What Keeps Me Going

I actually wrote this a week ago, but have been too knackered to proof-read & post it. So yeah, pretend you’re reading this a week ago… Or not. Same pills today.

“That’s a lot of pills!” exclaim my friends when I see them in the evening and they see me take my evening painkillers. This is true, but I’m held together by a lot more.

There’s a trend of people with chronic illness posting photis of their pills – although it may look like “sicker than thou” behaviour, it’s actually a response to people who see us functioning and berate others who don’t have the capacity and/or backup to do the same. This isn’t a positive attitude, or other such inspiration porn nonsense getting us through, it’s a shit load of pills, coping strategies, and people who carry us (sometimes literally). So let’s take a look at today as an example…

This morning started at 6am with a cup of coffee, overpowering nausea, and vitamins! Heart rate 56, blood pressure 86/62.

A hand with a variety of vitamin tablets

Due to the joys of Ehlers Danlos, I simply don’t digest or hold onto vitamins so need to take high doses to gain any effect. Other times, my stomach holds onto drugs for a few hours then digests them all of a sudden with the next dose. Because there’s nothing scarier than your stomach having a parasitic grudge against you. This morning contains:

  • Multivitamin with extra iron
  • Cod Liver Oil with glucosamine, both of which are good for joints, reduce inflamation, and tissue repair
  • High dose vitamin E to bolster immunity and improve circulation (useful for keeping POTS in check)
  • Evening Primrose Oil – because of lady things

Couple this lot with a naproxen to dull the aching and I was ready for breakfast. As usual, it’s a cinnamon pastry swirl thing which is basically the only thing I can eat in the morning without wanting to vomit.

Mr Geek gets me washed & dressed, then I can paint my face. Being over-tired at the weekend sparked off my rosacea, so beneath the foundation is a layer of Rozex – this stuff is miricle cream for rosacea in general, but it attacks the evil deep cysts that appear when nothing else does. It’s a mild antibiotic that restricts blood flow around the skin, sort of like acne cream but for inappropriate immune responses.

A hand hoding a used tube of Rozex cream

Cup of coffee #2 comes into work with me & raises my blood pressure higher than the previous undead level. HR 65, BP 102/73.

Work is a welcome distraction and despite feeling a bit overwhelmed right now with marking coming out of my ears, getting into some meaty project work took my mind off wanting to hurl. At the same time, I also kept sipping frim my bottle of diet coke which is another good way to settle stomachs…. And yes, I know diet Coke is the root of all evil, but I’m not being sick, so meh.

Lunchtime rolled around & I looked at my snack pasta & made a face, so opted for the bottle of slimfast in my bag. I’ve tried the medical ones & build up shakes, but I can never stomach them. Slimfast works for me, so I’ve stuck with it. Add in some Naproxen as a pain relief desert because my neck is sore & my back is in icy pain. HR 96, BP 91/65 (eating carbs doesn’t suit me but how else do I get through the day?!)

Final lesson of the day started with a mild headache from trying to (and failing) listen in big conference centre meetings*. As the lesson went on, the lovely flashy lights started and the right side of my face thumped. Metaphorically limping back to my office, I could’ve cried when my lovely colleague signed to me to ask if I was ok. The pain in my head was pulling my hearing levels down further & the brain power needed to lipread was too much. I was really lucky to catch the migraine early and attacked it with a Sumatriptan and Dihydrocodeine as what had been one side of my face was now in my spine (see my migraine post for why all the big drugs). I could literally feel the fog lifting. Bliss.

Unfortunately, post headache I’m tired & foggy and by the time I get home at 5pm I can’t function verbally or focus enough to lipread. The girls & I head up to bed to watch Bob’s Burgers & rest.

After I’ve semi-napped, Mr Geek brings up tea of grilled salmon & vegetable rice. It’s bland enough to et, but tastes nice. For the 4th time this week, we eat dinner in bed as I’m too exhausted to sit at the dinner table.

