The Most Accessible Mountain in Europe 

Four generations ago, my paternal family made a long journey by foot to Canada from Germany. They originally lived in a small village near the top of a mountain in the Black Forest bearing their name. Until I married Mr Geek, I too was a Feldberg. 

I don’t know a great deal about the background of my paternal family and with the magnifying glass of a disabling genetic condition, I grabbed the opportunity to connect with my past with both hands.
Feldberg stands with the highest peak of the mountains in the Black forest. Unlike the mountains of stereotype, it’s covered in trees until you reach the peak where instead of rock & bare nothings, it’s grass; as the name suggests “Feld-berg” = “Field-mountain”.

To get to the peak, you can walk up the wooded, or meadow pathways. Or, like us, you can take the Feldberbahn to the top. In the summer months the ski lift chairs are replaced with gondolas which are not only enclosed & safe for children, but accessible for wheelchairs! They even stopped the cable cars & popped on a ramp to help me in.

It was a beautiful ascent even if the weather was cloudy & at 2200ft at the entry to the cable cars, flipping cold! (13° as opposed to 23° at the hotel). By the time we reached the top, we were a little over 3000ft above sea level and the wind let us know that we were on top of the world!

From up here, you can see across the Alps and breathe in the smell of the forest. Someone recently suggested that no one likes for trees & would want to protect them – well, take a look at this view & choke on your words.

It’s difficult to genuinely give an idea of what it was like to be up there, but if you have (or want to download) the free Google Cardboard Camera app, you can download my panorama photos here (The new Cardboard camera let’s you take a photo in 360° but also records the sound to go with it to enhance the experience)

By the Feldberg viewing tower
By the monument

Unfortunately, the Tower which contains the Ham Museum (yes, you read that correctly) is not wheelchair accessible, so I sat in the sheltered of the entrance. Whilst I was sitting admiring the view, the clinking sound of bells arrived and holy sound of musicals, a herd of billed cows ambled to the grass at the top of the mountain & stared at the visitors with the look of disinterested confusion only a cow would give.

Taking the cable car back down the mountain, we went in search for lunch. Walking past the more touristy places & gift shops around Hotel Feldberg, we found a much older guesthouse just along the road. We were very pleased to have ventured a little further as we were greeted by the owner who happily made space for us & my chair. It was enormously inaccessible  (I had to only hope that I didn’t need the loo as there was no way I was getting in there!), but oh my word the food was incredible!

As someone who doesn’t fate well with onions, or heavy meat dishes, I’m racing through my Omeprazole at a rate of knots, but the Bavarian meatloaf with roasted potato was soft & tasted beautiful. Vaguely like posh spam. My waistline is suffering! I’m even able to enjoy the local beer as most varieties are available as alcohol free & taste just as good! This is great news & means I can sip away & not interfere with my daily doses of poison.

Sadly, our visit was cut a little shorter than I’d hoped as I was feeling lightheaded & exhausted. A combination of altitude, carbs, pain, and overdoing it kicked me up the arse and I lost the ability to function any further.

After a final loo stop & a dose of painkillers, we headed back to the car as it started to rain lightly with me making noises about wanting to visit the Feldberg schnapps museum on the way home….

… I woke up with 5 minutes to go before we reached our hotel. Ah. Bugger. However, I went to bed tonight contemplating where to hang our Feldberg cuckoo clock. I may not know any more about our family, but I do have an image to attach to the spattering of stories I have heard.

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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.

She’s Got a Ticket To Ride

This week we gave been holidaying in De Nile- it’s a lovely place where everyone is happy & having lots of fun goddammit… it’s a delicate bliss that is easily broken into the usual stomach knotting anxiety by ‘I know you’re on holiday but…’ texts and fretting that the kids (and us) are causing too much noise or dashing plans for the family we are holidaying with. We are acutely aware that it’s their holiday too, so don’t want it to be all about us. When Squooze’s shower broke, we were offered a change of chalet – Mr Geek explained that he’d turned it down as it wasn’t the end of the world & the hassle would only be worth it if the shower mummy used was broken. I could’ve smacked him! I know he meant that I can only use 1, whereas other people can share, but I hate being the special snowflake. He means well, but ffs.

