Models of Diversity – Challenging Stereotypes

I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have.  When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..

Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini.  No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model.  Do these “perfect” images often published on social media influence the body image of those viewing them?  Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.

In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.

Are Disabled Only Runways A Good Way To Showcase Disabled Models?

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Selina Towers – photo from Models of Diversity

A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.

I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.

For the full article go to Models of Diversity

Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

Monday Magic – Inspiring Blogs for You!

Another week, another Monday – so that means one thing here at PainPals!  Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!

Monday Magic

There have been two major events in our house over the last week.  The first was a long awaited appointment with a geneticist for the beautiful girl(BG).  I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation.  Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis.  My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18.  So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18!  Then the children’s department decided that they really weren’t the right people to see the BG.  Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.

Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating.  Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history.  The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself.  No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems.  Ringing bells in my ears!!!  More of this in another post…..

The second major event was our old dog Sam having a massive haircut with our fantastic groomer.  Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back,  hips and rear legs.  He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy!  He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.

Sammy

Spoonie Sammy

Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before.  Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health!  Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great!  If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.

Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends!  The first post is a shout out award for all us spoonie bloggers!

http://www.balancedespitethechaos.com/blog/an-award

https://jamisonwrites.com/2017/07/12/this-is-why-i-hate-summer/

https://sewprettyinpink.wordpress.com/

http://www.thisautoimmunelife.com/2017/07/23/national-cheesecake-day/

https://whenwomeninspire.com/2017/07/22/mental-health-tips-for-women/

https://bethanykays.com/2017/07/24/poetry-45/

https://beingcharis.com/2017/07/20/qa-with-charis-about-her-journey-with-ankylosing-spondylitis/

https://sleepysantosha.com/how-to-start-yoga/   plus Youtube channel: https://www.youtube.com/channel/UC0ROkm_8Bjk0qOQ13XYOebg/feed

https://carlyscrazychroniclife.wordpress.com/2017/07/11/alternative-therapies-or-not/

http://voiceathlete.co.uk/dystonia/

http://momssmallvictories.com/self-care-for-moms-with-chronic-pain/

https://www.my-ra-perspective.com/single-post/2017/04/24/Working-and-Disability-Advice-on-working-while-disabled-and-knowing-your-limits

https://edsjour.blogspot.co.uk/2017/07/10-tips-for-coping-while-in-waiting-room.html

http://www.bloomingmindfulness.co.uk/?p=440

http://www.mesheacrysup.com/blog-living-a-fibrolife/re-visitedfibrosecretc-part-5-i-was-afraid-to-have-a-good-day

Funfetti-Cheesecake

Picture from “this autoimmune life” blog

Please make someone’s day with a follow, like and comment!

Claire x

I have shared this post with Honest Mum blog


Brilliant blog posts on HonestMum.com

The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!

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Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

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I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]

My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.

Disjointed

Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

A Fatal Blow over Disabled Parking

Last night we watched a repeat of the Channel 4 documentary “One Killer Punch“, which examined the phenomenon of a one punch kill.  It was very emotive and as the mother of two young adult males, I feel devastated for the four families torn apart in the first and last cases shown.  Difficult to watch and I am sure extremely hard to make, there have been calls for it to be shown in all secondary schools. Everyone will have a different and personal opinion whilst watching these young men and the families speak on film and this is in no way meant to belittle a heartbreaking subject.

Rather I want to highlight the other case which all hinged upon the right to use a disabled parking bay.  I know that this is another emotive subject that those of us on “spoonie” social media will see discussed time and time again.  How many times is someone judged from the way they look as to whether they are worthy of that bay?

imageIn this heartbreaking incident, a man died because another judged that he was not in need of this parking space in a supermarket car park.  The attacker saw a gentleman walking out to place some goods in his car and, because he wanted the spot for himself and his disabled wife and he deemed the other unworthy of parking there, he got out of his car and hit the gentleman.  He didn’t stop to notice the blue badge sitting on the dashboard, or the name on it that showed it belonged to the gent’s wife.  He didn’t wait to hear that the lady was still in the store and suffers with rheumatoid arthritis.  Instead with one punch he floored a stranger and then calmly got back into his vehicle when he “heard his head crack on the ground” and drove home.