Evening drugs of:

  • More Dihydrocodeine – opiate painkillers that control my baseline joint pain well
  • Gabapentine – this is technically an anti-epilepsy drug, but it works well on the nerve damage pain.
  • Vitamin D – massive doses of this reduce joint pain, increase energy (ha), improve bone density, and make me a little ray of sunshine
  • A few others to deal with the ahem.. side effects of the opiates

Around 11.30pm my neck pops so hard that it triggers my spine being an arsehole again so Mr Geek measures out a safe dose of liquid morphine to at least help me sleep.

So there you have it. Before you chastise someone for not working through ill health because you see people with chronic illness “coping”, remember what goes into that image you saw. We are excellent actors, but also have a supporting cast of narcotics, and people who feed us, dress us, and take on all the jobs around the house that we can’t do because we’re busy looking like we’ve totally got this.

Even so, I’ve totally got this ok?

…. As a final word, I am a firm believer in science and I am perfectly aware that my headaches are triggered by orthopedic issues. But that doesn’t stop people giving some interesting advice /cures! Here are some of my favourites:

1. Head-TENS – Now I’m all for TENS as part of my toolkit, but I’m not up for electrocuting my heart or my brain.

2. Sex – with a migraine? Ha. Hahaha. Hahahahaha! No.

3. Um.. Pulling the blood from your head! You know, I’m not even sure what’s going on here even with the explanation. The internet needs a child lock.

*please don’t stand in front of windows when presenting. If people are lipreading, it’s nigh on impossible.

Advertisements

What is your major malfunction?

This is a ‘remember this’ post. Stream of consciousness shortly after ‘a moment’ is useful to print out and use for pain management. Apologies if it’s a bit garbled.

There’s this wonderful sweet spot after a massive pain flare where everything becomes calm & quiet. Even if it invariably returns, for now it’s like the eye of the storm and I can lay here totally still aside from my hand tapping my phone and feel the multitude of painkillers dulling each of my nerves.

Describing this might sound like I want to be high (quite the opposite! The side effects suck, but these drugs keep me functional as a human), the pleasure gained from this quiet moment is in the polarisation from less than an hour ago when I reached a crescendo which left me literally rocking in pain. No-one seems to know for certain what causes these God-awful headaches aside from craniocervical instability (posh word for wobbly neck & skull) caused as ever by Ehlers Danlos Syndrome, but after sitting up for too long, or being bumped, the flashing lights signal the party is about to start.

I’ve tried to explain this before, but without success so just bear with me on this one…

Once the flashy lights start, one eye feels like it’s bulging & a steady thud starts in my cheek. Over the past few weeks, I’ve been taking sumatriptan at this point to stop it going further – for 6/8 it’s worked. I could kiss the GP that suggested this literal wonder drug. It didn’t work tonight, but the trigger was different – tonight I’d hurt my neck washing my hair (the water weighed it down & something popped), then I knocked out my jaw at dinner.

When it progresses, which it did today, that squishy bit at the base of my skull that was sore before starts to sting, and gradually the pinching in my neck moves down my spine until my pelvis aches. The pinching feels wet – there’s no other way to describe it. Like cold water travelling through my spine to where things hurt and either sending electric, tingling above my waist, or thuddy dull pains into my legs.

With my head pounding & my spine burning, my usual level of hearing dropped. This scares me because having lost my hearing reasonably rapidly I’m always concerned about how much will come back. Usually, I’m down by the dog in the Moderate/ severe range in the graph below (I hear lower sounds better & speech is only audible if there’s no background noise), but when it dips everything becomes like listening to Charlie Brown’s teacher. It’s not that I wouldn’t cope, but I’m still very much functioning in the hearing world.

