My Ruby Slippers Are Defective

Today 

  • I didn’t want to move when I woke up in Dante’s 7th circle of joint pain hell.
  • I didn’t want to keep down breakfast
  • I didn’t want to sit in the car for 3 1/2 hours to Calais
  • I didn’t want to wake up regularly gasping as we braked & my back flew into spasm
  • I objected to paying extortionate prices for toll roads that had appalling service stops 
  • I didn’t want to lay curved into a contorted angle on the train whilst it rocked me side to side & scattered my ribs
  • I didn’t want to remain in the car for a further 2 hours to drive home (see waking up above)

I didn’t want to travel on a flare day. But I did. And now I’m home in our bed set up just for us having had a bath in my lovely accessible bathroom and a cuddle with the cats. 

There’s no place like home.
Addition: 

What made me flare so badly today? It was a combination of being in the car the previous day for nigh on 6 hours, then staying in the worst hotel we’d ever booked. The Sejours & Affaires clairemarias in Reims.

Here is the brochure photo of the 1 bedroom apartment from Booking.com – this is clearly listed under “facilities for disabled guests”.

And another of the kitchenette

So, we were expecting basic, but clean and functional as a stopover. This was billed as a wheelchair accessible apartment which we double checked by email & relieved confirmation of – this roughly translates to “is on the ground floor & has no stairs”.

This is my photo:

Aside from smelling distinctly of the goat farm (?!), the wall paint was peeling, the cabinets were grubby & the kitchenette and general location reminded me of when Mr Geek & I shared a student flat. In its favour, the WiFi was excellent (so, yes, very much like our flat). We slept on the metal sofa bed which had a mattress approximately the depth of a Kardashian which promptly instigated my shoulder coming out as I turned, my pelvis twisting, & a nasty clunk in my neck that made my hand go tingly. I eventually fell asleep laying flat on my back with my legs in a full lotus to lock my hips in place.
My magic touch with hotels was missing on this one. By the next morning, I wanted my Ruby Slippers. 

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My Ruby Slippers Are Defective

Today 

  • I didn’t want to move when I woke up in Dante’s 7th circle of joint pain hell.
  • I didn’t want to keep down breakfast
  • I didn’t want to sit in the car for 3 1/2 hours to Calais
  • I didn’t want to wake up regularly gasping as we braked & my back flew into spasm
  • I objected to paying extortionate prices for toll roads that had appalling service stops 
  • I didn’t want to lay curved into a contorted angle on the train whilst it rocked me side to side & scattered my ribs
  • I didn’t want to remain in the car for a further 2 hours to drive home (see waking up above)

I didn’t want to travel on a flare day. But I did. And now I’m home in our bed set up just for us having had a bath in my lovely accessible bathroom and a cuddle with the cats. 

There’s no place like home.
Addition: 

What made me flare so badly today? It was a combination of being in the car the previous day for nigh on 6 hours, then staying in the worst hotel we’d ever booked.

Here is the brochure photo of the 1 bedroom apartment:

And another of the kitchenette

So, we were expecting basic, but clean and functional as a stopover. This was billed as a wheelchair accessible apartment which we double checked by email & relieved confirmation of – this roughly translates to “is on the ground floor & has no stairs”.

This is my photo:

Aside from smelling distinctly of the goat farm (?!), the wall paint was peeling, the cabinets were grubby & the kitchenette and general location reminded me of when Mr Geek & I shared a student flat. In its favour, the WiFi was excellent (so, yes, very much like our flat). We slept on the metal sofa bed which had a mattress approximately the depth of a Kardashian which promptly instigated my shoulder coming out as I turned, my pelvis twisting, & a nasty clunk in my neck that made my hand go tingly. I eventually fell asleep laying flat on my back with my legs in a full lotus to lock my hips in place.
My magic touch with hotels was missing on this one. By the next morning, I wanted my Ruby Slippers. 

