#weloveEU or at least we did before #brexit

It’s day 5 in the Brexit house and the housemates are still divided. Actually, this one has just about calmed down enough to write a coherent post. I’ve spent the past few days apoplectic with rage (that doesn’t do POTS any good btw) and swearing at more people than I cared to mention. 

There’s been so many more well written and eloquent posts describing just why I’m so enraged: this one in particular, so instead I’m going to do what I do best: take a deep breath and identify some practical things that people can do to make an attempt at shaking off this image that we’ve generated that all Britons are navel gazing racists looking to restart colonialism. We’re not. Some of us are really rather recent.

Firstly, we need to understand what we’ve done. Yes, all of us. If you are in the remain camp, some of us (and I hold my hands up) assumed this would never happen in a million years and were complacent, some of us (yep, me again) were too patronising to change people’s minds with our figures. We made the awful mistake of thinking that only the ultra right wingers & UKIPpers would vote out; we were wrong. Watch the video below & know we should have tried harder. I do believe part of my raging over the past few days has been feeling guilty that I didn’t do more to stop this shitstorm.

If you voted out (and forgive me, because I’m doing my best to be understanding & all in it together, but it’s not easy), watch this video. Listen to what this elderly woman is saying. Why? Because every out vote facilitated the racist behaviour that makes her too scared to leave her home. You might not be a racist, but your vote facilitated them. You might not be a racist, but you gave the right wing groups a mandate to hate anyone who isn’t white with a British sounding name in public without fear of public outrage. Why? Well, you wanted to take our country back.

Of course, this could just be one isolated incident of nasty pensioners smearing excrement on their neighbours door. Except, I present you with exhibit B, Twitter. I searched for the hash tag #safetypin  (I’ll explain why later)

Just a choice few – I do suggest reading the responses.

This person who might not entirely get where we left…

Or let’s go with blatant racism

OK, so what can we do now? Well, let’s start by acting like humans and being that person who steps in if we hear racist language. Don’t be afraid to use your teacher voice with kids trying to be big & clever – you’ll be surprised at how quickly a bully will stand down when they’re called out for exactly what they are.

An onwards to the almighty safety pin. It may seem like a limp attempt at middle class activism, but for now I’ll be wearing a safety pin in a visible place. Why? As a visual sign that you can approach me with a smile, a question, ask for directions, or if needed ask for help, no matter your race, nationality, gender, or sexual orientation. Importantly, the safety pin isn’t just a sign that I’m not a racist, it’s a symbol that I won’t just stand idly by. I will help you. Hell, I’ll risk yanking out my arms to get to you & I’ll run that bastard over in my wheelchair if need be.

Not everyone is on board with it.

Do I think it’s sad that we should need to do this? Yes.

Do I think it’s worth it if it just makes one person feel safer? Yes.

Am I still a European Citizen? For now & I’m looking at ways I can answer ‘yes’.

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Life In A Cage

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

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

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

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

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

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

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

My Accessible Google Map

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

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

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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 )

Why @SouthernRailUK Was The Last Straw

I’d got this. Mr Geek is working in London this weekend which means him leaving the house at 6.30am and not getting back until after 8pm. It doesn’t happen often and his employers are paying him extra for this unusual task.

I’d planned each day carefully so I didn’t overdo it. Today, Mrs G came over in the morning & we spent the afternoon either making the first stages of the kids’ homework models or having some nice downtime with them playing on the wii whilst I knitted / watched them. I even managed to dictate some more of my PIP form (Google Speech to Text I ❤ you.)

I was mildly concerned about getting a bath in before Monday, but as it turns out as soon as Mr Geek got in, he helped me run a bath and 8.30 is fiiiine. I don't need painkillers yet. (Can you hear that sarcasm?  I absolutely do. I could currently sob with the various bits that are screaming).

The plan had been for tomorrow to get up slow, take the girls to hobbycraft to get the bits they need to finish their homework models, and possibly even stop at the garden centre for cake. Then have a nice afternoon of finishing homework and washing children ready for school.

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Except the trains aren’t running past us tomorrow, because, there’s probably a Rice Krispie on the line or something. And in one short service announcement, Southern Rail have trapped me in my house for another 36 hours.

My wheelchair won’t fit inside anyone else’s car aside from ours, and my useless body doesn’t can’t even manage to propel myself half a metre along the pavement anymore, let alone to the bus stop. (I’m not even going to go near how mortifying it is asking an 11 year old to try & push me onto a bus).

I can totally get why people with EDS get labelled with depression because it’s just so fucking frustrating. I can’t take enough painkillers because I need to be functional in the morning, I grit my teeth to be functional then get trapped in the house. If I’m thirsty, I can’t even get a bloody drink for myself as I have to decide between carrying a glass and shuffling across the room. I’m so angry and have no way to let it out! I can’t even hit out or throw stuff because I’d dislocate my sodding shoulder.