At this point I panicked. I know it’s the worst thing to do when you’re in pain and it just makes things worse, but reaching my version of an 8 / 10 on the pain scale causes me to hit the ‘make it stop’ button. There is no painkiller on the planet as successful as Mr Geek kneading my shoulders like dough when I’m backing away from my own body – why? Because in order for the actual painkillers to take effect I have to calm the fuck down.

I’m not actually rating my pain for fun here. Although monumentally subjective, pain scales are a useful way to stop, body check, and assess just how bad this is – it’s as objective as pain is going to get. The scale also provides facial images for Mr Geek to get visual cues of where we are. In this case, we’re well into nothing but the pain.

Many people with EDS have pain tolerances that would make a Spartan blush. I’ve been mildly annoyed by a broken bone, asked for paracetamol following an organ rupture, and yet had a full on sobbing fit because I had a cold. Like I said, messed up.

We treat my pain according to a pain management plan – imagine if you will a birth plan that we use daily (eg. him pointing to the plan & reminding me that heat and tea and soothing music will make it easier, and me yelling at him that if he ever wants to have the ability to get laid again he will give me drugs). This means that we work our way up from paracetamol, to codeine, to NSAIDS, to morphine, to hospital. Because of the brainfog, he’s in charge of timings & doses – this is a sensible step back on my part. Yes, it infantalises me, but on the flipside he is spreadsheet levels of anal about dosage meaning I camnot accidentally overdose.

This evening, after my spine was pinching, my arms were tingling with pins & needles, my hearing dropped out, & I was nauseous (but not sick). Despite feeling nauseous I was also really hungry. Mr Geek gave me everything up to morphine and sat behind me rubbing my neck & shoulders for an hour. The rubbing is similar to TENS – it’s distracting and the skin on skin chills me out.

It had reduced to tolerable levels & I laid quietly for a bit with my phone in ‘night mode’ & my heated blanket on but I could feel the pinching riding up again so we opted for morphine at the lower dose (this allows me to top up if needed, and keep my general dosage low). Laying in the dark with my hearing out is like sensory deprivation and having a distraction is useful.

A second dose of morphine was enough to create this lull and the potential for some rest and enough clarity to describe the type of pain properly instead of a mumbled “er, sort of stabby” when with my doctor. It’s very difficult with hindsight to describe the stages as it all rolls into one ‘bad headache’, so whilst this may not have been the most exciting read it will be useful for me & my doctor at the next review.

Post pain, I’m left with an ache along my back, a pounding headache, and absolutely knackered – this post was written in between sudden naps (and deleting the random characters from nodding off with my fingers touching the keyboard!)

If you got to the end, erm, hi?

Why I Let My Daughter Dye Her Hair Pink (and blue and purple)

I’m riding the “bad parent” wave each time we go out this summer. TinyPants starts high school in September and at age 11 has asked for a number of things that I’ve agreed to despite parental tutting. Here’s why:

She’s always had a strong sense of identity and year 6 has contained some big knocks for her. Instead of the last year of primary school being a fanfare of goodbyes, she counted down the days until she could be rid of bitchy cliques & a head teacher that she openly hated (strong words, but she had big boots to fill & did little to endear herself), and then there were SATS.

Since September, everything was building up to these bloody exams. Art, music, creative writing, science – all the things that made TinyPants love school went by the wayside. Maths drills, spellings, & exam papers were the daily grind – after which there were hours of tearful homework.

“Do your best & we’ll be as proud as always” we kept telling her. In the end, she sat in pain for 4 solid days doing her best (she was allowed to get up frequently, but allowed no extra time. Fearful that she wouldn’t finish, she didn’t take breaks. By day 4, she had a roll of physio tape strapped to her). Previous end of year reports have been a joy to read with comments given across the curriculum; this year one page was given with a table highlighted in red for each of the maths & english exams – “did not achieve”. The pass mark is 100, in most she scored 98 & in one 94. No “how I enjoyed my year” comment, but a “how could I have improved in my exams”. In contrast, her sister has a high school report with gold stars for effort & all subjects treated equally.

