Pleasure & Pain

This is where you see the NSFW disclosure and start to read on sneakily, except this is USFW (utterly safe for work). 

As you do when chronic pain becomes just part of everyday life, I started to Google the medical trials for some of the treatments suggested to deal with my pain levels. One of my go to solutions when it gets too much is my TENS machine. Frankly there are times when I just don’t have enough pads & a full body suit would be a better solution, but as breakthrough methods go, it’s short term effectiveness wins my vote. But why?

There is little evidence to support the use of TENS for chronic pain relief, and yet every physio & pain management professional I have seen starts with this as a non-medical option. I’m generally a skeptic when it comes to things that haven’t been clinically proven to work, but  desperate times…

This is the machine I bought. Thanks to a PIP payment, I was able to upgrade my old 1 setting machine to a duel channel machine with multiple settings & the ability to set my own.This is in no way a recommendation of the device itself, just an image of my own machine for context.

Breakthrough Pain

This can hit me & hit me hard. When my SI slips, or a rib moves, or another spinal disc bulges for no good reason, I get Mr Geek to slap the pads on & I electrocute myself for an hour or so. In these cases I use a TENS setting which in theory uses “gate theory” to block put the pain signals – the idea here is that the electrical stimulation of the nerves blocks the pain signals to the brain. Tbh, it’s similar to massage for me. When any of these areas pop the surrounding muscles often go into spasm and cause more pain, the massaging effect of the tens machine gives the muscles no choice but to contract rhythmically creating a massage sensation & also preventing them from doing their own thing. The pain relief only lasts as long as the machine is on & the intensity feels less over time.

Myofascial Pain (muscle knots)

EDS is bloody evil. Not content with messing up my joints, because my muscles are taking over the job of my tendons & ligaments and because they are constantly overworked holding my skeleton together (or not), my larger muscles are riddled with knots. These are tiny (anything from a grain of rice to a marble) areas of muscle that ate stuck in a contracted state. Strangely, these often bother me more than a joint dislocation as they irritate & cause headaches, or twingy irritating burning pain.  No one really understands why they are there, but they do cause extra pain which refers to the areas around them (eg. A knot in my shoulder may cause pain down my arm). 

There are a number of ideas of how to get rid of these and growing evidence to prove that each method has its merits. The 1st is massage, but rather than Swedish gentle massage, this is pushing on the knot with some considerable force until it releases. Poor Mr Geek has spent hours upon hours attacking the major lumps in my trapezium  (shoulder blades) which bear the brunt of force holding my shoulders together and my head up. A good massage therapist can work out knots, but within 24 hours mine can return so the cost would be prohibitive!

Secondly is getting the muscle stimulated. Activating the muscles my lifting weights is a good example, but a terrible idea for someone with unstable joints! So along comes the TENS machine with its EMS setting (electrical muscle stimulation). With the pads placed correctly, this makes the muscle twitch in a rather off putting manner, but through contraction & release, somehow confuses some of the knots into relaxing and joining the normal working muscle. If you can get through the weird twitching, this is a simple option that also tones the muscle.

The final solution I’ve yet to try, but am fast edging towards is myofascial release therapy which is rather uncharted territory. The basic premise is to insert a needle into the nodule (knot). Trials have shown that this process somehow forces the muscle area to stop contracting. This is done as either a standard acupuncture needle to just release, a set of acupuncture needles which are then attached to an electric current which adds the TENS element, or more clinically, a standard needle which administers a small dose of botox into the muscle which prevents the muscle from contracting for enough time to stop the knot reforming.

It may sound drastic, but the third option appeals to me from a logical standpoint. If I’m desperate enough to allow someone to stick needles into me (and I am), I don’t want the bloody things coming back within hours!

Have you tried TENS for pain relief? Or even had needles stuck into you in desperation? Did it help?

