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 )

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It’s Crap Feeling Like Crap At Christmas

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

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

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

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

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

Other useful numbers include:

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

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

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

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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.

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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.

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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.

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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

It’s Easy Isn’t It?

It’s very easy to get frustrated when I can’t just get up and do something myself. This gets magnified a gazillion times when you add hormones into the mix.

Just for reference the week before “that week” involves extra wobbly joints, extra joint pain, not so random CRPS flares, breasts that swell and feel like they’ve been used as speed balls, retention of enough water to solve a sub-saharan drought, and just a teensy bit of irrational anger.

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It’s very easy to forget that you picked me up from work, cooked dinner, shuffled the kids to bed, and because of all that washing my stinky wrist braces was not high on your agenda.

It’s very easy to forget that we’re separate beings, so your day hasn’t been spent listening to my squeaky wheel so you did forget to oil the bearings because you haven’t heard them squeak since this morning. It’s also easy to forget that a week isn’t actually that long since I mentioned it – you’ve had other plates to spin like making sure my chair battery is charged, scanning every medical letter that arrives, planning our combined diaries, getting me to doctors appointments,  monitoring my medication, bringing me water & reminding me to eat…. and generally functioning for two when I go vague.

It’s very easy to forget that your job is important too, probably moreso and that you’ve been working on my time schedule for the last half term (the last 6 years tbh) which impacts on your work. This is a very valid reason why the Christmas cards that I bent my fingers out of shape writing at the weekend are still sat on the footstool.

It’s very easy to forget that although we were sensible and went to Amazon for all the Christmas shopping, someone needs to unpack these boxes that are invading our bedroom, wrap them & hand them out, and invariably that’ll be you.

It’s not easy to forget that I need you. I don’t want to need you, I want to want you. Needing you puts me in an uncomfortably vulnerable position, but if I have to need someone,  I’m glad it’s you.

I’m sorry I’ve been an irrational psycho this week xx

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The Good, The Bad, and The Uncomfortable Truth

I have spent the past fortnight working myself into a panicked frenzy over the Occupational Therapy appointment. Truth be told, a few stories of social services threatening to take away kids planted seeds of terror that grew faster than bamboo. I hate that my kids have to help me out. At 9 & 11, they shouldn’t need to help their mum get dressed.

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After my less than productive phonecall with social services, I was less than receptive. And despite that, we’d spent a full week cleaning (we meaning Mr Geek) because clearly cleaning the house will make you a better parent.

I’d made an effort to look like I was totally coping when she arrived, despite having been trashed at work and arriving home to find that Dad had collected TinyPants from school early with a fever.

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Then I was utterly bowled over by her being totally supportive. She completely saw through me pretending to be fine (and even wrote down me wincing as my stomach cramped – some idiot had abandoned the meal replacement and tried to feel better at lunch by eating mac & cheese. There’s not a lot less fodmappy and I paid for that mistake for 9 whole bloated crampy hours).

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She spoke to me like a real human – not pitying, but practical. And it took that one conversation to flick on the light bulb that if I got over myself and started using the chair in the house instead of doing the death shuffle on crutches, I might be a bit more independent.

It hadn’t occurred that not walking might give me the ability to make myself a drink, or help with the dishes, or just get to the loo without wanting to cry. Whilst the crutches are important because I want to retain some muscle strength, I’m buggering up my shoulders and wrists.

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So why don’t you use the chair in the house? Well, mainly because of the doors (and my pride) – I can’t get my chair in the front door, or out the back door to the conservatory where Mr Geek and I have our living space (my parents live in the front room). And in one sentence, she solved it.

“OK,  we’ll order you 2 ramps and whilst we’re at it, a wedge so you can use the patio”.

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Say what you like about having to wait for British health care, how many uninsured Americans would just be given house adaptations to help them feel more normal?

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I’m not a great talker one to one and get very nervous, but she just knew her stuff. It was one of the first non-specialist appointments where I didn’t need to explain EDS. She’d already spent time looking it up (whoa). She was just great, and even offered a full copy of her report so I could add it to my PIP evidence.

It may take a while to sort out the ramps, but I’m not sure I’m totally ready to use the chair at home. I can see why it would help, but it’s a bit scary. I may try the manual one inside for a while just to get used to doors and stuff. Hey, it may let me stay up for a bit longer in the evening rather than going to bed at the same time as the kids!