I was furious. My baby has fought past being born so tiny that she lived in an incubator; she fought apnea; she worked so hard to read (something that didn’t come naturally); she has emotional intelligence to rival most adults; she is a young carer; she has mentally prepared herself to be in daily physical pain & smiles through it; she worked like stink to pass those exams and yet she was deemed insufficient by a margin of 2 marks. She didn’t see how close she was – she saw “failure”. The piece of my mind that I’d like to give Gove, Morgan, & Greening may leave me without a mind. This narrowing of the curriculum and constant testing is stamping out the creative sparks that we’ll need in years to come.

So she asked to rebel, much like getting a statement haircut after a big break up. Step 1 was pink hair and I agreed to dye it for the final day. Step 2 was leaving primary behind – I genuinely feared her going out in a blaze of verbal glory, but she took the high ground and walked out with her head high (mentally flipping the bird as she left). And that was that.

She’s using the summer to find herself & that includes strange hair colours. We’re watching a pre-highschool reinvention of herself & it’s fascinating. She’s ditched the little kid clothes for older, but sensible shirts & jeans. I’m watching me grow up from a distance, but with a lot more self-esteem! Yes, we’ll have to get busy with the Head & Shoulders to remove the colour before school starts (eye roll), but for these 6 weeks the girls are allowed to be their genuine selves, whoever that may be.

We’ve just got back from a week at Disneyland where she asked to ride ALL of the rollercoasters on hoiday. I feel sick letting her put her body through that kind of strain – she’s already in pain most days & her back is a big culprit. Ibuprofen, TENS, & physio tape already feature quite regularly. Now, I could insist that she protect her joints at all costs, but shit, what right do I have to sap the joy from her life? She knows that adult life is going to hurt, but the pair of us are adrenalin junkies. At her age & into my teens I rode the coasters, I rode horses, I cornered so hard on my motorbike I could pick daisies with my teeth. So each time she wanted to go on a gut wrenching ride off Mr Geek went & rode with her.

Did it kill her? No. Ok, near the end of the holiday Mr Geek had to carry her out of bed & she gained wheels just like mum for part of the day as she couldn’t stand. Most days we paced quite well, the day before we’d thrown caution to the wind, but had the “best day evaar”.

Hell, even I rode a coaster – Mr Geek scoped it out and made sure it had head & back supports, I spent the previous day resting, he lifted me in – I screamed for the entire ride (on which my kneecap moved completely out & I pulled out both shoulders) – he lifted me back out & helped me pop things back, soothed the muscle spasms, then I rested for two days. All that pain for just 5 minutes? Yes. Totally worth it for feeling alive for just a while.

TinyPants looks at me and knows what’s coming – right now she wants to live as much life as possible instead of snatching 5 minutes of flying.

So, yes I’m letting her dye her hair far earlier than I ever thought I would, but it’s a small price to pay for the catharsis that its brought her. And as for Beanpole, well there’s no hair dye there – her genuie self blossomed at high school and my meganerd is blossoming into the intellectual fangirl that I expected, but she deserves a post all of her own.

Note: I’ve spoken a lot about pain here – for more info on Ehlers Danlos Syndrome, please read this post.

A Generational Pivot Point… or is it?

Every generation has defining moments when everything is brought into sharp focus and speaking your mind comes bundled with the threat of a backlash from those seeking to silence your freedom of thought. 

For my parents it was the wars fought in Vietnam & Korea. My Dad missed conscription by a year. Both he & my mum were hippies & pacifists. They personified the 60s and I love trawling through the photos they kept seeing these people that existed before I remember them as adults.

My grandparents, it was WWII – my paternal Grandfather was in the Canadian Army deployed in Italy (then France), shot three times and like the black knight still suggested he was up for more. Tough as old boots, he lived into his mid-90s out in Canada. My maternal Grandfather was in the British Navy in the South Pacific. They both fought against fascism and returned with physical & mental scars. My maternal grandfather died shortly after due to cancer caused by radiation from Naval experiments. I have a personal beef with Von Neumann.