A Spa Day … with the kids

Thursday was mummy’s turn to choose the activity for the day. Mr Geek had been very vocal about wanting to return to one of the German baths during our stay, so we’d done a little research on which one would be most suitable for all of us.

Note: the photos on this post of Vita Classica are from the Therme website as they do other permit cameras inside (good thing too!)

3km from our hotel was the Casseopeia Spa which had excellent reviews & welcomed children. It was “textile free” which would mean letting it all hang free, but when in Rome etc. I started searching for more information on accessibility, but discovered that it is currently closed for refurbishment until October. Bum. I did a little more searching and found an alternative spa in Bad Krozingen called Vita Classica.

Interestingly, many of the reviews on TripAdvisor bemoaned the priority given to those with disabilities… cue cartoon style double take. Although mildly concerned that it might be a bit clinical, and rather relieved that they require bathing suits in the Therme (families cannot enter the sauna area other than Saturdays when it is “family day” as that area is textile free), we decided to give it a whirl. Just to double check, I used the Spa’s online chat facility to make sure I could get in.

The spa was about 8km from our hotel in Schallstadt, so I suggested that we make use of the amazing network of super smooth cycleways and get on our bikes. I’m feeling super confident that my wheelchair bike is up to roaming further from our base & this was an excellent test for the battery life (we ended up through a few interesting navigation decisions riding over 20k during the day which added to a battery that had already done a good few km during the week, taking the range of 1 of the two lithium batteries to just under 30km!).

Our fears about the spa being clinical were unfounded, although disabled facilities are indeed located 1st and there are a good number of prominent accessible changing & showering rooms. On entry, you can either take your own wheelchair in, or leave you chair & make use of one of the poolside chairs which means your chair stays dry!
There are a number of pools with most having a temperature of 34° (one has a temp of 29°, and another at 36°)

A static hoist is available for one of the ‘Blue Room’ pools which doubles as a water therapy pool (at 34°), and a mobile hoist is available if required. As the kids were keen to move between pools, we opted for Mr Geek lifting me from the chair onto the pool steps & bum shuffling down into the water with my waist float strapped on, then reversing this process to get back out.

Through the blue room is the ‘hot pool’ at 36° where we spent a good 30 mins just floating with Mr Geek massaging my neck whilst the girls enjoyed the calm. It’s too warm to swim, so instead you just floating about allowing the warm water to soothe everything. One mildly worrying thing of note was there was  need for them to have a sign printed stating no sex in the pool or showers! How many times does that need to have happened to warrant a metal sign?!?

The two outside pools were slightly cooler at 34° (and outside, so felt cooler) and were more invigorating. The first was a round pool with a variety of jets that slowly floated you around in circles. The jets ranged from weird tiny bubbles that turned the water fizzy, to stand up jacuzzi bubbles, to a lay down full body bed of bubbles (Beanpole & TinyPants made a request to remain there indefinitely. Nice try kids). I was particularly taken with this pool & happily floated in circles in the fizzy warm water for ages. The added weightlessness from the bubbles served to allow me more movement and I could gently cycle my legs releasing my hips & back. 

The second one outside pool was more of a round robin massage pool with shoulder water jets, sit & stand jacuzzi bubbles, a gentle rapid, and massaging waterfalls. The bubbles & jersey are cycled so not everything us on at once and people move around on the sound of a bingbong noise. It was in here, that I experienced a waterfall massage on my lower back & hips – by using my float & Mr Geek holding me, the water fell directly onto my lower back & pelvis at such a rate the my then dislodged SI was battered back into place with an audible clunk that we heard over the noise of the falls! It was deliriously good.

The weather began to turn & knowing that it would take a little over 30 minutes to cycle back, we headed out to get changed.

By the time we left it was starting to shower, but this slowed so off we went. We even had time to stop for a quick family by the river selfie because we DEFINITELY WERE NOT LOST.

In fact we were. We failed to follow a simple cycle route so ended up going all around the houses which was all fine and dandy until it rained. Properly rained.