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This all actually happened yesterday but I was too tired and in pain to write. I’m coasting on my painkillers which just aren’t cutting it for working full time. I’m struggling to find something actually effective and it’s a long old road with the GP to find the right one. For now I’m sticking with combining dihyrocodeine and co-codamol as a cocktail with gabapentin and the other non-pain bits whilst I wait to see the GP next week to return the tramadol which was about as effective as a tic tac. I could see them sooner, but work is getting in the way (me with parents evening tomorrow & Mr Geek with working in London on Friday ), so I’m going to just have to hang on in there for a bit longer. I’ve kept it pretty much under control up to now, but today I nearly cracked.

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It’s hard to describe the pain, but it’s similar to when I was an idiot on rollerskates some yars back and fell, promptly putting my arms out straight which on impact with the floor dislocated my elbow, fracturing it on the way back in. That sort of gnawing ache that makes you feel nauseous. Now apply that to multiple joints and other bits you can’t quite identify and you’ve got how it feels for me.

There are more and more nights where I sit up randomly rubbing joints or pushing them back, talking myself round that I can get through another day at work. Tonight is particularly hard. I’m tired. Proper tired. And yet in too much pain to sleep (hence blogfest) or remain still because twitching and twisting seems to help or at least give the impression of crawling out of my body. By Thursday I’m generally a mess anyway, but tomorrow holds a 13 hour day of teaching, then meeting, then parents evening. What I want is to curl up and stay in bed until the worst of this wave passes. What I will do is grit my teeth, slap a smile on and get on with it.

My favourite phrase is “this too shall pass”, except it’s not passing despite handfuls of opiates, and putting on a brave face is getting really hard.

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That Time I decided not to leave the house again (or Accessible My Arse)

I had a training course to attend today for work. I’d been looking forward to this as it meant going back to school to do coding. Heaven.

The plan was that Mr Geek would take the day off work and come with me as my assistant in case I had difficulty. (We envisioned this as me not being able to get on a bus, or getting lost, or getting faint and needing help).

What I forgot is that today is Thursday. And Thursdays don’t like me.

We left the house at 7.15am to drive the 30 minute journey to Hassocks station as it is more accessible than our local one which has stairs all over. 30 minutes… nope. 60 minutes. I’m now running late which doesn’t work for me at the best of times. But once we were on the train it would be fine!

Hasocks station ticket guy:  have you booked assistance?  … no, despite using the route planners to highlight we needed a stepless journey, there was no indication that we needed to warn people in advance that we were travelling. Someone didn’t learn from her trip to Ireland that I can’t just be spontaneous now. I was already a bit sensitive about being late, so wasn’t bowled over by being singled out as making his day more difficult. But they got the ramp out and I wheeled into a middle section of the carriage.

Now, a bit worried that we’d miss registration, I emailed venue to let them know we’d be late. All would be fine.

As we pulled up at Haywards Heath to change for our London train, Mr Geek had to call the guard for me (how do you do that from inside the train on your own? ). For future solo journeys, may I suggest a flag on a stick?

Getting off the train was fine, but up onto the Gatwick Express was a different thing entirely. I got stuck on the ramp going up as the train was much higher. Mr Geek had to push me up. This is the kind of thing having a power chair was meant to avoid!

Gatwick express actually has bus style seats for wheelchairs so you’re not put in with the bikes which is nice, but unless you have a slimline chair, good luck getting through the doors!

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Trying to get off at Victoria was verging on hilarious. To get out, you need to tackle a right hand turn the width of the chair, then a narrow passage and doorway out. Now, when you have a turning circle of a small country and the spacial awareness of a bull in a china shop, that’s not a fun task. After a three million point turn and getting very flustered I emerged from the train. Now even later. Bugger.

Step 4 of 5 was to get a London Bus to Covent Garden. The No 24 London Bus had an automatic ramp that just popped out which was great because there was no fuss getting on! I have yet to work out how you get onto a bus and back into the official space whilst people fuss around you and before the bus pulls away. I ended up facing forwards & figured that if I get thrown forwards, I at least have a soft thing to smack into 😉

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(Note that time… we left the house at 7.15, my course started at 10am. Lesson learnt here is that travelling by chair requires at very least 50% extra time for getting stuck, people faffing with ramps, and wheelchair accessible trains with a tiny right turn that touched the wheels of my chair on both sides – no hope of you have a self propelled manual chair).