My great grandparents differed. My maternal Nanny spent so many hours telling me about living through the WWII Blitz in London, and before that working during WWI when my great-grandfather was in the British Navy. She saw women given the vote when she was 26 (1928). in contrast, my paternal Great-Grandparents were farmers in Alberta, Canada having arrived there a generation earlier after fleeing Germany and walking (yes, walking ) across Siberia. I never met them, but seeing photos as an adult, my Great-grandmother looked just how I imagined her as a child outside her hand built log cabin. 


As for us, Mr Geek & I were born in & remained in the UK to reasonably affluent parents who had long since hung up their flares & gogo boots. We were born as Citizens of Europe and comfortably grew up embracing other cultures whilst feeling a bit sheepish about the behaviour of some of our more stereotypical ‘Brits Abroad’. We embraced ‘alternative’ as a longer than technically necessary rebellion with our massive baggy jeans with chains, coloured mohawks, nylon dreadlocks, and more eyeliner than an Ancient Egyptian. We were comfortable just being ourselves. Then a chain of events led up to the worst family conversation of my lifetime:

“I think I’d prefer not to know and if the bomb drops to think, oh light. Then gone.”

“Agreed. I wouldn’t want to live through that. Or worse, live through it and be ruled by Trump.”

… and I just sat listening with that rising feeling of panic you get when you think your children are in danger…

So what pivotal moments turned that purple haired rocker into a muted mother terrified of the actions of a man the other side of the world?

As kids the word terrorist was familiar – the IRA were regularly planting bombs (one of which blew up 15 miles up the road). In 1998 a peace agreement was signed and people carried on. Incidents like the nail bombs that went off in brick lane, London in 1999 hinted at a Far Right terrorist movement rebelling against the authorities tackling internal racism and were treated with disdain. Concurrent life sentences were handed out and life settled as politics became more centred on society. Organisations like Sure Start were created to help struggling parents fulfil their desire to be productive parents, a minimum wage was enforced, government assistance started to help those in work to combat poverty…

2001 – 9/11 happened (or 11/9 over here). Suddenly the US were involved and after gathering ourselves from seeing horrific sights just unfolding on what felt like every screen in the world, everyone held their breath waiting for retaliation. We didn’t have to wait long.

2004 – Beanpole arrived. At 24 I’m regularly using crutches for “SPD that never went away after pregnancy” (yep, that happens *insert sarcasm*). I literally didn’t know which end was which, but this tiny 5lb little thing was now the centre of my universe.

2005 – A most excellent wedding (can you tell I’m 4 months pregnant ?). Mr Geek looks so young! TBF we were – he was 23 here & a lady never reveals her age.

2006 – TinyPants arrives in spectacular style waaaay too early & refuses to acknowledge that she has to breathe for herself. It’s just too much effort, so spends the next 6 months traumatising us. We continue to just be us, but with tiny rockers with us.

2007 – Sophie Lancaster was murdered by teenagers in a park she was walking through with her boyfriend. Even now, I can’t go back over what they did, but they were attacked for looking different. For looking like we did. She was 6 years younger than me.

We were settled into our own house by now with an ever expanding broods between us & the GypsyTrees. This was my favourite time of all.

2008 – The Credit Crunch TM. Somehow the banks lost most of their money & everyone looked a bit shocked when it wasn’t down the back of the sofa. The banks weren’t keen on paying for it, so convinced the government that they’d have to pick up the tab… meanwhile, Iceland who maybe possibly lost all the country’s money wiped the date clean by firing it’s government, cancelling all debts of everyone in the whole country and starting again. (Fast forward & who’s still in austerity? It’s not the people with fish money)

My first outing in a wheelchair. More often using my funky stick when things get too much. (I’d not realised until I looked back at photos that the stick appeared so early.)

