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??!

 

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Why I’m A Z List X-men Character

Like all X-men, I have a back story. I have genetic mutations that make me special and ‘other’. I can’t freeze things, I’m not part-wolf, I don’t have lazer sight, and I can’t fly. I use a wheelchair,  but unlike Prof. X it’s controlled by a joystick and not my mind, although recently I’m starting to resemble him in the hair department.

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I spent my formative years chasing letters after my name. In fact I’d just started looking at the final frontier of a PhD when a whole new set of genetic mutation induced acronyms arrived in my life. My medical diagnoses are a series of strange acronyms that most people have never come across:

EDS – Ehlers Danlos Syndrome. A genetic mutation of collagen that makes me the Z list of X-men where my connective tissues such as ligaments, tendons, muscles & internal organs stretch further than they should and forget to stretch back causing daily joint dislocations or subluxations (partial dislocations), and slowing of gastric transit as stretchy insides means… yeah. Ew. Imagine Plastic Man’s ability to stretch, just without his ability to stretch back. Every dislocation makes that joint a little more loose and more liable to pop out again. An Adult has 206 bones; give or take adult bone fusions, that gives me 250 – 300 joints to play with daily.

My skin likes to get in on this action being velvety soft, but ultimately tearing or bruising at the slightest thing. There are times and places where this is not welcome! It’s like being the anti-Deadpool : beautiful skin & zero ability to heal.

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POTS – Postural Orthostatic Tachycardia Syndrome. A form of dysautonomia which is a neurological condition where your autonomic system (which controls things like heart rate, digestion, body temperature etc) goes haywire; POTS means my heart rate rises 30 beats or more from laying down to standing, or sometimes even just sitting. The result of this is a lack of oxygen to the brain and ultimately fainting. This isn’t fun when you’re the teacher and you wake up to a class of kids terrified that they’ve actually killed you. This happened twice this term. My teaching days are numbered.

POTS also comes with heat, exercise, and often food intolerance. Any of these can make symptoms of palpitations, dizziness & nausea worse. This means my arch nemisis is a hot bath or shower.

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CRPS – Let’s save the best til last.
There’s a pain scale that suggests that unplanned childbirth hurts a little more than amputation of a finger without anaesthesia. Apparently a CRPS flare rates higher than this.
The daily subluxations of my Sacroiliac (SI) joints

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(which is the bit of the pelvis that isn’t meant to move!) triggered a neural pain response that hurts worse than any dislocation I’ve had.

My CRPS flares are focused around my pelvis and at their worst feel like those laser eyes I don’t have are inside me and burning my bones. White hot lightening goes down my legs and I flip from begging my husband to massage them to not being able to bear him breathing on my skin. I can throw all manner of drugs at this, including the anti-epilepsy drugs that destroy your synapses (you’ll willingly give up a lot for this to go away), but the only thing that gets through a real flare is my TENS machine on a permanent low buzz.

So as mutants go, I’m a reasonably sucky superhero. But, despite, or perhaps because of all this chronic pain, I’m much tougher than I look. Alongside my husband, who’s also my carer, I’m carving out a new life for myself by developing an app for people with similar chronic conditions called Expect Zebras. I have the temper of Wolverine, the mental health of Harley Quinn, and apparently the pain tolerance of Deadpool.

A friend of mine describes me as Oracle. Who, with a former life as bat girl, doesn’t let her disability impact upon her being a top programmer / hacker & part of the suicide squad. If anything, she uses being pissed at having her independence snatched away as rocket fuel.

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I like her style. She looks like a woman with a tens machine & a lot of focused frustration.

I’m not bat girl anymore.

Holly is a mum to 2 mighty girls, a computer science teacher, programmer, and co-owner of Expect Zebras – The Chronic Condition App & Wristband. She’s learning to live with disability through EDS, POTS & CRPS. Some days more gracefully than others.

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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 )

[Insert Witty Title Here]

It’s been a funny old day facilitated by a lot of painkillers. It’s been a bloody long one too. A total of 13 hours from leaving for work to returning home. That might not be much to some, but 13 solid hours in the wheelchair with no chance to transfer, or stretch out, or in fact have a nap after a tosh nights sleep was all a bit much.

I was greeted by a colleague today who goes out of his way to help me navigate the doors at work each morning. Not out of pity, but because he gets that it’s just hard opening doors and he misses the sense of community from his home country that is lacking in the UK. I enjoy our morning chats and I find his very honest love for people infectious. I’m a grumpy arsehole in the morning,  but he brightens my day by leaping out of his classroom to hold open a few doors just for me.

This morning he asked me how I stay so cheerful and positive. He really meant it. I did a presentation at the start of the year to the whole school faculty and apparently I was genuinely passionate. I do smile. I do ask how people are. I do laugh off the crappy days. It worried me that I seem so genuinely positive. Have I really got that good at faking it?

Of course I’m not going to tell you I’m in agony and my pelvis is burning. Instead put on a big smile and say “I’m fine! How are you?” Or make some stupid quip about having all 4 limbs.

Of course I won’t tell you about spending 20 minutes this morning layering on special concealer, foundation,  and powder to hide the eye bags. I do appreciate you saying how well I look though as it validates my make up skills.

Edit: before and after. Eek!
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Of course I’m going to shrug and say it could be worse, or there’s nothing I can do so why worry? These lines are so well versed that even if believe them some days. And actually only a couple of people get away with the following up of “and how are you actually doing?”. Mrs G, Mr Geek & Mr Gypsytree get honest answers. They are the glue that holds the bits of my mind together. Mrs Gypsytree aka Sherlock gets a special version where I don’t have to say much.*

How do I stay so positive?  Easy. I fake it. And apparently I deserve a bloody Oscar.

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The reality is that I got home today after a 12 hour stint at school + an hour of travelling in so much pain I found it hard to speak. I hit tired at lunchtime and pushed through tired into manic, then into plain weird where I got cross with Mr Geek for chewing to loudly near me, then finally rock bottom where I just cried buckets because I typed the Gypsytrees’ collective names. Just to help, I now can’t sleep as my legs are restless and ALL the painkillers aren’t helping my extremities or the headache that’s creeping up the back of my neck.

A huge part of that reality is being scared that if I rage about being in pain and physically useless all the time I’ll get boring and that stuck record will get old and eventually be left alone. So instead I smile as if my life depends on it. Because to a certain extent it does.

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On a much funnier note, a student at school went joy…err..hopping on my emergency crutches that I keep in my 1st floor classroom today. In his defense, he hadn’t considered why they are there, nor what would happen if there was a fire and my chair failed. Equally in his defense, with hindsight it’s quite funny watching someone describe a TWOC offense (taking without consent – which is usually reserved for vehicles) when referring to crutches. How far did he think he would get? We’re they going somewhere?  Why would you do that? Is there a crutch black market? The teenage boy brain baffles me. The hardest part : keeping a straight face.

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* Note to self: It’s OK to miss them. It’s not ok to get runny mascara over the Marvel Duvet cover. Captain America now looks like he’s been down the mines.