Our actual location is Les Trois Forêts, the newest Centreparcs in France on the very East near Nancy about 45 minutes from the German border. It’s everything the adverts promise & a little more. It turns out that centreparcs is my ideal holiday location; I’ve been resisting the calls from friends for years, but my ideal day of breakfasting, then a bike ride along smooth tarmac / smooth forest trails, lunch, & then maybe a swim in the warm pool is all catered for perfectly here.
We cycled along this river today.

My chair cycle has been a permanent feature on my wheelchair this week. So much so that when I offered to take Mr Geek’s broken inner tube back up to the cycle station on my own, he agreed with no hesitation. To recap: I was able to ride to the main centre on my own without anyone fussing. Leonardo (my electric wheelchair cycle) feels like I’m just part of the cyclists here. I can whizz about with my off road tyres on the wheelchair which take almost all of the bumps away, leaving me free to quite literally feel the wind in my hair. Ok, he has a top speed of about 12 mph, and going up hill can be a struggle, and some people insist on staring, but he’s my freedom. Let them stare.

It’s interesting how much we pin on our holidays. These 2 weeks underline the other 5o where we struggle with things day to day, so somehow the other 2 must be perfect. For my part, I am pulling the “I’m fine” card and pushing myself to my absolute physical limits which has already landed me with several nights unable to sleep from pain that I refused to show during the day. Mr Geek snapped several times this week, but today he verbalised his holiday woes – following losing an offspring in the forest, (we didn’t actually lose her, she just cycled so far ahead that we had images of her being eaten by wolves & us making television pleas for her to be regurgitated by the bear that ate her. Usual rational & calm parent reactions), he stated that he would like to have some time where he didn’t have to play UN, or panic about what a child was doing. And he was right. He has been running about trying to make everyone happy – he was rewarded with chocolate & banana crêpes & an hour watching the children continue their goat induced euphoria in the petting farm whilst we leached the WiFi and played Pokemon Go  (the chicken coup was a PokeStop & the enormous slide a gym!). We are both reasonably solitary creatures and he is suffering more than I am with the attack of ‘socialising’. 
Interestingly, I seem to be managing physically better this week, although I’ve had a couple of flares and kept these hidden under the guise of “sleeping in”. I’m keeping up my standard routine of painkillers & TENS, but I haven’t had more than a couple of dislocations this week. I pulled my elbow out a couple of times, but as far as major injuries go, I’m doing really well.

Part of my self care in that respect was to have an “early night” last night. Actually, what that entailed was reading a bit of my book then napping on the sofa from 5pm until dinner, eating a small dinner then heading to bed with the TENS machine running a variety of cycles on my hip & pelvis, and reading well over half of my book in between naps well into the wee hours. I’m reading The Druids Sword which is part of the Shannara Chronicles- brilliantly written, but perhaps out to come with a few TWs. Mentally & physically, it was exactly what I needed & left me with a full compliment of spoons for today. 
Life is not always easy with a heightened awareness of other’s emotions (such as it is with anxiety), but we are with family in beautiful surroundings & enjoying land & water. It doesn’t have to be perfect, because what we will remember is the riding through the forest & rescuing a small child from a locked toiled (always carry a 2p coin for this purpose!) & the late night card games & the food & feeding the cats paté. And of course the goats. We’ll always have the goats… note to self: must double check Beanpole’s luggage…

Poulet Soup for the Soul

I’ll be honest, many of our adventures out to “accessible” venues have proved to be less than successful, and having visited a UK Centreparcs waaaay back in 1993, I had images of those days of camping cots in a moth ridden room returning. Frankly, TripAdvisor had not made me confident with tales of overcrowding & poor upkeep… so it was with trepidation that we headed to Les Trois Forêts, near Nancy.

We had opted to drive here over 2 days to give me a chance to survive the journey. I’m not ready to fly again & at least in a car, we can manage our own schedule, & the only person assisting me is Mr Geek. Having stopped over in the Ibis Hotel at on the 1st night, for the 1st time in months I was faring better than Mr Geek. The poor soul then drive us for a further 6 hours from Valenciennes through Belgium, Luxembourg, and eventually back into France to just past Nancy where our first destination lay waiting. 

