself. Then she won’t keep you awake when she’s having a bad night.”

All of this roughly being translated as “you’re not in a proper relationship where you have sex anymore”. Well more fool you bedding judges. We may have 2 single mattresses, but we have a giant duvet to share because being disabled doesn’t automatically stop your libido. Sure, we have to make adjustments – dislocating a hip during orgasm is a sure fire way to put of most partners. If anything, losing my and being in pain has created a stronger physical bond as we spend more timobilityme soothing aching muscles & bones with warm oil & stones. This requires nudity. And, well…

For those finding themselves sinking slowly into reduced mobility (or careering down like an out of control skydiver like I did), all is not lost in the boudoir department, but I’ve learnt a few things this past year.

If it isn’t comfortable, don’t do it.
You might have been able to reverse cowgirl with full yee ha’s last year, but if your body is complaining, you’re not going to.enjoy it. You shouldn’t ever feel compelled to do something that you don’t enjoy. If it’s not working for you, try something else.

Relearn how your body works
You’ve been presented with a body that stopped functioning as you expected it to. With such frequent subluxations,  I discovered that an orgasm in the wrong position landed me with my pelvis out & a pain flare through my back for days. So we went back to basics.
On your own, or together, investigate how things feel now. What I’m suggesting here is masturbation. There, I said it. It’s far more gentle than full penetration, and allows you to use mindfulness techniques where you are aware of where your body is as things start to feel nice.

Use props
Maybe not the ones you’re thinking of. I’m talking wedges and pillows here. Create your own special sexy nest where you’re not having to support yourself on painful joints. There are plenty of tips where a pillow is suggested under the hips – take this a step further by supporting anything that needs supporting. Gym ball… I’ll just leave that idea hanging there for you.

Massage isn’t just medicine
When we receive (and give) massage, the neurohormone dopamine is increased. This not only improves our mood, but makes us cope with pain easier. Relieving pain before even suggesting any other naked fun is a good plan in itself. Using trigger point massage (aka pressing on those painful muscle knots which are generally found around the shoulder & neck) stimulates the release of endorphins – the same hormone released during exercise. These not only help reduce pain now, but can continue having an effect for up to 48 hours. 
In addition to dopamine, our levels of serotonin are increased with massage, affecting our overall mood. With serotonin also known as “the live drug”, creating a scenario where we are relaxing and  feeling less pain will automatically predispose us to sexy time.

So there. Lessons learned for #TLDR
– only do stuff you want to do
– masturbate more
– use pillows
– massage more  in non-naughty areas
– oh, and make your bedroom a nice place to be

We bought the prettiest duvet set with butterflies on them! This is utterly unlike Mr Geek, but we (I) spend so much time in bed these days that we’re trying to make it as welcoming as possible. We both like purple,  so have gone for a white and purple theme for the room.

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Stock image of our bed set - I'll upload the real thing soon!

To finish this all off, I ordered a white butterfly lampshade and 3d stick on wall butterflies to go over the corner wall.

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I’ve never wanted a girly bedroom before, but we threw each other a curveball on this one. We’ve gone from a Marvel Hero duvet set to 3d butterflies. Maybe we’re finally growing up…

Sources : http://www.pacificcollege.edu/news/blog/2014/11/08/neurohormonal-effects-massage-therapy

It’s Going To Be Thunderous!

… or at least I hope it will.

Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter.

Today, continues in this over-excited vein with our Thunderclap Campaign nearing it’s end (3rd April) with a current 88% support rate and 4 days left to run. That’s 12 people I need to convince to pledge a (free!) support message via Twitter, Facebook, or Tumblr. This is technically easier said than done.

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The first day was very exciting with over 25% support, this went up for over 40% by day 3. But then it slowed. We’d run out of people to reach via our own social channels and had to let the campaign simmer over the next 2 weeks (you have 14 days to collect 100+ supporters). Things picked up again, the past few days, immensely so after a bulk email of our first ever newsletter for Expect Zebras. But I’m twitchy again. That feeling you get at the end of an Ebay bidding war where there’s just seconds left and you could lose that prized item if you don’t watch it like a hawk is there (can you just imagine what this is doing to my POTS?!).

So there we are. Whilst Mr Geek continues to talk the app into playing nicely with our database where I have been furiously adding chronic illnesses, their awareness colours, and lists of potential medications that people want to record, I am set the challenge for the day to get our Thunderclap 100% supported.

Would you help? Please??!

 

Pain? You’re Fired!

I have my first appointment with the Pain Management Team on Monday and I’ll be honest with you, I’m dubious.