Almost Cut My Hair… Then I Did

Ever since I decided to write this blog I’ve been humming the Crosby, Steel, Nash, & Young song that my Dad used to play me as a kid… 


Actually, I did this a few weeks ago before we went away on holiday, but I wanted some time to get used to it before I blogged. 
As some of you know, I’ve spent a great deal of this year wearing headscarves (officially a tichel) to make light of my hair coming out in clumps at the start of the year. I kept it long despite the daily winding up of balls of hair & needing Mr Geek to wash it for me because 1. I couldn’t get my arms up to shampoo & 2. The weight of my wet hair needed me to support my head with my hands. I did this because, well, I gave long red hair. That’s who I am. Until I snapped.

My GP has now put me on an extraordinarily high dose of vitamin D, which I just don’t process and my hair has recovered in as much as my scalp is covered once more. It’s also had an impact on my energy levels & I’ve stopped falling asleep mid conversation for the most part (now, it really is because you bore me).

But I wanted to look “better”. No matter how funky I made my headscarves, being in a wheelchair, they just added to the “sick” look. So I marched my family into the hairdressers & whilst the kids were having their Pre-holiday trim, I asked them to lip off 1ft of hair from my head. I had a vague style in mind & handed her these two photos announcing that I wished to have a midlife crisis & hang about playing the ukulele.

She looked at me & asked if I was completely sure I wanted to cut such long hair & if my husband minded me having so much hair cut off. I opted for even shorter. In my mind, the end result would be the catalyst of me dropping the uptight image & Boho my way through the summer with potential ukulele based nudity.

The reality was close to my mental image even if it took a while to work out how to style it (I have natural ringlets- who knew!?)

From a practical point of view washing, brushing & styling is all infinitely easier with shorter hair and the front is long enough to still be clipped up out of my face.

From a deep down emotional point of view, this is another thing that EDS took away. I can’t manage with long hair anymore & gave in. I loved my hair & to a point also loved my scarves which I will continue to wear when I feel the need to cover  (I didn’t when we went out in Germany & surrounded by women in hijab, I rather wished I had covered some days as a safety blanket). I need to set about working on the new ‘short hair’ identity. It’s still red, but not as red (or pink, or green) as I’d like it to be, but give me time…
When I get back to work, I’ve set myself the mission to tame it into looking more like this:

For those of you who haven’t come across Fleabag, search it out on Amazon (or BBC3 if you’re in the UK). Her hair is amazing. Oh, and the show is tremendous too.

So there you have it – good hair news in that it’s healthy & returning thanks to hearty vit D doses, and other hair news in that my midlife / chronic illness crisis has left me shedding any high flying career ideas that may have once been top of my Maslow triangle,  instead, with holes appearing at the bottom of the hierarchy, I’m reverting back to by teens with a life goal of obtaining that dishevelled & slightly unwell, but still oddly sexy look a la Courteney Love, and a Palmer etc. and playing the ukulele naked somewhere. Now after 2 cesareans, emergency surgeries, & a penchant for Milka, no-one needs to see that!

Just for reference, I was prattling on about where I sit on Maslow’s Hierarchy of Needs – like the foundations of how to be a happy & fulfilled person – without the lower tiers, the higher tiers fail. Based upon this, where are we do you think?

Reduced mobility & Boho clothes are really very suited. There’s another blog right there. But for now, what was your biggest thing you “gave into” because of disability?

Blogger Recognition Award

I received a surprise post with one of these from Ren of Broken Down Body (how lovely!! And thank you so much!). It’s lovely when other bloggers make a point of telling you they like your writing (& a tiny bit affirming as so many of us blog in place of verbalising!).

I love reading her blog as it’s a different view of Ehlers Danlos Syndrome which we share and she handles things with far more grace than I do!