We were handed a smart card for our chalet & told that with my blue badge we could park outside the chalet & leave our car there. We had booked an accessible VIP chalet for 8 as we were spending the week with Mr Geek’s parents & youngest sister. They were braving the journey in 1 and managed the whole thing in just 13 hours (?!?). When initially exploring the idea of centreparcs we’d looked at the European sites as a cost comparison- we were keen to go abroad, and OMFG the prices on the continent were comparable to a week (7 nights) in France in a VIP cottage for 8 equalling a midweek 3 night break in basic accommodation for 4 of us in the UK! Absolute no brainer.

The slope down to (and up from) the chalet was rather steep and had an iffy hairpin bend, but once inside, it was HUGE! There was an enormous living area and two massive dining tables; one inside & one outside. The gangways were nice & wide leaving plenty of room for people.

The kitchen is open plan, but not built for someone at sitting level so whilst I could operate the provided coffee pod machine (massive bonus as this neat I was able to make my own drinks), I couldn’t reach the food cupboards or microwave/oven. I can’t lift pans etc. anyway without injuring myself, but biscuits being deliciously out of reach is a bit mean.

The bedrooms were perfectly split into a double & twin with connecting bathroom with a bath, shower, & Turkish bath, a double with a bathroom & shower + sauna, and a twin with bathroom & shower. The connected twin & double were the designated accessible rooms with handrail for the loo, shower seat, extra room in the twin, & just enough room for my wheelchair in the double once Mr Geek had shoved the bed over a bit. He would definitely prefer to share a bed than have extra wheel room & I wasn’t going to.deny him that. The beds themselves were far from the camping cots of memory. Our double had a fully sprung mattress with an extra 2″ foam topper & two pillows each! (Which were added to the collection of pillows & wedges). This was certainly more hotel than holiday park.

As we were all exhausted on the 1st day, we opted to eat in one of the on-line restaurants. Again, TripAdvisor was filled with stories of unclean surfaces, unpleasant staff, and terrible food. Having rocked up at 9.30, we were seated, our order taken in my addled version of French (ha! Brainfog means I can barely speak English, and here I was attempting to get by in a place where mainly French & German is spoken). The staff were brilliant, the food was fresh (as in proper fresh pasta) and they were more than happy for Beanpole to.order an adult dish whilst I had the kid’s menu. The main AquaMundo, which is the main dome housing restaurants, shops, & pool was also entirely accessible through level access. There were a few cambers to contend with & a mahoosive speed bump outside (that was actually understandably protecting cables), but I could propel or be pushed with very few jolts. Their efforts were appreciated. 

The 1st night, we cracked open the mosquito traps as again TripAdvisor had warned is of plagues of mosquitos of biblical proportions. With all of us sensitive to chemicals in the air, we’d bought UV + flypaper style plug in traps and duly plugged them in. Whilst I shall sing their praises separately (the light really does attract the insects which promptly get stuck to the paper behind the grill – no nasty sizzling, just change the sticky cartridge), actually there was only need to catch a minimal number of mosquitoes. We did have plenty of other wildlife hanging about the chalet though – baby frogs in the grass (and decking), and a friendly cat who quickly learnt that the suckers in 709 would exchange paté & salmon for allowing a quick rub behind the ear.
Further surprise accessibility wins were found on day 2 when we ventured into.the AquaMundo swimming complex. At this point there were calls for “I do hope you’re going to blog this…”. Well, yes. Well equipped disabled changing rooms are supplied and kept available by exchanging your chalet key for a special access key allowing you to unlock the changing room doors. Inside the roomy area is a bench, changing bed, shower & stool (no hoist). Already impressed, we asked one of the lifeguards how I could get into the pool expecting to be pointed towards the usual ducking stool. Instead, I was lent the use of a pool chair- leaving my own chair by the side, the pool wheelchair is like an oversized 3 wheel pushchair which can be wheeled directly into the sloped pool until I’m deep enough to float out (I wear a floatation belt), then returned to the side until I need it. AMAZING.  It was dubbed the mermaid chair & was surprisingly comfortable. 

As I sat in said mermaid chair with Squooze (SIL) waiting whilst Mr Geek & small people threw themselves down slides, I asked her how the place was in terms of sensory aspects. Of course, I would be looking at it from a mobility aspect but from  neurotypical perspective. She seemed very much at ease which was ever so nice, but looks can be deceiving so I asked the question: “it’s quite echoey, but it’s big enough to turn the voices into a background hum. The only thing that’s breaking though is the occasional shriek – cue child screaming down slide- and people shouting very close. I don’t like people swimming too close to me either.” It was noted that it was surprisingly uncrowded for late July / August and we were all feeling very chilled. It was nice spending time as a group & it gave Mr Geek & Squooze some time to properly spend time together as sibling grownups. He still feels very protective of her despite being the younger sibling & she still remembers the irritating little knobhead who drove her nuts (yeah, he’s still.in there). 