I get this feeling that pain is something to be dealt with in a matronly fashion with all this fuss and nonsense put away just so. We’re going to manage this pain out of a job. Actually I quite like the idea of firing my pain….

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There are lots of people who post happy positive posters about not being their diagnosis and being pain / EDS / CRPS warriors. They appear to be using all of their energy convincing the world that inside them is a healthy person trying to get out. I’m sticking with my stoic approach. It’s worked for me for a long time. Let’s look at the objective facts:

– I’ve been in some form of pain for as long as I can remember
– I’ve been seeking help for specific joint pain since 2004
– I have a lifetime diagnosis of Ehlers Danlos
– POTS & CRPS are not permanent diagnoses
– I have 3 degenerated discs in my lower back, my neck hasn’t been MRId but the headaches and arm pain suggest similar.
– I’ve not had an upright MRI to show how my body responds to gravity. That’s expensive.
– At this moment, my mobility is bad. Powerchair bad.

What’s the absolute worst that could happen?
I get worse, or can’t tolerate the pain levels and have to stop teaching completely, rather than my current lame attempt at being a real person and teaching from my wheelchair which has varying degrees of success.

Is that the absolute worst? Seriously?
No, it’s relative to current situation, but I refuse to entertain any darker thoughts about remaining in this much pain. There are much darker thoughts. They pop up more than I care to admit.

When I look at those people who are ‘pain Warriors’, I know that’s not for me because for me, there’s no point wasting energy I don’t have pretending not to be in this situation.  It sucks yes, but this is my reality. Denying that pain, or joint dislocations exist is the kind of stupid “I’m fine!” attitude that landed me in a chair. That and shitty genetics.

So, apparently we will “manage” the pain better and hey presto, angry cornered animal returns to serene Swan. Pain management seems the way forward. Or at least it’s the thing that all the specialists have said after they shrug and tell me that they’re not that well versed in EDS, or POTS, or CRPS, or any other medical acronym that has stuck itself to me like an irritating bur over the past few years… Months ago I was sent a pile of questionnaires to complete about my pain. A whole host of the questions in these were vague and repetitive. For a (computer) scientist who finds holding a pen painful, I want a to the point assessment with minimal writing – online if possible. I don’t want to fill in three million on a scale of 1-10s about how much I can still do “things”… what things? I still enjoy eating cake. I’m not such a fan of rock climbing these days.

They even included this one. Twice. The pain is zen. I am the pain. The pain is everything and everywhere. It hurts…. HERE. As in, in this room.

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It put me on the defensive because the data analyst in me extrapolated 3 questions from all of these questions:
1. Are you faking it?
2. Are you a hypochondriac?
3. Are you mentally ill?

No, No, and no but I’m starting to wonder. I’m in chronic pain & like Obi Wan Kenobi, you’re my last hope.

Anyway, my appointment came through telling me that I would be seen alone and then they would decide if my companion could join us. Err, no. He’ll be coming in thank you. Do I sound a bit defensive? I guess I am. This is now my bog standard reaction to medical professionals that scare me. And anyone who may want to physically examine me, stands a very real chance of holding a disembodied limb by accident. This was the case with the Rheumatologist who just put that shoulder back where he found it and hoped no one noticed. I did notice. It hurt.

When I was pregnant I growled an obstetrics consultant out of a room backwards when he suggested I wasn’t helping my blood pressure by getting angry at him & that high BP makes women “a bit crazy”. Again, in seething agony from what was diagnosed then as SPD and spontaneous labour, I wanted to be listened to and given answers. Not patronised.

Exhibit B: every nurse / anaesthetist who scoffed at my suggestion that I’m hard to get blood from. I tried donating, the British Heart Foundation lovely lovely nurses declared that I bleed less than a well done steak. The 15 minutes, 2 nurses, & 3 pediatric needles required to do my blood test last week ought to be proof. The cumulative result of people not listening to my knowledge of my body was an anaesthetist running around my head shouting “Shit! Shit! SHIT!” After yet another canular collapses and my BP plummets mid c-section.  Everything goes white…. the pearly gates rang out the expletives of a tubby man in scrubs who knew better.

Exhibit C: The NHS Rheumatologist who I pinned all my hopes on (because whilst the Hypermobility Clinic is amazing, it’s also expensive) then pulled out my shoulder & caused me to pass out during the physical after sending my HR through the roof. After all this, he tells me that Rheumatologist don’t deal with EDS, that my pain is caused by lack of sleep, POTS is just deconditioning,  thank you and goodnight. No interest in helping to check the other symptoms  (difficulty swallowing,  brainfog, gastric issues, weird bladder, steaming headaches). Since then, GP has referred me back to London & a cardiologist. Still stuck on the GI front until I can’t eat solid food at all. Nice.