Anyway, the idea of this is to write a blog in which you follow

The Rules

1. Thank the blogger who nominated you.

2. Write a post and display the award.

3. Share in your post a brief history of how your blog started.

4. Give advice to new bloggers.

5. Nominate other bloggers you feel deserve the award.

6. Let each blogger know that you have nominated them.

So, without further adieu here it is:

1. Done. (See above)

2. I rather think the is it… (see image above)

3. How my blog started:

I’ll admit, I had to scroll back a while to find out where all this started in early 2013, but apparently I arrived on this blog with a bang, or rather a mooncup. I’d written a very personal blog before, but decided on the grounds of mental health I would remove my previous blog and start this one. Initially it was a bunch of random topics about being an insufferable geek, mother, and teacher. Looking back, it was clear where it would end up with my physical health & mobility rapidly declining throughout the lifetime of my blog. In its current evolution  (this is not it’s final form), I blog about teaching, Ehlers Danlos Syndrome, disability, and accessibility.

4. So …dear new blogger, 

Expect some weird comments. You can’t control who reads your blog so be careful posting too many personal details. Don’t use people’s real names (but people will get to know who ‘they’ are).

Most importantly, don’t ever read the search terms & if you get a troll, screen capture them and blog a response. You’ll find 95% of the blogger community will get right behind you.

5 & 6. Nominating other people is hard because there are so many amazing blogs out there. Instead I’ve nominated those people who have made a real impact on my life.

Mom Goes On – I feel like we’ve been blogging alongside each other forever & she always leaves such lovely comments for me. Thank you xx 

JBOT | Adaptive Disability Lifestylewas the blog I turned to when Ehlers Danlos really started to kick my arse. Her written advice kept me sane in the wee hours (and she’s lovely on Twitter too). I genuinely wish she was my OT.

Sarah in Wonderland is another person having fun with EDS… but in style. I actually met her on Twitter & she is always there for my 2am outbursts! She’s also convinced me to keep trying to look human despite major pain.

Vicky at Around & Upside down is another Twitter friend  (are you getting a pattern here?) who has seen me through a few difficult nights. Eventually we’ll write that chronic illness ahem ‘book’ together!

Sarah from Bloo n Stuff because she’s outspoken & insufferabley chirpy! And has very good hair.

Also, an honourable mention for Polishing Dookie because her shit is funny.
So, there you have it. One award & paying the love forward to these wonderful people. Mwah xxx

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.

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.

The Art of More – pacing for control freaks

“Urgh, my back is killing me” mutters a colleague as they stomp across our office rubbing her lower back. The guy I share desk space with visibly cringes and looks at me. Bless him – he’s in his own world of back pain but barely mentions it. He sees quite often first hand me returning from class white faced & pursed lipped as I struggle to maintain the air of someone who’s totally coping with life despite landing in a wheelchair and eating more painkillers than food at lunch.

Today has been a brilliant day. I’ve been a proper mum with the kids, but am suffering for other now by being awake & in more pain than my drugs can attend to. One of my goals this summer is to implement pacing. But do it properly, not just acknowledge I have limited spoons, then throw the whole cutlery drawer at each day. Clear project management is required here.

So what is pacing and why do I need it?

So, imagine you have a baseline which is perhaps laying in bed resting, you can perform an activity within your personal limits then will need some inactive time to follow it. There will be a period of overload because either you’ve tried to do something beyond your energy / physical capabilities or you’ve carried on with a standard activity for too long without a rest. So just like in physics, every action has an equal reaction.

I need to work out how my day at work looks in chart form to see how my pacing is going.

On an average day I’m bouncing above that overload line a lot & also not building in any proper recovery time. I’m also packing in more than an able bodied person could realistically contend with regularly. I’m not giving any leeway to accommodate being in pain. So, I need to attack this the only way I know how, and that’s with a list.  That list will contain all the tasks for tomorrow and then I’m going to prioritise them and build in rest breaks (I’m doing this now as I have control over my day which I don’t at work. That’s a different conversation & one I am going to have to have with OH sooner than I’d like). So tomorrow , or technically today as it’s 2am:

  • Get dressed
  • Get downstairs
  • Teeth / hair
  • Hair cut
  • Dye hair 
  • Wheelchair racing
  • Pre-holiday visit to inlaws
  • Buy physio tape, calpol, blister plasters
  • Lunch
  • Pack for holibobs 
  • Print out letters / tickets for holiday folder
  • Tidy room
  • Eat dinner
  • Get up to bed

Oh holy hell. That’s not a restful day before heading out! Almost everything on that list needs to be ddone due to imminent departure on our road trip on Sunday morning. Wheelchair racing is the only nice to have on there & TBH, it’s my last session for 2 weeks and it does me so much good (physically & mentally).