We were all exhausted after swimming and they all caught the land bus back to the chalet to conserve a bit of energy- I say they because I’d attached Leonardo to use as a type of mobility scooter, so rode him all the way back, plus a bit further to check out the nearly park. With the smooth tarmac pathways built for the hundreds of electric golf buggies, Leonardo can pull some serious speed. I’m happier at speeds under 10mph, especially when there are pedestrians around, but there was a sneaky moment of wind in my hair “bicycle Bicycle BICYCLE!!”.

Our 1st proper evening was very reminiscent of the countless other evenings that we’ve spent holidaying with Mr Geek’s parents. Although I wasn’t partaking of the “happy water” (apple schnapps), it was flowing and we laughed away the evening with card games including the staple Uno and theist competitive game of Pass the Pigs imaginable. I may have been a little number in the head after a round of (much needed) painkillers, but the human interaction from evening silly games is like chicken soup for my soul. It creates connections. And although they are my family by marriage rather than birth, I’ve spent 1/3 of my life with them and don’t feel like that outsider looking in. 

This is in stark contrast to how I see (saw) my parents with their respective inlaws. Being here, it occurred to me that all of my memories of visiting my maternal grandparents for a ‘holiday’ included me sharing a room with my mum & her making the standard excuse of “he’s really busy at work”. Even now, excuses are made not to go & support mum when she makes the journey to care for her mum. I can’t imagine not rocking up & helping if Pen & Mr Geek Snr. were declining in health, or at least just supporting mentally.
This doesn’t just apply to my dad. His parents visited once every 2 years from Canada & stayed with various relatives. In total, I met them 8 times in my lifetime. Nevertheless, they were my grandparents and I created a whole rose-tinted idea of them. As I got older, more details were mentioned about the relationship my dad had with his parents growing up & I resolved to have children who genuinely had the kind of grandparents I’d made up in my head. Consequently, my girls have the kind of relationship with their grandparents the Mr Geek had. And just look at how he turned out. My babies have been raised by a village. They’re incredibly lucky.

Note: the insomnia is clearly still.here, hence blogging until 2.30am!! 

This is a personal take on our first few days at Centreparcs- for my official review, please visit my Les Trois Forêts Review Post.

Budget Ibis Hotel, Valenciennes – Accessibility Review

This is an extended version of my TripAdvisor review. I had reviewed this hotel in terms of accessibility with the following in mind:

  • Wheelchair Access: limited
  • Physical Access: single floor / good
  • Disabled Parking: Excellent
  • Sensory: Adjustable lighting / No temperature control / some read noise / linen (plain cotton) / ambient noise – low / reception (strong smell of sandlewood)

Lovely clean room which looked well maintained & had a bath! (Something sorely missed when we’ve travelled before). Fab idea to have one of the kids beds above the double as this saves on room and our youngest was very happy with having her own nightlight. The beds are basic & sturdy (read ‘hard’) which suited me well, but Mr Softie husband wondered if mattress had been optional…

An image of the ground floor family room with a double bed, single bed, & bunk bed width ways over the double bed

Rooms were on the ground floor which meant that you could park right outside the room (lots of disabled bays & plenty of space to get out).

Panoramic image of car parking spaces & entry doors with disabled parking & ramp to doors

The room had a patio door at the back leading to a little patio area & grass, which despite being very close to the motorway, was peaceful and very welcome after hours in a car! The area itself is fenced off which allowed the kids to stretch their legs (with other children doing similar) & us a safe place to store our bikes just outside the door & give us a little more room.

WiFi is included in the price of the room which was very welcome and was a decent speed for general browsing.

Lady at reception was very helpful and took pity on us after our dreadful attempt at chatting in French (I forget words in English, so perhaps a road trip where I attempted to speak French, German, & English was maybe aiming a tad high!). There’s an accessible toilet in reception.