Wet, cold, and looking like I’d entered a wet tshirt competition, we arrived back at our hotel with two very angry children who were placated by dinner & as much ice cream that they could stomach (a lot) and all was right with the world again.

So a spa day and a cycle on Leonardo with this view totally balances out the horrible weather and my left hip popping out after TinyPants climbed onto the bed for a cuddle spawning a whole night of tens & no sleep. But seriously, look at this view!

Centreparcs – Les Trois Forêts (France) : An Accessible Review

A version of this post can also be seen on TripAdvisor.
We visited Les Trois Forêts as a group of 7, with two children under 12 and five adults. Four of our party had varying physical impairments (using a variety of mobility aids from sticks to an actuve user wheelchair), and two who are Autistic. As such, we pre-booked well in advance choosing a VIP cabin highlighted as accessible for those with mobility needs to sleep 8 mid distance from the main centre (cabin 709).

Communication

With Les Trois Forêts being less than an hour away from the borders of Germany & Luxembourg, it is not a surprise to find that all signs are primarily in French with German translation. Most staff speak either. We made a concerted effort to speak in French & when we failed, the staff were happy to translate more complex requirements to English (at one point making great use of the translation app on my phone!). Like most places, a valiant attempt that ends in them just telling you to speak English is much better received than not trying.

Useful lines:

  • Je suis désolé – I’m sorry
  • Je parlé petite Français – I speak a little French
  • Je ne comprend pas – I don’t understand
  • Vous parlés Anglais? – Do you speak English?
  • Pourrais-je double vérification s’il vous plaît que la salle est accessible pour mon fauteuil roulant? – can I please double check that the room is accessible for my wheelchair?

Whilst I thoroughly recommend the Michel Thomas method for learning some basics, Google Translate is also your friend!

Contact with the outside world is limited as the phone signal in many areas is absent & WiFi is at a premium. There is public WiFi in the main centre & in the play barn, but it us rather slow. We sent a few texts home just to confirm we were ok, but the disconnection from technology was rather welcome after the initial withdrawal! (Even these blogs were written in the late evenings & stored away until connection to the world was restored).

Noise, Comfort, & Bugs

The main centre was only 1 bus stop away (busses run every hourish around the main circuit with 8 stops on the circuit), and yet there was very little noise near our cabin aside from birds and local church bells. Peace is not at a premium here, and despite housing over 1000 chalets, it didn’t feel crowded until you got to the centre. 

The cabin has an enormous living space with an open plan kitchen, plenty of soft seating and two large dining tables (one inside & one outside) – these were used extensively in the evening for playing cards. The soft seated area has a large TV with news channels in a number of languages and several local French & German channels. This also has a DVD player. There are also TVs in both double rooms.

Although we stayed at the end of July /August, the heat was not oppressive & many of the days were overcast. When the sun came out & temperatures were around 27° there is plenty of respite from this in the forest walk. There is no air conditioning in the cabins, so we arrived with some desk fans – these serve several purposes: they kept us all cool at night & deter mosquitos as the breeze moves the carbon dioxide breathed out around and makes it harder for them to find you.

Having read many of the reviews on TripAdvisor, we packed a plug-in insect trap for each bedroom, expecting a deluge of flying beasties. In fact, with the same sticky strip plugged in for the whole 7 nights, only a small number were caught and we were bitten once, if that (and can’t be sure if that was at night).

Our cabin was however, not one that looks directly onto the lake, so that may have an impact on the volume of insects.

We were visited by a fair few insects, a surprising number of baby frogs, several cats, and a multitude of moths ranging for tiny pale ones to literal behemoths! 

Food, Drink, & Entertainment 

We ate out a number of times during our stay. We were rather confused by the reviews bemoaning how expensive the food was – the prices are quite typical of the area and the quality was really quite good considering the volume of people served. The pizza resturant was a pleasant surprise with freshly made pasta & even allowed me to order a children’s portion. The all you can eat buffet had a good selection and was restocked continually until end of service (the kids & adults were very taken with the ice cream & chocolate fountain!). 