Several hours later a distraught family had to make the decision to turn off life support and another family suffers as a member is sent to jail.  What a senseless waste of a life.

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I know that there are some people out there who use relatives blue badges/disabled permits illegally, but I would like to think that they are in the minority.  In the UK being issued with a blue badge is no easy task now, and I’m sure that it is equally difficult elsewhere. I would  like to say to everyone please don’t be too quick to judge someone who doesn’t look “disabled” using a disabled parking bay – we are all different and our needs can vary from minute to minute.  Believe me, I would rather be skipping the length of the high street than needing to use a stick and wheelchair to enable me to park closer to that shop!

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Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life

Great initiative by Tesco to safeguard disabled parking

How many times have you tried to park in a disabled bay for yourself or a passenger, only to find that none are available and that several of the cars already parked aren’t displaying a blue badge (disabled badge)?  It is so infuriating, but why can’t people appreciate just how difficult those extra few metres can be for someone who has mobility issues, or that the narrower parking spaces make it so difficult to juggle walking aids or wheelchairs?

I have just read this article in the Telegraph about a great initiative to safeguard disabled parking at Tesco stores.

http://www.telegraph.co.uk/news/2016/10/09/tescos-hi-tech-plan-to-hunt-down-cheating-shoppers-who-use-disab/

#Ehlers Danlos radio drama “Tinsel Girl and the Big Reunion”

Whilst scrolling through the BBC iplayer earlier searching for a good drama to listen to, I came across this series with the introduction “An uplifting comedy drama about the lifes, loves and misadventures of wheelchair user Maz”.

I was pleasantly surprised when I heard that main character Maz has a genetic condition that affects her connective tissues called Ehlers Danlos syndrome.  It makes me hope that the syndrome is becoming more widely known and recognised in the mainstream.  Actress, fellow zebra and patron of Ehlers Danlos UK, Cherylee Houston plays main character Maz.

Follow this link for Episode 1 of “Tinsel Girl and the Big Reunion” by Lou Ramsden

http://bbc.in/2aC2wIX

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Poor mobility: Ehlers Danlos v chronic pain Norfolk part 2

In my last ramblings I told you how I found the wheelchair really did help to increase my freedom whilst on holiday.  I have since started to receive some useful tips about the type of chair to really help increase my independence as well as my freedom, and have filled out the forms for the NHS service.  Not sure how this will work out, but we have decided as a family that a wheelchair will become a permanent feature in the family.1069398__safe_solo_oc_simple+background_transparent+background_earth+pony_wheelchair_handicapped_artist-colon-sketchydesign78_oc-colon-melody+shine

Something that I hadn’t expected was that health problems other than the chronic back & leg pain would necessitate the need for the chair whilst we were away.  The weather was beautiful and we were really blessed, but – and I do know I shouldn’t moan – it was extremely hot and humid.  I can already hear some of you shouting “but the woman can’t cope with the cold, or air conditioning, so surely hot summer weather should be good”!  You would have thought so – but for many of us with chronic conditions our bodies become highly tuned barometers and actually can’t cope with any exoctopus-the-pirate-1412024-639x470treme changes.  So becoming too cold or too hot will have an effect upon the nervous system, which in turn controls all the other systems of the body.  This is why one person can seem to have such a Pandora’s Box of conditions –
and once that lid is opened they can come tumbling out together or appear slowly over time.  We are all different and I do now realise that many afflictions that I have had throughout my life are actually all part of the Ehlers Danlos.