Breakfast was a buffet with coffee, croissant, yoghurt etc. Everything was fresh & very nice. My only issue was using the brilliantly installed wheelchair lift to get to the breakfast bar… which was locked & no one had a key! This was easily solved by sending the family up to the breakfast bar & sitting in the lower table area. This is a potential issue had I been travelling alone.

Wheelchair lift in reception

Getting to reception in a wheelchair is difficult (there is a 2″ step to get onto the ramp which was too steep for me to propel myself manual chair up myself ). Once in reception, there is a lowered desk, although the card machine doesn’t reach it.
Image of tamp to reception with step up get to ramp

There is no resturant on site & if you’re travelling on a Sunday there is very little available. An “emergency” McDonald’s is located 4km up the motorway (about 10 minutes). Usually, there is a resturant available at the neighbouring Novatel.

We booked a stopover here for a family room clearly stating that one person was a wheelchair user at the time of booking. On arrival, we were told that room layouts were either wheelchair accessible for 2 people, or family rooms. As I need physical help from my husband during the night, we couldn’t make use of the suggestion to book 2 separate rooms, so stuck with the family room.

There is a clearly signed wheelchair access route to the rooms from the car park, however this also contains a 1″ lip in order to get up to the walkway. The doors were wide enough to push my manual wheelchair through if my husband helped lift me over the raised frame, and aside from not being able to close the bathroom door & there being no grab handles (remember that this was not billed as the accessible room), the hard floors and clean layout meant that I could scoot about in my chair with relative ease. For those with anything bigger than an active user chair, this wouldn’t be an option.

Overall, it was perfectly pleasant as a stopover with our only grumble being the mildly terrifying ramps & the assumption that a family wouldn’t require an accessible room.

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.

Cooking XMas Goose

The first weekend after Christmas was set aside for internet geekery. I’ve been sitting on this post for a while as I wasn’t sure of the start… Or middle… Or end.

When we teach internet safety, one of the first things we drill home is that people online may not be who they say they are and meeting up is a bad idea. So what do we do? We book a massive cottage for a long weekend with 17+ people who have pretty much only ever met online (aside from the couples… Those of us married to each other know each other quite well)… Oh and add to that offering a lift to the guy who lives up the road from us.

As a bit of background for those who don’t know, Mr Geek and I “play” World of Warcraft (when I say play, we sporadically jump on, have fun in guild chat but rarely actually progress through any actual game play). We’ve been playing more on than off since just before the Burning Crusades expansion which means we’re retro. That’s retro, not old. We’re also part of a guild called the Fighting Mongooses in which we’ve made some really close friends and spend an eyewateringly large amount of time with. The last 6 months or so, we’ve not played much since I’m still trying to find a way around being caused pain by using a mouse (Suggestions on a postcard please), and yet when I do pop in for quizards I’m still treated like I never left. These are good people who have seen me through some very unpleasant bed bound days. So what else would we call our Christmas gathering but XMas Goose!

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After driving 3.5 hours north (like really north where the signs point to Northern towns instead of just saying “The North”), we arrived at our cottage. The cottage was a strange conversion of many little cottages on the ground floor and an enormous first floor. The plan was to wrangle me upstairs then spend the next three days without leaving the house so I could scoot about happily in my chair. We arrived having not been full of conversation as I was exhausted from work and more than a bit nervous. The long journey had been counteracted by installing me on the back seat surrounded by my full body cushion (thanks Jo), covered in blankets, and wedged in by bags.

Can you find my legs?

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I was left in the car whilst discussions took place about how to wrangle me upstairs. After a while in a dark car, I was met by progressively larger and hairier men who all greeted me by name.
Sidenote: I’m reasonably sure that had this also included a winged set of Cumberbatch angels, this would be easily mistaken for having died and gone upwards.
I digress. Hello once more hairy menfolk… Oooh with vodka homebrew. Yep. I’m not intimidated, or in fear of my life. My WTF-are-you-doing metre has never been good. Shell was there – it’s all good.

Said hairy men assist with crutches and me onto them then laugh hysterically as I bum shuffle like a toddler up a set of unnecessarily steep wooden stairs until I’m sat on my arse on the floor greeting everyone else. Not wholly dignified, but hey, start as you mean to go on!