Ok, so let’s add priority:

  1. M- must
  2. NTH – nice to have
  3. CD – could delegate
  4. OTL – off the list
  • Get dressed – M
  • Get downstairs – M
  • Teeth / hair – M
  • Hair cut – NTH
  • Dye hair – NTH
  • Wheelchair racing – M
  • Pre-holiday visit to inlaws – M
  • Buy physio tape, calpol, blister plasters – CD
  • Lunch – M
  • Pack for holibobs – CD
  • Print out letters / tickets for holiday folder – CD
  • Tidy room – NTH
  • Eat dinner – M
  • Get up to bed – Massive

See how cleaning up hit the bottom of the list there? My mum would flip if she saw that! 

CDC sadly falls on the shoulders of Mr Geek & the kids, but I feel a little less guilty having braced myself and bulldozed my way through a whole week of him commuting to London (or from our perspective, not being there to get me out of the house & not getting back until after 7pm). It’s his first week at New Job which he is absolutely loving, but fuck me that was blindingly hard. I didn’t want to worry him, so slapped my happy work face on. I’m paying for it now though  with bones cracking as I breathe & thudding palpitations waking me each time I doze off.

My plan is to use this priority list tomorrow & see how it goes. If anything gets added to the list, I’ll note it down to see how I’m undermining my own paving without realising. The “oh I’ll just…” moments. 

Wish me luck! 

How would’ve you organised my list? Let me know how you prioritise your to do list. Is there an app for this?

Sunday Night Optimism 

You know those awful ten things posts? Yeah, I’m going to do one of those. 

I was being a bit of a grumpybum earlier, so decided to a list of reasons to be happy.

*accessibility warning – there are some fast rolling image gifs at the end of this post*

1. This guy. We’ve been together nearly 13 years & married for 11 of those this year. Aside from snoring like a dying gruffalo, he’s pretty amazing.

2. Mrs Gypsytree visited this summer. We didn’t get to see each other as much as we’d like as their summer started a month before ours does, but we got a lovely evening in where we celebrated them finally owning a real proper house in Norn Iron. I still miss her being a few minutes up the road, but they’re ever so happy & that’s good. 

3. I’m superhuman. Wheelchair racing has transformed being in a chair from a loss of mobility to a doorway to new friends, supportive but very real competition, and a sport that I can participate in for the first time since forever without crippling pain. Don’t get me wrong, it hurts, in fact on the first corner of this particular race my hip popped so badly that it came all the way out & I pushed 800m with a fully dislocated hip & a subluxed shoulder. At the end I was gasping for breath & Mr Geek had to haul me out of the chair and push everything back in & feed me morphine.

BUT, I competed in my first race with my friends, showed people we’re enabled, & we all came away with fist bumps and massive smiles.

This is the face of someone who is going to FINISH this race.

4. We’re getting somewhere with the joined up thinking. I’m now officially seeing the neurology team at UCLH and not only are they looking into the POTS symptoms, they’re being joined up and looking at the other weird nerve issues with the lack of feeling & strange reflexes in my feet, and looking at ways to manage the EDS. It means more time & lengthier stays here, but it’s progress and very positive. They even encouraged my chair racing as a positive way to keep the autonomic car crash that is my body as functional as possible 😆

5. Half way there! The scary seven are still enjoying lashings of ginger beer together. Despite now living 600 miles apart, the minute they get together they’re back to being the same tribe that they’ve always been. This year we couldn’t physically make it up to “our tree” so settled for a bench instead. They didn’t seem to mind, although this once again confirms that it is impossible to get a photo of all of them making a near sensible face!

