Live to work, or…

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

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

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

image

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

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

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

image

It's not a terrible view on my commute

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

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

image

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

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

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

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

image

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.

image

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.

image

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.

thunderclap_support

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….

image

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.

image

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.

image

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!

image

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.

image

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)

image

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).

image

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).

image

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.

image

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…

image

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

2015 Roundup

I don’t go in for end of the year musings, but this year has been a bit of a bitch so I’m going to allow myself this one.

January started as usual with my birthday. I’d been after a ukulele for months and my lovely uke arrived new years eve. Part of my hankering for a smaller string instrument was that my hands were getting sore playing my guitar which meant that I picked it up less and less. No one really knew why my hands were sore, but the GP had identified osteoarthritis and prescribed hand supports.

* video link *

My back & SI had been playing up yet again since November and after more unfruitful visits to my GP who told me that my hips & hands couldn’t possibly hurt that much and that chest pain wasn’t a problem, I threw the private medical insurance card at them. Within a week, the referral was done.

I had yet another MRI that showed very little aside from further degeneration of my lumbar discs (L4 & 5 are now entirely black) and some curving. The consultant checked what my insurance covered and suggested facet joint injections & simular in my pelvis. We discussed the other pains and weird symptoms,  but he was convinced that it was just early onset disc degeneration. At least he wasn’t calling me a drug seeker…

Knowing that I’d be out for a few days, we set up the bedroom with wide-screen World of Warcraft (and Google Classroom ).

image

February meant that the operation came and went and 2-3 days of taking it easy became 2 -3 weeks of excruciating pain & swelling from a reaction to hydrocortisone and a lack of healing from the injection sites. I got irritable online and a friend suggested that all this pain and injury might be EDS. I laughed it off as I wasn’t in that much pain (aside from daily opiates and walking with crutches at least once a month and a stick moreso… but it’s easy to underplay what became normal after dislocating my pelvis in 2012).

Physio after the treatment was short & sweet and suggestions were made about more injections (nope) or fusing the vertebrae. I wasn’t keen on the grounds that no one wanted to listen about the other pain as it wasn’t covered by the insurance & I didn’t want to be operated on by people purely motivated by money.
1 simple canular = a whole hand of bruise!

image

February was also Valentines Day and I topped our nerdy gifts this year with a tshirt sporting both of our WoW characters. Funnily enough, that tshirt has been missing ever since this photo… as has that terrifying beast on Mr Geek’s face.

image

March saw a birthday for TinyPants celebrated in style with the Gypsytree family. There was a fair certainty that this would be the last one as D had moved across the water a few weeks before.

image

March also contained a trip to London to the Rezzed games convention where I walked stick free but not so much pain free. A fair portion of the day was spent identifying games playable on seats, subconciously conserving spoons. I did however, get to meet the guys from Introversion again and play the nearly out of Beta version of Prison Architect which we’d bought into in the super early alpha stages. It’s now out and was so utterly worth the wait!

This man here is my indie gaming hero.

image

April was the first time this year that I conceded the use of a wheelchair. We’d driven to Holland to visit family and I was using crutches to hobble about as my pelvis was wonky & my back hurt. By that point, the strange neck to eye headaches had started in force rather than just once a month or so.
We visited Efteling and Apenheul which even 8 months later, the girls still rave about. It has to be said the parental alarm system of seeing a monkey jump onto your daughter is truly messed up after visiting Apenheul as they run free with no cages, or barriers other than liking the idea of regular feeding.

image

I also continued my ukulele adventures whilst being “helped” by TinyPants. What I didn’t notice was that I was spending more and more time “on bed”. We’d go upstairs as it was more comfortable for me, or I was tired and wanted to rest shortly after the girls went to bed. My time on WoW was also declining as holding the mouse was starting to hurt my hand more than I cared to admit.

image

*Video link here *

May brought us some surprise visitors that made everyone’s heart melt. A vixen had tunnelled her way under the shed and out came 8 tiny fox cubs! Hours and hours were spent watching them play and grow and tear up the garden. I’m not ashamed to say that we went out & bought them puppy food and dog toys. They were the best kept fox babies in the land and eventually they each went off on their merry way, aside from the smallest who despite the best start in life didn’t make it once mum had moved on. There’s something quite special about sharing your home with wildlife.