For as long as I can remember I have felt rough when the weather is humid – headaches, migraines, nausea, swollen feet & ankles,wrists & hands,  dizzy spells – all in varying degrees, but over the last couple of years I have had an increasing number of faints, black spots in front of my eyes and dizzy spells. puppet-2-1623730-639x425 The sudden sweats are awful – I feel like I’ve been in the shower, but no they aren’t “hot flushes” as I can feel quite chilly.  So during our week away the wheelchair was great for those very light headed spells when I was struggling to see.  It is all very well the nice neurologist telling me that I must lie down when I get the feeling coming over me, but that isn’t so easy when walking the coast path or perusing the gift shops.  I have said in a previous post that I don’t have an actual diagnosis as yet, but I have become increasingly aware that the symptoms fit in with a POTS picture – that is postural orthostotic tachycardia syndrome – or similar and this is more common in the Ehlers Danlos population.

My GP is aware and as I did a good swoon in her surgery last month, she advised me to increase my salt intake. salt-spoon-1318134-638x350 On one particularly hot day, Duncan had gone into a vinyl store and my girl was pushing me when we stumbled,quite literally,upon a butcher’s shop with a basket full of pork scratchings for sale outside the door.  This is probably not to be recommended as the healthiest option, but a hand full of these certainly helped me to feel better.  This last week at home has been tricky as the symptoms have been rough again and the bright light during a day out triggered a migraine.  I find that my senses become heightened, particularly the sense of smell – not good when the family pet has a rank case of halitosis – and taste immediately prior to a turn – be it a faint or a migraine.  The day out that pre-empted the migraine was to a local National Trust property with mum, Dunc, my daughter & nephew.  I can’t believe that I am saying this, but I missed the wheelchair!  I felt rough, it was a lovely day and I couldn’t go for a walk with the family.  I forced myself to walk through the flower gardens, but every step was painful and I think that the impulses from my spinal cord stimulator combined with the bright light may have been making the head pains & dizziness worse.light-texture-1195217-640x480  Within a short time of getting back into the car, the nausea had started and I had visual disturbance, followed by severe head pains. Great, something else to sort out!!

This weekend has been just us “girls” as all the men are away.  We’re doing ok, but my girl, having already relocated both shoulder joints when I woke up, then found me passed out on the bedroom floor yesterday.  She is becoming quite the expert – good job as her own shoulders slip & slide, and she can’t stand up without seeing stars.  I feel a more detailed EDS post coming….

 

BTW: hope you like the new PainPals logo! painpals logo

First forays in a wheelchair – Norfolk part 1

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We have just returned from a week away on the Norfolk coast (East Anglia) – hubbie, the lovely girl, my parents & 5 year old nephew.  It was touch and go as to whether I would go and this wasn’t down to my health issues, but rather my adolescents!!  Anyway after several difficult days – sorry can’t share! – we left the engineer in charge.  Would we come home to a house?  What about the little car insured for him to drive?  Wild parties? House guests? A traumatised dog?  The list could be endless leaving 20 & 17 year old boys home alone.

But away I went and we were blessed with the hottest week of the year so far.  When there is a little boy in the house and you have a sea view this can only mean one thing – the beach!  Sadly this was a part of the holiday that Auntie Claire was unable to take part in.  For a start just physically getting over the pebbles and onto the sand was nigh on impossible, and then there is the issue of cold, wet sand playing havoc with the nerve pain in my foot.  Paddling is a no, no!  Fortunately good old grandma & grandad were fantastic and sat on the beach, built sandcastles and went paddling – with a little help from Uncle Duncan & our lovely girl.

 

It was important for me that I was able to do as much as possible – both for myself and the family – but without flogging myself!  Not an easy balancing act, particularly with such hot weather.  My Ehlers Danlos symptoms – all POTS symptoms, although not formerly diagnosed yet, cardiology appointment next month – were really bad in the heat and this didn’t help with the whole pacing myself.  This is a whole post for later in the week.  As some of you might remember, I had bitten the bullet and hired a lightweight wheelchair in order to be able to increase my mobility – an attendant rather than self propelled as we figured that my poor old shoulder joints would not cope with wheel turning and remain in socket!