Exhibit D: Physiotherapists. Who, to give them credit probably know far more about the body as a whole than orthopaedic consultants. But traction is not the answer for everything – actually, the answer to traction was permanent nerve damage. Pain when you have unstable joints is not gain, it’s pain. I’m not sold on infrared… waving a light over a slipped disc (or 3) then charging me £60 doesn’t seem all that worthwhile. And the NHS ones recently refused to see me after a telephone consultation because they only do one body part at a time and I’m just to darn complex. A&E keep referring me back to physio after each major dislocation, but they’re not keen.

So here I am staring at Pain Management. I’m on day 5 of a CRPS flare that makes me want to hurt people as throwing my whole basket of drugs at it, just about keeps me at a point where I’m coherent. But not sleeping. They’re going to want me to put into words what it feels like, I can describe EDS pain, but CRPS is different and less obvious externally. So I’m going to take this post with me so I don’t forget (or if this continues, in leiu of speaking).

What does my CRPS feel like?

It’s based around my pelvis. I visualise it as a the facehugger from Alien that is more of a arse man. It’s attached itself to my SI and sunk it’s teeth in. On a good day, it’s teeth are made of glass and it chomps down if I stand, or sit, or don’t shift about enough. The glass grinds in my hips. Stretching helps release its jaws, but it’s temporary, so I keep it sedated with Gabapentin.

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On a bad day when it flares, the facehugger is grinding it’s glass teeth together and I can feel my SI move  (I know it’s not meant to move, but I, and everyone around me can hear the audible hollow clunk of it slotting back into place. Sometimes I can do this just by clenching my buttocks). On a bad day, it has tentacles that weave their way into my hips and legs making them twitch and shake and pulsate with waves of lightening pain. It leaves my feet feeling like they’ve been painted with acid and they burn. On a bad day, the face hugger’s arms extend up my back and poke around with the trigger points in my shoulders. Instead of having standard sore & knotted shoulders,  they are white pain that screams. On these days I cover the facehugger with heatpads and hot water bottles, I use the metal in my wrist splints to rub the aching from my thighs and knees until it’s just the fizzing electric pain left, I keep taking the gabapentin and add oramorph which does little for the CRPS, but reduces the acute pain from today’s subluxations which doesn’t take the level of pain down,  but turns the volume down enough to focus the heat and TENS on just one place. TENS helps. It messes with my brain and fools it into listening to the prickly pain of the machine up at full volume. It’s like drowning out the screams of Dante’s 7th circle of hell with death metal music. Neither are particularly soothing, but the latter is more tuneful.

I’d rather dislocate daily than have regular CRPS flares. A dislocation is a deep purple pain that makes you feel sick. You can RICE a joint and you know what the worst is – a bit like childbirth. We’ve done this before, go through the drill and at the end register another shiny new bruise that won’t let you sleep. The CRPS facehugger isn’t like that. It dozes off, then wakes up with a start and clamps down in different places and with different types of pain.

This week we added a great big swollen red foot to the fun and games. By the time I took the photo, my toes barely moved from being so puffy and my ankles had all but gone. Did they hurt? Yes! But we replaced the chemical burns with the feeling of having water balloons for feet. They felt like they might burst with any pressure. Yum!

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This seemed like a really negative post, but actually by using personification for my CRPS, I’m able to relax through the worst of it. By making it into the “ButtHugger” I can explain it to the kids who see me wince and yelp in pain.

If it’s a “thing”, then I can tell it off and to sling it’s hook.

I’m not holding onto my diagnoses. Im pragmatic. I’ve worked out ways to continue with life. There are therapies like hydro & massage that I’d love to do regularly but don’t have the resources (or can’t find a pool with a hoist that isn’t for horses in the whole county!) . There must be exercises I can do without dislocating, and I will find them.

This isn’t the end Butt Hugger.

 

Edit: post appointment – actually, despite my reservations, the pain management appointment went incredibly well. They were very supportive and entirely understood my concerns about dignity, mobility, and EDS. They were less aware of CROS, but were willing to learn. These ladies are keepers.

 

Thank you to Burning Nights for featuring this blog post on their website. Please follow them on Twitter at @BNightsCRPS ( and me on @ExpectZebras )

A little project

https://weareaccessible.wordpress.com/2016/01/19/dunstan-hall-norwich/

So, I started a more official blog with some others. If you’d like to write, give me a shout 🙂

Hopefully my next review will be much more positive  (actually, it will. I’m writing about some awesome gadets)

Yay for being productive! Can I sleep now?

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?