I don’t want to live like this anymore. I want my old body back. This is not me. I’m sick to death of just waiting for the next dose of drugs. I want off this stupid EDS roller coaster.

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Medical Facepalm

I know I was going to stop being ranty, but just bare with me a bit longer because I had another facepalmy Dr’s appointment today.

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There are very few things that annoy me more than being patronised. Beware the woman in too much pain to stand, but whose tongue is still as sharp as ever.

I was running low on meds and wanted to discuss the unpleasant side effects of being on much dihydrocodeine, or if nothing else a suggestion for something other than sena and coffee. (Whoop! TMI!).

My useful doctor appears to have gone awol, so with only 3 days worth left I took a punt on the newly appointed person. I went armed with my mind map, which was for the best as eds was met with blank… then oooooh yes I didn’t hear you *frantic googling* (dude, seriously, I can see your screen).

We discussed various medication that had and hadn’t worked and agreed that diazepam does stop my muscle spasms & dihydrocodeine sucks as a long term solution (ha! ). We talked about Tramadol, but decided that it wasnt much different to dihydrocodeine (I have no idea – I’m assuming 7 years of medical school would provide that kind of knowledge). He was adamant that adding some gabapentin to the mix would help, so I agreed that we’d try a one a day solution alongside the current stuff.

We also looked for where my referral to Rheumatology has gone. They lost it. He called in senior gp to ask about physio and made a number of rookie errors…

When explaining to another doctor the scenario,  please use my name, not ‘this young lady’. I’m 35 ffs. I will accept this term again when I’m past 80.

I have not “taken to a chair”. We are not in a Bronte novel. I am “using” a chair to assist with mobility. I’m also using a knee brace & crutches. I just handed you a mind map to support your Google search…

Then the best one. “She is no longer able to teach”. And the tongue was unleashed… I AM still working. I haven’t given up my job. I JUST told you that I’m using the chair at work. You are not listening are you? You assumed.

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Senior Dr agreed to chase referral & gave me a number for physio so I can self refer(?!). He also apologised for them losing (not sending) the original referral.

I’m not keen on more crappy drugs and am feeling a bit defeated. I’m not sure what I expected really.

The Straw That Broke All The Camel’s Joints

Today I read a comment from someone who said that they had the right to make openly judgemental remarks about someone because that someone had put their thoughts and feelings into a blog post.

I’ll admit that I was less than tactful in my response. But I regret nothing. Blogging for many people is therapy and there’s enough crap in the world foe people start making snipey comments about other people. Be nicer to each other. You don’t know what kind of day that someone has had. How can we teach our kids not to bully, when playground parent cliques (even online ones) insist on being bitchy to make themselves feel better about their own life choices.

Yes, I snapped today and gave both barrels, but do you know why I couldn’t tolerate the hypocrisy?  It was nothing to do with being a good person. It was more about that little niggle being today’s last staw. This evening:

– my toes hurt
-my knees are throbbing
– my hips & pelvis burn from being on my feet & dragging teaching resources about on wheels
– my chest hurts when I breath in too deeply as one of my ribs feels ‘stuck’ & my upper spine keeps popping
– my shoulders hurt
– my hands and fingers ache
– my neck is sore
-I have a massive throbbing headache

I also resorted to using the wheelchair to do the high school tour for Beanpole as I was too exhausted to walk this evening. 

Oh and I have the meeting to discuss my mobility at work on Friday which is now causing rising panic.

So I’m a bit frayed around the edges which means that when you choose to dissect a parents worth because they don’t fit into your middle class mold of gender neutral as long as it’s overtly feminist parenting style, I may just state my opinions. Loudly.

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Head, Shoulders, Knees & Toes… All Hurt.

Day 1 of Roboleg at school seemed to go quite well. The cracking was significantly reduced and we’re down to an ache rather than hot needles behind the kneecap. Now THAT is an improvement! OK,  because 6th form aren’t back until tomorrow,  I only had 1 lesson, but that’s not the point!

The point is that I’m actually quite angry that I can’t skip about like a loony. And despite using a stick or crutches almost every day recently and genuinely considering buying a wheelchair to keep me going during conferences, I do not want to say the D word yet. I’m angry that I can’t just stiff upper lip this one. One lesson and 4 periods of prep and planning, then a spreadsheet fuelled meeting and I had just about enough spoons to poke a saucepan of dinner. The kids went to bed at 7.30 …. and so did I. My knee is good, but my back burns, my shoulder is frozen (That’s a new one) & my hands are throbbing.  I’m shot to pieces by a light day, and slightly worried how I’m going to handle a full 5 period day plus after school stuff.

I’m now using my blog as a ranty space and I know that, but arrrrgh I wish someone would either tell me how to get through a normal day without ending it tied up in wobbly knots, or no, actually just that.

Anyway, I googled feeling like a complete fraud using wheels and came across this.

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Now all I need to do is believe it.