The on-site Carrefour was mildly.more expensive than the one 15 minutes down the road, but on a par for things like fresh baguettes, milk, & butter.

One thing we discovered was the delivery service where for €25 they will deliver a whole rotisserie chicken with garlic & rosemary roasted potatoes to your cabin (or you can take them away). They cited that this feeds 4-6 people. We ordered 2 to be sure and eaten with baguettes and some salad, this lasted 2 meals for 7 of us!

There are tonnes of activities on site and whilst many of them are extra, which is expected in Centreparcs & no different to any other site, there are a number of included activities: the train around the park, swimming & waterslides, the petting farm, play areas, & woodland walks. These kept us entertained for most of our time and we topped this up with a few extra activities and a day out. The parc heavily advertises the local animal park & rightly so as it’s very nice. (If you book your entrance through reception, there is an offer of reduced prices).

The Bike Shack offers a range of transport hire from toddler balance bikes, to adult mountain bikes. There are some more unusual machines such as the adult + child tandems. One useful hire for those with reduced mobility is the electric bike which allows you to experience cycling without failing on the hills (of which there are quite a number). In addition to just cycles, there are electric golf carts for either 4 or 6 people. Unfortunately, by the time we had arrived, both the option of electric bike and golf buggy had gone as they had all been hired. We were told that these are bookable in advance online, although are still unable to find how on earth you book them online! Prices are also rather steep for the carts with a 6 seater being €280 for the week with an additional €500 deposit returnable required.

Thankfully, 3 of us brought our own bikes and I had my electric wheelchair trike attachment & off road tyres, so we were able to run errands whilst the others in our party used the little train. Overall, the expense of a bike rack & effort of transporting the bikes was definitely preferable.
Accessibility 

Getting to the cabin was a little tricky as whilst there is step free access, the slope to the cabin is quite steep with a hairpin bend. Navigating up by wheelchair was made easier by using my electric trike attachment, although the walking stick users were unable to get assistance aside from taking it slowly.

Once in, the cottage is very similar to the standard VIP cottage layout. The “accessible end” is the end with a twin & double room attached via a bathroom with Turkish bath (steam room / shower). In here, the bathroom is larger with a toilet rail – this is a single bar on the right, which appears to be standard across all disabled toilets. There is also a shower seat in the Turkish bath. For those with heat intolerance who sigh at the inclusion of a steam room & sauna in the luxury cottages, these both come with adjustable temperature settings, so we were able to enjoy the experience at much lower temperatures!

The layout of the cottage is open plan which makes navigating between areas easy and there is step free access out onto the decking. There is even a ramp down onto the grass. The kitchen is also open plan with the option of storing food in lower cupboards. The surfaces are at standard height, which suited us with only 1 wheelchair user, but meant that I couldn’t use the microwave  (which was above head height) or hob. These were small niggles negated by help from family and the easy to use dishwasher & large handle taps throughout. The addition of a Dulce Gusto machine was actually very useful as I could make my own hot drinks without the need to lift a kettle; buying the coffee & hot chocolate pods for this is highly recommended!

The double rooms aren’t particularly accessible in terms of wheelchair access, although we coped with this by shoving the bed over towards the wall a bit & me not using the dressing table (with 5 bathrooms, there was plenty of alternatives!). The twin room was much more suited to wheelchair access, however this isn’t suited to married couple use! 