image

*video link here*

Mr Geek took all this being at one with nature a tad too far and fell foul of kissing a tree whilst out mountain biking. This little escapade earned him a trip to A&E, 4 stitches and a very sore face!

image

Our annual beach bbqs were taking on true British form where our gatherings with friends and their ever expanding broods were chilly and ended abruptly by torrential rain! Much of this particular one was sat on a blanket being in charge of tea as walking about was becoming painful without adequate drugs. Despite this, I did get a cuddle with the gorgeous twins and equally gorgeous E. There’s something maternal that never quite goes…

image

June clearly didn’t start off well…

image

Actually, it didn’t. That had been the day of the A Level exam with cock up after almighty bloody cock up. I was starting to desk jockey a fair bit by then and having seen my beloved student get so stressed all I could do was hold it together, come home & get ratarsed.
I’d rather have a day of mega EDS flares than watch my kids look that scared again.

Still going with my ukulele, although it was starting to pull on my fingers, I was determined to keep my hands going. I’d noticed over this term that I was losing my voice more regularly than before. Usually, the first 2 weeks of each term were a struggle,  but now after any particularly loud lesson I’d be crackly. I put it down to the insane heat in my classroom which seemed to be getting to me more this year. I’d get woozy and assumed that my blood sugar was low.

*video link here *

June certainly wasn’t all bad though! I spent quite a large proportion of it creating facepainting designs for the summer fair at the girls’ school. Whilst pens were causing me grief, the lighter touch of sponges and brushes remained ok and we had tonnes of fun with these.

image

I also got to attend my first school prom at age 35. Ok, it was as a teacher and as such a chaperone, but I got to wear a proper evening dress and it was the last time that I danced this year. (Just look at the classy teacher getting ready in the staff toilets!)

image

July signalled the end of the school year (ok, the end of July did, but meh details) and as it turns out, undiagnosed teachers don’t feel well during a heatwave. The best remedy for feeling weird and hot & bothered is to sit in the kids’ paddling pool complete with work clothes and lay there until you feel human again (about 30 minutes).

image

Other things that don’t make you feel wonderful are being under hot stage lights or getting nervous. Asking for a chair on stage was a smooth move when I somehow got myself invited up to take part in the whole Knightmare Live show (for future reference, don’t clap excitedly when you see Treguard walk through the bar, and admit to being a Lord Fearleader unless you want to talk yourself into being in the show ).

image

For reference, I’m looking extastic & Treguard is looking hot & sweaty and a bit frightened.

image

In a totally unrelated matter, July was also the first time I properly noticed my skin tearing from anything other than stitches or tight knickers (it’s like chaffing but worse). This time,  I’d worn a strapless bra which had rubber in it that had not just rubbed a mark or chuffed, but actually torn my skin leaving blood stains on my lovely white shirt. This photo was 2 weeks on (because some idiot didn’t think to take a photo at the time!). It was at this time EDS was shouted at me again as something to take to my GP.

image

I had other stuff going on though, as we had a holiday to Malta! Cue the family who are unable to just take a nice photo of themselves. Oooooh no – we have to pull funny faces.

image

I never understood after I got ill why the intense heat didn’t get to me out there, except it did, I just didn’t notice as we created a routine around it. Our room was air conditioned to within an inch of its life and we spent late afternoon & early evening “resting” in our room. (That’s code name for… laying on the bed and reading),  and during the day we were either in a pool or the sea. When we were in the actual heat, we all suffered and sat down lots.