2014 – Gamergate started. (Why? Because an ex boyfriend wanted revenge on the woman who’d moved on). It wasn’t exactly new, but the ferocity of people online suddenly increased. By this point, I’d been playing regularly online for over a decade. Men posting their genitals online was nothing new – if anything, it was boring. But there was a shift in the tone. I started playing male characters outside of my known & safe guild.

2016 – There ought to be a room 101 for this year, but here goes. Leaving all the celebrity deaths aside just for now: The UK voted to leave the EU against the advice of all financial & political experts because the then Prime Minister used it as a vote winner to get elected. Once the vote went horribly wrong for him, he promptly resigned and scuttled off vacs to his wealthy family leaving a leadership contest between a woman who complained people were being mean to her, a man claiming that prayer cures gayness, an ex education minister who most teachers would eagerly be left alone with a hot poker for 10 minutes with, a floppy haired buffoon who’s lifetime achievement was getting stuck on a zip wire, and Little Red Riding Hood’s Granny post Wolf transformation. One by one they stood down after realising that they weren’t actually fit to run to the shops let alone run a country, until just Wolf Granny was left; our currency crashed (further); The political opposition ate itself and became defunct; Then the US voted in Trump.

At which point the whole of the world turned around at America and made this face:

So here we are. It could so easily be a message of doom & gloom, but as one year closes another opens and I remain infinitely hopeful that Trump will be nullified either by being such a tremendous twat that he impeaches himself or that the actual politicians will keep patting him on the head & remove his Twitter account. I’m hopeful that an effective treatment for EDS will be discovered and we can stop me (and so many others) falling apart. I’m hopeful that Brexit negotiating will take so long that it won’t be seen in my or my children’s lifetime (or, that EU opt in becomes a thing). I’m hopeful that I’ll still be working this time next year. I’m hopeful that Beanpole continues loving every second of school & TinyPants survives the SATS relatively unscathed (seriously year 6 teacher, keep telling her that her best isn’t good enough, see what happens…). I know we’ve lost so many special people this year, but in the words of one of them:

And with that, my survival rate for shitty times is 100% so far. Despite appearances , I seem to have a track record for surviving and if you’re reading this you have too. Let’s keep this up for 2017.


I Do Not Like Green Papers Ma’am. @PennyMordauntMP

This article from The Disability News Service is a pretty accurate reflection of the state of the UK right now.

Having openly disregarded out of hand the findings from the UN that they are guilty of “grave or systematic violations” of the human rights of disabled people, our government is looking into making anyone claiming disability benefits meet regularly with an “employment coach” (read careers advisors with powers to take away your money). Now whilst this has been presented as helping people with disabilities get back to work, this will apply to anyone who isn’t in an institution. Read people needing physical care at home, people suffering a mental health crisis, people in constant relentless pain. People who can’t always fight back.

As someone who is negotiating a reduction in hours to hang on to what physical & mental health that’s left, this is scary. The argument behind insisting that people with disabilities work is to give a purpose and improve mental health. Well my dear Tory MPs, let me give you some cold hard facts.
I love my job, but pushing through regardless has directly caused some very dark thoughts. And I am infinitely lucky to have the husband that I do because he listens every time I need to shout my frustrations at the world. Most people wouldn’t have the patience. (You, by the way, don’t deem him to be a carer despite dressing me every morning, helping me bathe, cooking for me, & cleaning. why? Because he does all of this AND holds down a successful job. Sounds fair, yes?)

Despite holding on by my fingernails, I work partially because I’m too scared that the state won’t catch me if let go.