By this point, being jostled about on trains and busses is causing enough pain to make me feel sick. Handbag full of drugs at the ready!

I’m late for my course, I’m in pain & I’m not wholly sure how to get my chair off of the bus. It turns out that rush “hour” in London ought to be referred to Trading Standards. Our top speed was slower than my chair! It took us 45 minutes to do 2 1/2 miles!

So 4 hours to get here. And now it’s raining. Ffs.

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Final step was a 10 minute “walk” which involved me grumbling about Mr Geek having told me that the weather was ‘mild’. I was cold, wet, and eye level to every cigarette in London. Btw – umbrellas are a wonderful invention,  but if you put them in front of your face, the angry woman in the wheelchair you’re walking into is going to tut at you. And flinch because that thing is pointy!

Having emailed a month in advance to double check that the venue was accessible, my Thursday just continued. The training itself was on the 1st floor (woop! Lift) & we arrived just in time for coffee. The one and only accessible loo was downstairs, so off I trundled. Then realised that the lovely wide doored accessible loo was behind two narrow wooden doors. No prizes for guessing who smacked her hand on the doorframe.

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Just before lunch, the trainer called a member of staff to explain how to get up to lunch. She arrived and explained that the dining hall was up on the 2nd floor but there were stairs, so could I leave the chair at the bottom and walk up? …. That’s sort of not how the wheelchair thing works? Ok, yes if I’d had my crutches I could’ve gone a few metres, but not up stairs & not in my current state. We gave up and went out to the cafes along the road.

Back down in the lift with more attempts at reversing out without hitting the stairs that were placed conveniently at the door of the lift. It was 1pm and I was ready for bed (and still really cold).

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Whilst I got stuck in to some afternoon object instantiation with what little brain power I had left, Mr Geek went out to the shops in search of something to keep me warm and dry and returned with a lovely woolen shawl & an emergency poncho. No there are no photos, you’ll just have to take my word for it that I looked hot. Or at least slightly less cold.

Getting on the train back at Victoria was  much easier and we were helped into the wheelchair bay where we found this:

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Super helpful! Especially as when it fell over a lovely lady chucked it out of her way towards my knees. (Can you see the lovely shawl? It really is lovely ). So still absolutely freezing, exhausted, and more and more palpitations, I vented to the world on a blog post!

What have we learnt from this?

Public transport is terrifying

London is moreso (people / cars/ noise / lack of drop kerbs )

People kicking my wheels or tip wheels drives me to a state of irritation that mirrors Dr Jekyll & Mr Hyde

I’m basically useless without Mr Geek

Mr Geek is deathly accurate with an umbrella if you get too close to me

I can push myself to keep going for hours longer than I think is my limit.

I will pay for this tomorrow.

One day I’d like to write a positive blog on disability and access and generally falling apart, because even I’m bored of my incessant whining. That day will not be today.

Stop using the C word!

No, I don’t mean that one. Although,  don’t use that one either. What I am attempting to say is that I don’t care how many sleeps it is til Christmas. Put your Elf firmly on the Shelf. Holidays are coming later (it’s not later). And if you try decking my halls, I shall firmly deck yours.

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(I know it’s 2015)

I am looking forward to the actual day. This year promises to be a chilled out, Onesie wearing festival of inappropriate giggling. It’s being hosted by my sister-in-law and brother-in-law so we’ll be surrounded by good people  (and lots of whom have whacky dietary requirements that make me look normal).

I’m just a bit anti this year as the idea of all the preparations are a bit overwhelming. Shopping with no spoons is daunting and the idea of going into crowded places, trying to get into inaccessible shops where people’s elbows are at face height is enough to make me go a bit bah humbug. So I’m putting it off until I’ve finished all the DWP paperwork  (Seriously,  nothing shouts ding done merrily on high as a disability assessment form).

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Give me a few more weeks and confirmation that mince pies won’t make me hurl or cause my stomach to burn my oesophagus like a really ineffectual branding exercise.

Until then…

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