The photos we took hide the mobility well. I love this photo (and desperately want to go back to Medina), but what you don’t get to see here is the stick I used to walk around and the sitting down every 15 minutes and daily massages needed to keep my back and knees from ceasing. What I want to remember is that beautiful seat and the smell of the flowers.

image

August appeared whilst we swam in the Maltese sea and passed us by. But when we got back, I got ill. Bronchitis hit me between the eyes and knocked my immune system for six. Through coughing, my ribs moved out of place & my pelvis shifted. It was the summer holidays, so stick in hand, we carried on. On a walk up to the top of my favourite hill with the kids, D who was back on leave joked that they were the ones struggling whilst me with the arthritis was taking it in my stride. This clearly means that I can completely hand him responsibility for the shit hitting the fan as he jinxed me 😉 . I will make it my mission this year to get back up to the top of that hill, even if I have to find an off road chair. That is our hill. We grew our children on it.

image

By mid August, I knew something was going badly wrong having not only got into the habit of yanking my SI joint back into place each evening, but watched my knee pop out and back in again and watch my previously wobbly fingers begin to pull out of their sockets like Bic biro lids. I took a set of photos of the Beighton scale that my friend had pointed me to and took them to my GP asking her to assess me using the Brighton Assessment criteria for EDS.

image

My GP instantly recognised the signs of EDS as a friend of hers had similar symptoms, including many I hadn’t considered to be linked all the way back to complaining of clicky knees aged 9. She referred me to both an NHS consultant and privately to the London Hypermobility Unit as she was concerned about my unusual weight loss that appeared to be down to me feeling sick after eating small amounts, or food getting stuck before it hit my stomach. At this point, the word dysautonomia wasn’t in my vocabulary.
She told me to research as much as possible as EDS is rare and the more of an expert I was, the better my chances of treatment were.
Later on when I changed surgeries, I thanked her for this advice as neither of us knew how much I was going to need to advocate in such a short space of tim

image

e.

September was a start back to work on crutches with a determination not to let this beat me. Day one after 2 lessons I was on the floor in floods of tears with my back out and my hip & knee screaming. I had to accept some help. Cue Roboleg! Here to stop my knee collapsing and consequently hip twisting. It was heavy and bruised the crap out out of my other leg, but really worked!

It was also the month when my first wheelchair arrived… and was put into the car and ignored. Little by little I accepted that the chair was helping reduce the daily pain and broached the subject at work. The first public outing of seeing people with me actually using the chair was meeting up with The Fighting Mongooses at EGX in Birmin

image

gham.

Maybe it was the cosplay. Maybe it was the brilliant people, but this weekend was the first time that I felt ok both being in a chair and ok letting people help me.
I made some exceptional friends that weekend and am not ashamed that I had a little cry when we had to say goodbye.
h

image

September was also a period of travelling rapidly downhill in terms of symptoms and pain. The more I returned to the GPs with pain I couldn’t tolerate, the more they sent me away telling me to wait for a specialist.
Making it through a day at work required going to bed by 7.30pm and I’d return each evening in so much pain I could barely speak. I don’t remember a great deal about it, aside from being very scared that I was no longer functioning.

I began to read about this diagnosis I’d been handed and looked for ways in which I could “push through” the pain. Instead, I found a whole host of other things that my body can do that technically it’s not supposed to.

image

By October, my major torso joints were so floppy, I was using the chair daily including at work and still pretending that everything could be fixed with a positive thoughts and growth mindset. (Someone slap me). However, this lady had the balls to put me straight and tell me that it was ok to be pissed off that this was happening and shared her own battle scars with being landed with a disability. I teach her how to duck face & in return she forces me to stop being emotionally crippled. It’s a totally fair swap.

image

I ended October in more pain than I started by daring to use crutches in the house, turning on my heel and fully dislocating my patella. Whilst usually that would mean snapping it back on, this time I couldn’t line the kneecap up properly. Arse. And so to A& E we went and a fortnight of cricket bracing later, my knee was less bruised but just as wobbly as before!

image

October was also the month that I got my official on paper EDS 3 diagnosis from a Specialist at the London Hypermobility Unit and referrals for the various autonomic issues which were getting steadily worse. The question how much weight have you lost started to prompt raised eyebrows.
Our hospital trip was made lighter by taking the girls to the Natural History Museum for Beanpole’s birthday.  The kids thought it would be funny to show me what a skeleton ought to look like.