Both ends of the cottage have whirlpool baths. With this in mind we packed my inflatable bath lift. Unfortunately, the bathrooms were not big enough to accommodate my wheelchair and close the door so I was unable to get in or out of the tub with any privacy. Neither baths had additional handrails which made this difficult for all people with mobility issues to use them. This was a shame & rather an oversight for a cottage specifically cited as accessible.
The real winner was the accessibility within the swimming pools. There are two disabled changing rooms with full changing beds & accessible showers to compliment the accessible showers alongside the main showers. To access these, you need to take your chalet key card to reception as a deposit & you are handed the key to open the changing room (“avet vous une clé pour le handicapés vestiaire si vous plait?“). In the pool area, not only was a hoist available, but as the main pool was stepless, a set of two water wheelchairs were provided for use by anybody who needed them. The lifeguards were happy to show us where the chairs were & had a supply of adult floatation jackets if needed (I have my own floatation belt & they radioed to other lifeguards that I was in the water in case I was uneasy about being in the water when the wave machine started). I was able to leave my own chair by the lifeguards station & be wheeled directly into the water, or use my own chair to go around the main areas to watch the children hurl themselves down slides, or the rapids, or along the water climbing wall!

Overall 

This visit has made me a centreparcs convert. The insular nature of the place perhaps stopped us from exploring & experiencing the area in the way that we usually do, and I was utterly content to remain within the parc grounds. However, we never once felt penned in, nor compelled to do anything other than relax and enjoy our time.

I can definitely see us visiting again.

Don’t Touch My Wheelchair

There’s been a lot going on recently and within those busy moments there are flashes of white hot fight or flight temper. As a rule, the flash remains in my head & I either bury it, or explain calmly after, but all flashes have a common theme: don’t touch my chair.

For ease of reading:
I have Ehlers-Danlos Syndrome; a genetic condition which affects connective tissues throughout my body making them stretchier than they should be (this includes tendons, ligaments, skin, muscle, internal organs). I dislocate or sublux (partially dislocate) daily and it hurts. EDS comes with the extra fun of IBS (irritable bowel), POTS (Postural Orthostatic Tachycardia), and for me, dysphagia (difficulty swallowing). Because of the pain, hip & pelvis subluxations, and fainting I use a wheelchair pretty much full time aside from trips to the loo upstairs where I use crutches to drag myself the full exciting 5m.

So, my chair is my mobility, it’s my pain relief, it’s my route to remaining conscious! So why the anger? May I give this in a few formal requests? (I’m going to anyway, that was more to allow for a personified narrative – I could almost pass my SATS with that paragraph…)

Don’t push my chair without asking
Sam, my ever understanding lady summed this up in words even the 7 year old demanding to push me around like an oversized doll understood.
“You don’t push someone’s wheelchair unless they ask you to. You wouldn’t let someone puck you up without asking would you? It’s just rude.”
I make a habit of having my handles on the chair tucked away because I hate it.

Firstly, it makes me feel very vulnerable when someone physically moves me either unexpectedly or against my will.
Secondly, I generally have my hands on the rims & if you move me forwards without warning, I may still be gripping and you’ll have a dislocated shoulder, elbow, or wrist on your conscience.

Mr Geek forgot himself today and did just this. He whizzed me up a ramp onto the train without warning & faced a very stern don’t touch my bloody chair conversation. Mainly because I was tired, in pain, and having been in ultra-alert mummy in London mode all day couldn’t tell who was pushing and panicked.

Don’t  pin my pain on the aid that relieves it
My pain management team appear to be at a professional crossroads. If they were married you would probably suggest seeing a counsellor. Instead, they played a game of professional ping pong with my appointment which as a professional, I found deeply unsettling.
One of the ladies is a pain specialist. She is quiet, encourages my progress (albeit slow), advocates pacing and patience.  The other is a lead physio who is very much the opposite. She is an advocate of movement, and pushing through limits, and overcoming mental barriers. Personally, I find her overbearing and generally cannot get a word in edgeways.

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When I saw them this week I happened to be circling the higher eschalons of the pain scale. I find it difficult to articulate my needs when I’m breathing through it. I’d managed to explain jy fears about loss of sensation (boiling water on the foot) which was taken seriously, and lack of sexual function which was dealt with in true British fashion.