A day of work leaves me with levels of pain that regular strong painkillers & morphine don’t touch. This is not “oh, take a nurofen & have a glass of wine”. This is unbearable pressure on my spine, deep bone pain in my joints to a level where without painkillers I’m physically sick. Now tell me how running your second home paid for out of Government coffers gives you a headache…

A day of work leaves me so exhausted that I can barely hold a conversation with my children. (I am eternally thankful for my husband & our parents who take care of the important kid stuff). 

Physical pain takes a mental toll. I’ve lived my life as a pacifist, but I wish every MP who thinks this is a great idea could live for a month with these daily pain levels. Of course, they’d need to carry on with their current lives because why should we be cut any slack? It does you good to be at work after all.

Since I went downhill 18 months ago, I’ve been asked on 4 separate occasions by government employees (DWP, Social Services, & Occupational health ) “do you think about killing yourself?”. Always matter of fact, like it’s a reasonable conclusion to draw because EDS doesn’t have a cure & no one knows how to effectively manage the pain. 

Putting aside the wholly inappropriate nature of assuming that someone with a disability would consider death preferable to their current situation  being permanent, the answer has always been no. Until I started trying to work through another physical dip this September. So here I am trying to negotiate putting my health & family before my job. Because, dear Tory MP, it’s not a job that gives me a reason for dragging my arse out of bed despite it hurting to breathe a good percentage of my days. It’s my family. I make a difference by bringing up two beautiful & well educated children. By growing old with my husband and reducing my financial burden on the NHS by taking care of my health.

You can try & strip away disabled people’s dignity in the name of austerity whilst you pander to large corporations who pay less tax than I do, but in the end you’ll be seen for exactly what you are. Hopefully by the general populous, but better still, I’d love to be wrong about the whole religion thing and see you meet God at the pearly gates and ask you directly, “DID YOU DO UNTO OTHERS….?”.
Note: I have started my official response to the green paper, but the form is so long and poorly worded that it is testing the limits of my speech to text. It’s almost as if they don’t want responses…

Officially Funny. Or am I?

Soooooo… guess who got a nomination for a blog award for being a source of amusement?

The health blogger awards are quite big in my twitterssphere with many of my friends online sharing similar experiences of trying to quite literally hold it together and wobble through life. So, yeah, even being on the list is quite awesome – but winners are picked on endorsements.


Whether you read my blog to laugh at or with me, or if by some streak of luck I’ve managed to help in any way, I’d really appreciate you clicking the link & pressing the big purple “endorse” button to validate my online existence. 

https://awards.wegohealth.com/nominees/12945
Hey, you never know, you might be able to say “yeah, I knew her before she was huge”…. because in the words of The Brain “We’re going to take over the world”.

Clearly feel free to spread the link far & wide 😉

NARF.

A Moan At @DavidLloydUK About #Equality & #Accessibility

So, here’s a little email that I sent to my local David Lloyd leisure club after being told that the accessible access gate isn’t faulty, instead they’ve disconnected it. Why post the email online? Well, mainly because when verbally complaining, staff attempted the “think of the children” emotional line with me because unattended children had used the gate to leave the club. I have kids – I rather hold that it’s my responsibility to make sure that they behave. (Give it a few years when they’re teens, that comment may come back to haunt me). The next reason almost had me speechless. Almost. 

I shall post their reply once received…

Dear Sirs,

The Disability Discrimination Act (1995) states that it is unlawful for a service provider, without lawful justification, to treat a person who is disabled less favourably than other people for a reason related to his or her disability. Less favourable treatment might occur if a disabled person is refused a service that others are receiving, or is provided with a service of a poorer quality than that which others are receiving.

Able bodied members of the David Lloyd club in Worthing may access the club via an NFC turnstile system which automatically grants access. Previously, this was the same for the accessible gate for disabled & pushchair users. This is no longer the case.