image

Half term was spent in Northern Ireland with the GypsyTrees who had now moved over there and were well and truly settled. It’s hard to explain the feeling of being happy that they’ve finally connected with a place that feels like home, and yet feeling like I’m missing a limb. The physical journey there was hard and I used all my spoons and other cutlery, but it was so worth it for those familiar voices, sights and smells. I’m pretty sure my friendship with Mrs Gypsytree will always be that if 2 six year old girls who secretly wish they were sisters.

image

November saw some big changes at work as assessments started to happen and I began to use the chair not only daily, but stopped driving due to a combination of being on a higher level of opiate painkiller with oramorph on top, and with joints popping out the ability to emergency break (or in fact steer) was pretty much gone. Cue Mr Geek becoming my chauffeur whilst we applied for transport help to keep working.

image

A huge bonus this month was my robochair arriving and also finding an inflatable bath chair on eBay. They’re like hens teeth and once I got over the idea that someone else’s naked bottom had been on the chair, I rejoiced I’m the idea of no more being painfully lifted in and out. Just a button press and I was gently lowered into my lovely bubbles.

image

December saw the slowest (and possibly most expensive) roller coaster in the world arrive. This literally gave me back normality around the house as I could use my wheelchair to potter about and then go up and down the stairs as I liked. It was also a turning point for my parents who saw that I wasn’t going to go into hospital and “get fixed”, but was going to fight tooth and nail to remain productive. In their own ways they’ve tried to show that they get it now. I’m really very thankful that they’re trying so hard.

Yet another trip to London for autonomic testing introduced me to the Nutty Professor who gained my absolute trust in under 5 minutes. He was calm and funny despite me doing an excellent example of collapsing when he asked me to do simple things!

Silver lining here is he’s made an unconfirmed diagnosis of POTS with a request to our insurance for me to be admitted for a couple of days for more Spanish Inquisition tests. However, he was confident that he can treat the majority of the head wobbles.

image

The main event was kept as normal as possible for the short people despite their insistence on having a Darth Vader Christmas tree. Family and friends were in abundance and Mr Geek was off with us for a whole week of festivities (and the kids being glued to the Xbox in almost Matrix style ).

image

My spoons were being used up by simple trips out in the car / chair to the supermarket, and so Beanpole has set up a secret code for when I’m too tired or when she’s too overwhelmed and we just need to switch off.

image

The year was ended as it began, with card games and silly onsies and wonderful friends with our ever expanding collective broods being their wonderful little selves.

image

image

I could say that 2015 kicked my arse, and it certainly attempted to. I can’t say that it’s been easy & 2016 has certainly started with me laying in bed trying not to breath too much to keep my rib still BUT…
I have the most incredible supportive husband who physically gets me up and dressed each day.
I have two mature and caring daughters who have taken this in their stride.
I have friends who aren’t just there for the fun times, but drop everything to show me that they care.
I have a zebra onsie.
I have a plan for 2016.

Watch this space, because I’m not done just yet.

Happy 2016 everyone 🙂

image

I Like Cereal – I sound like rice crispies

I saw the NHS Rheumatologist today, you know just for funsies. This was the appointment I’d been referred for by my GP in August. Now before anyone from the US jumps in with “ahhh loook, your health care sucks”, I’ve also used my husband’s additional insurance to see three specialists since then, get a diagnosis and start other investigations. But the insurance doesn’t cover long term care.

Our state system however, doesn’t run out. It will care for me whatever goes wrong using the resources that it has in the best possible way to ensure it will help others too. Part of that is today’s consultant giving his opinion to the Pain Management Team who will take me from here to wherever we end up. I’m not charged at the end for any of this. There is no bill landing on my doorstep, I do not need to be afraid of the cost of the medications prescribed. I’m just that little more protective of our state health care seeing people use it as a stick to bash Obama’s dream of free health care for all. I don’t understand people who don’t think it’s a good idea!