The first thing to point out is that Duncan returned a whole lot fitter….he would like me to say with a six pack, but we were only away for a week.  This is not to say that I spent all my time in the chair, but it certainly opened up possibilities for us that wouldn’t have been possible if I was walking.  A strong plus for Dunc was that he pushed me to the restaurant on one of our evening out and was able to have a drink – the journey home along the cliff path after a couple of ciders incorporated a few wheelies!  I was able to stay out for longer than had I been on foot, we were able to go further afield and I was better able to manage my pain.  The benefits far outweighed any negative concerns that were nagging me and it was a godsend as the weather grew hotter and I fainted more!

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The beautiful sunset & sea view from our living room

Many older people started chatting about difficulties getting about, finding a suitable ramp on the coast path, why I needed a stick, had I injured myself and I am too young to be like this.  Younger people don’t really engage in chit chat in the same way, but I was aware of a few sidelong glances, not so much pity but I hope that I don’t end up like that followed by embarrassment. The night that we went out to a lively Greek restaurant, we did leave the chair behind.  Great food followed by entertainment provided by the Constanzia brothers – the sons of the owners, who in their hayday appeared on Barrymore and Pebblemill (yes, we are talking ’90s!).  Of course as the music sped up and the tambourines& bongo were bagged by the children, the band encouraged the audience to learn some Greek dancing with the assistance of the waitress.

Our beautiful girl was definitely not going to get up to dance,  the picture above is the closest my brother(who came up for a day) will ever get to dancing – that is, his son playing the tambourine! – so the Greek mama, an elderly silver haired lady turned, to me.  In days gone by I would have been the first to jump up and I really miss that me, but I made my excuses that I couldn’t and she misunderstood me.  She thought that I meant that I didn’t know what to do, so when I lifted my stick off the floor and shouted over the music that I ‘m unable to walk properly, the poor woman was mortified.  I didn’t feel upset or put out as she didn’t know – how could she?  Sitting at the table, I can put on a pretty good show of being fit and healthy, after all pain is invisible as is the metalwork and electrodes in my spine.  What a shame then that my disability caused a third party such embarrassment.

I did make the best of it, in fact we made the best of it.  The house was a godsend for the mornings when I was unable to go out or the afternoons when I just needed to collapse with exhaustion.  We gave my parents some time off from grandparenting and did a trip to the zoo.  Children are so accepting and I made various little friends that day, as I was on their level in the chair.  I think that they just saw it as a buggy!!  We also managed to visit some exhibitions with our arty daughter – one of them contemporary and I must admit that I didn’t “get” all of the exhibits!  But it was great for Duncan to be able to push me to a fairly inaccessible 14th century church and then for me to be able to stand up and hobble round inside to view the pieces.  Our girl came away from the gallery in Holt inspired, with lots of encouragement from the gallery owner and with a packet of oil paints under her arm.  The table at home has swapped charcoal and watercolours for oils….

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Our girl’s painting of her grandparents’ bull terrier

Back home the hot weather continued on Sunday.  The house was still standing, the freezer somewhat emptier and the kitchen somewhat dirtier.  Our old dog, Sam, was delighted to see his mum, dad ……File 24-07-2016, 23 59 19and sister!

The five of us went for a trip to our local park together – believe me that this does not happen often these days.  I pushed the wheelchair initially and actually my walking was really helped by this.  Maybe a zimmer or triangular frame is in order!!  It was actually the EDS symptoms that drove me into the chair and I know that the boys were embarrassed, not for me, but for themselves!  They were far too busy catching imaginary Pokemon – I mean what is more embarrassing – running around after make believe Japanese creatures or pushing your mother in a chair?? Kids…..even if they are adults….nearly!

The chair has gone back and we now need to make a decision – although I think that it has already been made really.  I have the forms for the NHS service, but I am under no illusion that this will provide the lightweight, transportable type model that we have had.  Amazon, here I come…..

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Family selfie – in case the brothers were missing us!!

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At the beach – including Auntie Claire & her chair!

 

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