6. My life doesn’t have to be restricted to reality. My hands may not grip pens or paint brushes anymore, but on a good day I can hold a controller and paint virtually. The VIVE has allowed me to return to using a virtual paintbrush & now sit quietly in a vast dark room and paint in 3D. The best bit is I can choose from any size brush and whilst the virtual brush size changes, the controller remains the size of a crutch grip & is as light as a tv remote control. I’ve learnt how high I can lift my arms now without dislocating (Although I still get engrossed and utterly forget, then re-enact the scene from Horton hears a who where the mayor runs from the dentist). Weirdly, I can self-propel in VR & it feels like normal.

7. My friends are just as daft as me. When it comes to showing cancer where it can shove itself, we certainly did. The volume of physio tape it took to hold three women with connective tissue disorders together must’ve made KT rub it’s hands together, but nothing beats seeing your proper mega serious marathon runner friend skipping beside you in a tutu. To top it off, Lizzie on the far right, won the whole flipping race as the 1st finisher in just over 17 minutes. There’s a reason she uses the hashtag #RoadToRio in her posts. And when (not if) she brings home a medal one of these days, I’ll still be chasing her like a slightly defective whippet after a rabbit!

This was one of my happiest days from 2016.

8. Yeah, ok, it had to be in there somewhere. I’m not out there kicking arse every day. Quite a lot of days I’m in here wondering how I’m going to make it those 5 meters to the loo without ending up on the floor in a heap. So to keep me amused, I have Pokèmon Go! There are a few teething issues with servers and the fact that the developers rather forgot that people with physical disabilities may have rather an issue with walking that 10k needed to hatch an egg, or get out there & explore for PokeStops… I’m sticking with it for now in case they add some more accessible features. Until then, here’s the bastard that chewed up 11 of my pokeballs & still got away!

9. Friends. But more importantly, friends who understand why I cancel plans at short notice, double book myself because my brain is shot to pieces, who still invite me to things even though I’ve declined the last four hundred times because I’m too tired. And who get that me being too tired means I’m probably actually in too much pain to be near people. Some of them are fellow Spoonies, others are just empathic enough to see through the “I’m okay!”.

They’re good people. 

10. And very much not least are Beanpole & TinyPants. They are wise beyond their years and not given nearly enough credit for the caring that they do. I have the best time with these tiny little ladies even if I do have to pretend I’m actually a grown up who’s in charge on occasions. There aren’t many 10 year olds that just stop acting up or having fun because they can see that mummy is in more pain than usual. They carry stuff, they give up trips out to snuggle in bed with the TV, they get on with their homework so I can nap. I may regret being so impressed with them once they turn into unresponsive grunting teenagers!

For now, I’m pretty thankful & optimistic for a good week. I hope yours goes well too. Xxx

#WhyImNotSleeping Chronic Memes

There was a Tumblr some time ago that touched a chord with us as parents. It was called Why My Child Is Crying. It saw the funny side of situations that make so many parents want to bathe in wine until it goes away. Here’s a few choice examples :

There was something about those parents sharing the photos of the realities of parenting a small human that made us feel a bit better about how we stumble blindly through parenthood hoping we don’t mess them up too badly. So that got me thinking. Surely there should be something similar for those of us with chronic illness who have the option of drowning or seeing the ridiculous & amusing in our situations. The thing that gets to me the most is my sleep pattern (or lack thereof), so here is is, #WhyImNotSleeping is now a thing. Tweet me your photos & I’ll collate them on here.

For now, here’s my own personal collection 😴

Perhaps there’s a noise in the room…

Or because of our nightly 1am visitor

Or maybe it’s because my friends are also nocturnal…


Finding humour in my strange little quiet & low lit world certainly makes it a nicer place to be. So, Why aren’t you sleeping?