I saw one of the 4 specialists for our county today who despite having a queue, took his time to explain his thoughts to me, and throw out the piece of paper that gave me a diagnosis and examine me himself, and in more detail than the private assessment. I asked if it was ok to take audio notes as my brain fog is at warp speed and whilst I may smile and nod, my brain isn’t retaining much. He agreed with no issues and so my phone has become an extension of my brain once more!

image

He looked for signs of arthritis  (none – win!) and poked at weirdly painful sites just outside each joint. These are trigger points where nerve endings are bundled and are indicative of chronic pain response, where the body is so used to pain it goes over the top with pain signals. He also successfully told me without asking which joints hurt the most and which sublax most often. His earlier comments about disregarding dysautonomia were sort of puts aside as where joints were concerned, this guy had magic hands. He also did something far more important – he spoke to me, but explained what he was doing to Mr Geek & asked how he was coping. Mr Geek walked away from that appointment informed, relieved, and empowered. I can’t thank the doctor enough for doing that.

Despite being freezing cold, in my underwear, with a strange man causing extra pain to my joints, I liked him.

image

He asked me to stand up, which I did with the help of Mr Geek. Then bend forward. Cue second round of tunnel vision & this time full on collapsing on Mr Geek in front of a doctor in a week. A new record! But despite feeling my vision go black, I knew it was Mr Geek who put me back on the table, but there was an extra hand on my shoulder that I was really aware of & he kept it there until I was fully conscious and stopped the examination right there & then. A simple piece of physical contact gave me a focus point to go from fainting, back to focused and calm – clever man.

He had a more positive outlook on my EDS and autonomic issues than any doctor I’ve seen so far. I might even use the phrase of the moment at school – get had a growth mindset. In essence, he said that if we look at this holistically, using pain relief from medication, mobility aids to keep functioning, physio to maintain or even build muscle tone & assistance from the autonomic team for gastric & pots, then there’s no reason why we can’t slow the decline if not even reverse it a bit. Reverse it.. as it make it better! Ok, make it a bit better. I’ll take that.

Part of dealing with the heart rate, and also the slow transit is drinking more liquid than I thought possible.

image

I appear to be taking the small child approach to water in that I’m only thirsty when I’m meant to be going to sleep, or instead of eating dinner, or when we need to leave the house. Aside from that, I’m getting constant prompting from Mr Geek or my mum. Whilst I feel like a 35 year old child being nagged, it’s probably for the best as the IBS is reigning supreme this week and dehydration is nigh. Whilst we wait for the insurance to confirm if they will pay for the autonomic testing with the Nutty professor, it’s home treatment with water & salt. Fingers crossed it comes through.

image

I started writing this post at 12.30am as Mr Geek has just helped me stick the TENS patches over the back of my shoulder. One of the things I took away from the appointment was the effect that my crappy sleep pattern has on my pain levels – yes, I have pain from subluxing left right and centre, but I also have secondary pain from pulled muscles, trigger points (knots… really painful muscle knots ), and CRPS. His suggestion was that lack of sleep triggers pain, and pain triggers lack of sleep, so I hit a viscous circle. Sadly, tonight Consultant causes shoulder to sublux which for the love of God won’t go back in, causing pain (and some interesting numbness in my hand and forearm), causing sleeplessness. I’ve medicated to the eyeballs, but nope.

image

So instead of jumping on Mr Geek’s last nerve (because frankly, oramorph just makes me giggly instead of sleepy), I’m trying the tens setting that just thumps against the muscles making them twitch a bit. It does actually tone down the pain a bit, certainly enough to think straight.

Finishing this post at 2am probably isn’t doing the sleep patterns much good, but it has allowed the TENS unit to get deep into the muscles and do its thing. Tomorrow is Christmas Eve which means final wrapping, excited kids, and the traditional supper with Mr Geek’s family. I’m not at my best in the evenings now, but I wouldn’t miss it for the world. We will spend the evening tracking Santa on Norad and watching various grandparents preserve themselves in alcohol. They take me just as I come, and in return, I’ll do my best to play along with being a human…

image

Note: for those of you confused about the cartoon guy – it’s Cheese from Fosters Home for Imaginary Friends. With the combination of brain fog and side effects from pain or painkillers, I pretty much relate to him right now.

I Have Faith, It’s just Not Your Faith

It’s Christmas and there’s lots of people celebrating in their own way, and whilst out shopping for my beautiful girls’ gifts I was approached by an utter stranger with the words “he will heal you when you let him into your heart”. Unlike last time, (and because it Wasn’t a child) I responded with my actual thought of “Don’t be ridiculous”. Also stop touching me. Personal space please.