I am a full time wheelchair user and currently in order to enter or leave the building, I am required to verbally attract a member of staff at reception who then must press a button to open the gate & let me through. Not only is this often not appropriate as other members quite rightly require the receptionists’ attention, but doing so draws attention to my disability and makes me disinclined to make full use of the club. The very fact that I am not able to make use of the specifically installed disabled access gate without staff assistance because it has been disconnected from the NFC pad contravenes the above Act as a poorer quality of service is being provided specifically because of my physical disability. 

On a number of occasions I have requested that the disabled access gate be reconnected to the NFC card system as above and my request has been declined. Today, I spoke to your Sales Manager of the Worthing club at which we hold a full family membership. Upon requesting a date when the gate would be fixed, I was informed that it would “never be reconnected”. The reasons stated for this were that other members had been attempting to let non members into the club, that thefts had occurred, and that children had used the gate to leave the club. Based upon the legislation above, I will address each of these below.

On the matter of members allowing non-members into the club, this is surely a matter of insisting that all members use the turnstile gates unless they are pushing a pram or have a physical need to use the gate. This onus is on the club staff. It is not acceptable to remove equity of service to disabled club members where a reasonable alternative is available, albeit not as easy to implement. 

Where theft was used as an excuse to remove the equality of service, even if it was proved that thefts were directly linked to non-members, again it is not acceptable to provide poorer services to those with a disability when a reasonable solution would be to use the turnstiles as above and expand cctv coverage.

Finally, to address the matter of children using the gate to ‘escape’, with the exit turnstiles entirely open to exactly the same this is essentially a non-argument as these have not been closed off in any way. However, to give it consideration, across the rest of the club parents are reminded that they are responsible for the behaviour of their children. I am baffled as to why this would not apply to the front doors.

I would therefore appreciate your response as to how you intend to ensure that equal access to the club’s facilities will be provided for all members with reference to the Equality Act above. 

Regards

Mrs B

Blog notes:

Now for you who are saying it’s just a door, I know. But actually it’s more than that. It’s a general attitude that people with disabilities shouldn’t complain & just be grateful that something is provided. Or that there are fewer of us, so the majority is more important. Conversely, there might be more if they could get in without being highlighted as ‘other’.

And for those who I can hear audibly tutting because the person with disabilities dares to be a member of a decent health club. 1 – it’s none of your business. 2 – I work full time, so any stereotype of me using taxpayers money to swan about can be put to bed. 3 – and even if I wasn’t working, my club membership allows me to keep up hydrotherapy in a warm pool which reduces my need to use the NHS pool (at real expense) and subsequently other NHS services as physiotherapy keeps me as good as it gets. And urgh that I feel I need to justify myself.

Edit – their initial response. Which I feel just repeats the reasons I have listed. I’d be interested in your thoughts.

Good Afternoon Holly,

Thank you for your recent email regarding the use of the gate at Reception.

Our Members requirements are highly important to us and we aim to provide you with the best service and facilities that we can.

The Club chose to remove the card reader at the gate approximately 4 years ago for the reasons more fully explained below:

1. Members were taking the easy route and not swiping their card
2. Non members had gained access
3. There was never a card reader to exit the Club – Reception still needed to open for families with push chairs, Members who use a trolley style sports bag as well as for our disabled Members

With regard to health and safety, we also had to look at the fact that if an exit card reader were to be provided, kids could exit the club without parents knowing.

However, with all of this in mind we want you to feel comfortable and happy when using the Club therefore your points have been raised by [redacted], General Manager to the Team here at Head Office.

Currently, there is a Team here at Head Office reviewing card readers and service issues in our Clubs therefore please note that this is all under review.

Personally, I completely understand why you feel this way as I would perhaps feel the same if I had to keep getting the attention of a Team Member every time I wanted to enter or leave the Club.
However, I also do understand why for health and safety reasons we have taken the reader away.

I would like to thank you for your email and would like to assure you that [redacted] will be speaking with the Reception Team to ensure that for now (until we may add the card reader again) they are vigilant and quick to open the gate when necessary.

Best wishes,
[Redacted]
Member Communications Executive