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Whilst demonstrating a move to help me open up my pelvis & lower back, she noticed that I was uncomfortable in the chair. And here it came:
We must get you out of that chair. Being sat in that is what is making your back hurt!” Now, to an extent I do agree. Being sat still watching a loud person wave their legs in the air for 45 mins makes your joints seize up. Anatomically, the seated position does put pressure on your lower spine. So I asked her how we would work on that.
What’s about standing up at work?”
We’re going with a no there; I’ve already fainted in my classroom twice this term despite being sat in my wheelchair  and that’s scary for both me and the kids. In fact, it’s what prompted me to get the reclining back for the powerchair.
Can’t you just walk around at home?”
I’d love to! It’s my ultimate goal to abandon the chair in the house, but standing feels like there’s glass in my hips & walking with crutches not only causes pain (and tears), but runs the very real risk of a fall as I can’t feel my feet & have to really focus on where I’m putting my legs.
OK then, but we need you to open up that area, so lying down flat as much as possible with lots of stretching”
Again, unlikely at work (Just picture that classroom scene!), but doable at home… but stretch as far as possible?!
Earlier, she’d been quite offended when I told them that my Stanmore referral was rejected due to waiting lists & I felt left in limbo. She scribbled  furiously whilst telling me sharply that she dealt with plenty of Hypermobility & didn’t need London telling us what to do (🚨🔔AWOOOGA! Alarm Bells!🔔🚨).

This all sounds like a cop out, but I know my body & that pain in my hips & back isn’t from the chair (unless it can time travel back to 2004 when my 1st disc went). I also know that pain is not gain with EDS, and when I “push through”, I end up damaging something.  I do push myself physically by hauling my arse to wheelchair racing & swimming each week. I use the manual chair when I’m not at work, self propelling to the point of exhaustion & audibly clicking shoulders.

I’m doing my best, but sitting allows me to function. The chair damn well stays. I will not be confined to bed & stop working so I can point my toes again.

If at all possible, I’d like to enter the building the same way as everyone else, not via an extra 1/4 mile walk and via the bins.

Part of our lovely day out in London was dinner (we had hoped it would be celebratory, but we won’t hear about vague thing we cant talk about yet until tomorrow or Monday). As a special treat, we’d booked a table at Marco Pierre White’s Italian restaurant on the South Bank. I was beside myself with excitement as I love some of the TV stuff he does.
The entrance was beautiful with just 8 minor issues – all of them steps. The solution was to walk to the back of the hotel where there is a ramp.

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And bins. And no clue on how to get in.

Once in, it was just bliss! The staff were helpful & made every effort to accommodate us. And the food. Heaven! I utterly second MP’S recommendation of the bolognaise pizza!

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If I need help, look where you’re going!
I started writing this blog post about 12.30 am & it’s now 3.15am. Why aren’t I asleep?! Well, earlier Mr Geek helped me down a curb by easing me down backwards, misjudged the height, didn’t see the hold in the road & the chair dropped down the height of the curb plus hole.

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As my wheel touched down, my left hip popped out (unusual, it’s usually my right side) & I yelped. And swore. Then used the chair to wiggle it back in & had a little cry. Painkillers were duly administered & I assured poor Mr Geek that it really wasn’t his fault. Yes, he’s a bit clumsy & cakhanded, but London appears to have not mastered the art of the drop curb yet…

… and where they have included a drop curb, Southwark  Council has a funny idea of the best place to situate recycling bins.

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12 hours and 3 doses of dihydrocodeine  & oramorph later and I still have knives in my hip and sleep arrives in 10 minute naps until the muscles relax & go back into spasm & wake me up again.

Other quick & easy ones.
Please don’t move my chair out of reach if I’m on the sofa. Ffs.

No you can’t ‘have a go in it’

Please don’t suggest adaptations, then get huffy when I say no. I know you’re trying to help, but I’ve got it set up my way and tyres “just” 1/4 inch thicker will rub against my skin.

Also, don’t touch my chair.

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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