I fully expected to laugh about it on the way home, but instead I packaged it away in my head. And waited until now in my safe blog space to explore it. So welcome to my 1am painsomnia party. Anyone in the house who can’t sleep despite both diazepam and oramorph shout “heughhhhhh!”…..  oh. Ok. Just me then.

I know a lot of people who have enormous faith, some Christian, some Muslim, others Buddhist. They are kind, wonderful people that I am richer for having in my life. I was raised Christian,  but given the freedom to make my own choices (with a healthy dollop of Catholic guilt should I choose to leave the church). But whilst the amount of water remains the same, my glass got bigger.*

My first bug bear was the idea that I got ill because of something I did. Sin makes you sick… or I did something to deserve this stupid genetic condition that wreaks havoc with my internal organs and encourages my skeleton to separate at every possible occasion. I deserve this pain because I sinned. How very Catholic. If this is the case, had I known, I would’ve enjoyed that sin a lot more.

image

The other suggestion I’ve had from people of faith is that God has a plan and this happened for a reason. So, this all loving father tried to kill my daughters (which were saved by science) and has had a fair few pops at me and because I’m the weeble that won’t fall down, we’re just throwing pain in my direction because there’s a reason I feel like death on a daily basis, it’s just on a need to know basis. Bollocks.

image

EDS has been slowly stretching me like chewing gum for a decade (and much longer when you consider childhood injuries), although this year the stretching went nuclear, but to add to that CRPS developed in my pelvis. I will not be stronger because of this, what I will be is physically addicted to opiod medication because this is levels of pain that no amount of praying is going to touch. In those wee small hours in the early days when my bones felt like they were running with acid, I prayed,  I begged, I would make bargains. In the end, the being that made it stop, or at least tolerable, was a GP with a recognition that I needed something to work on my neuropathic system. If you are reading this and still think you should post a passage from a 2000 year old book to tell me why I feel pain, please study the chart below. Now live that pain daily until science rescues you.

image

The side effects of Neurotonin which was prescribed alongside a whole host of painkillers for the non-neuropathic pain, are similar to those following a mild stroke. The drug prevents synapses from being formed and as suc, words are temporarily lost from my vocabulary and my short term memory worsens. I quite literally did give CRPS a piece of my mind.

My faith is placed with my doctors who have dedicated their lives to solving the mystery of dysautonomia and eds. They do not declare themselves infallible or omnipotent, but so far they have been brutally honest about a lack of a cure, whilst helping to reduce pain and set me on a path where I’m strong enough to help myself plateaux rather than slide down further. I do not worship them, rather respect them and trust them quite literally with my life.

I will finish the same as I started. If you have faith, that is a wonderful thing. I commend you for holding onto that light in a world that’s pretty hideous right now. But, please don’t try to convert me. I am a humanist – I deeply believe that we should attempt to treat each other how we wish to be treated and take care of the things around us. When I die, I believe that it is the end – my body will go back to being part of the earth and I will live on genetically in my children. What matters is the here & now rather than any afterlife.

Christmas to me is a Pagan festival which celebrates the winter solstice and the idea that hard times are over half way through. Spring will soon be here and with it the warmth that will sooth my bones and food that will support my slowly failing body. Despite this, it’s also a holiday adopted by other religions to promote a sense of community, and anything that makes us look at someone and ask them if they need a hand (or leg, or shoulder) can’t be bad.

So to you, whoever you are. I hope this week brings you a small piece of love or joy in the form that you hope for. And if you possibly can, this week pay it forward – ask at a coffee shop if you can pay for the next person’s coffee, go sit with the little old lady sipping tea on her own and listen to her, see that lady in a hijab looking uncomfortable on the bus? Go sit with her and smile if she looks at you, listen to the carol singers at your door and thank them for bringing you music, however bloody awful and put of tune it was, ask the lady in the wheelchair if she needs a hand. Be nice. Human nature is not to be cruel.

*kudos to you if you got the reference