After some initial vodka based icebreaking (thank you L), and for the rest of you I know, but it was only a small glass, we discovered that midget prostitutes are a thing in Europe, fruit vodka is yummy, T watches some very dodgy manga, and it is scientifically feasible to build a wall out of cultivated living human liver (but you’d need a gate). It turns out that when you stick a load of socially awkward nerds in one cottage and add alcohol, amazing things happen. They talk for a start. This was an unhealthy concentration of programmers & IT professionals – usually there are normal people to balance out the weirdness, but not this time. Dan The Accountant was no match and so just came over to the dark side.

Card games commenced. Starting with Exploding Kittens, and quickly descending into Cards Against Humanity.

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Shell found the safest place was away from the smut and instructing from afar, much like her pixel driven clothwearer. I know she’ll hate me for including the photo, but she looks awesome in the Jedi slanket & this photo is nice. She looks happy. I like this. Other Mr Geek looks confused.
I never did thank him for helping me upstairs. Thank you other Mr Geek 🙂

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This is pretty much how the whole weekend went. Card games included, but not limited to : Exploding Kittens, Cards Against Humanity, Flux, Uno Accountant Edition, Munchkin….

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It was also decreed that all must wear a onsie at some point over the weekend. J won hands down with his seal. I mean, how could he not win?!?

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Eventually, the nerds needed more distraction than just paper based games and Mr Geek plugged in his PC (oh yes, he’d driven all this way with his gaming rig which someone had to sit in the back with). He’d also brought the Steam box so not only did we have instant PC games, but the ability to connect 8 XBox controllers. The second the OS flickered into life, it was like watching nerdy moths. Nonetheless, whilst most got stuck into a game of Gangbeasts, it gave some of us chance to catch up in person and fully connect people’s online names to their real ones.

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Eventually, everyone gathered around the TV for the final few rounds of Gangbeasts before moving onto Mount Your Friends. If you haven’t discovered this true joy of a game, stop reading this and go buy it. It’s utterly childish, but so much fun.

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The word of the weekend has to be “motherfucker”, not only because we were all child free for a whole weekend, but because of the overheard conversation where it was asked if that was actually a swearword. We nearly fell off our chairs laughing.

Over the course of nearly 3 days, we consumed a diet of nearly pure junk food in which my gluten free diet went out of the window, or I’m sad to say into my intestines (I also discovered chicken tikka masala pixza – try getting that in the home counties). There were cups of coffee in there somewhere and Mr Geek consumed more beer than I’ve seen him drink in a long time.

On which note… Mr Geek relaxed. With me installed and Shell quietly looking out for me (yes, I noticed and thank you xx), he stopped fretting and chilled. He regained the colour in his face, enjoyed being with other people, and we felt like a reasonably normal couple, aside from him relocating my shoulder for me after a particularly enthusiastic round of Uno. I won. Totally worth dislocating my shoulder for. As he put it back in, I winced as it tore a ligament slightly (the loud snap probably didn’t help) and I was compared to John Wayne. Ha! The only reason I don’t yelp that much is I know how bad it will be. You scream when the pain is an unknown quantity. It took a week for it to stop swelling – Uno is a dangerous sport.

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When it was time to leave on Sunday, we eeked it out for as long as possible with me having that same twisty gut, don’t want to say goodbye moment that we had at EGX. It didn’t matter that we’d see them all online within a week once we’d all recovered from so much social contact, the magic spell over our tiny nerdy bubble was going to be broken and we’d have to stop laughing. Even packing up was funny, aside from A falling down those damned stairs – I had said I wouldn’t catch him, but every single one of us shreiked like a girl and had visions of him rebreaking his poor shoulder. Aside from S, who true to form called him a penis.

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I dislike that we live so far away from so many of them (although we made a promise to meet up more regularly with those closer… And for reference, meant it :p ). There was a point very very late one evening where we all got a bit of an insight into each other’s psyche and found out that we’re really not that different. Somehow, through all those millions of players, we found a group of kindred spirits there, none of whom were psychotic axe murderers, and all of whom gave me a whole weekend of feeling like a normal person instead of that person who’s ill.

Driving home, I hid under a blanket and watched downloaded episodes of silent witness whilst trying not to barf (gluten combined with slow transit & car sickness is grim). I will admid to a teeny bit of under blanket sniffling.

It’s not goodbye, its au revoir. And if you need me, just put your fingers on the keyboard and just /whistle

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<3<3<3<3