Fainting for my Motability Chariot

Fainting in the car showroom wasn’t something that I had thought would be a part of my week!  We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast.  Not so long ago I was still convinced that I would be deemed too “fit” to qualify.Fainting for my Motability Chariot (2)


It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response!  My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!

Image from a range of products available at http://stickmancommunications.co.uk/

Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.

Grey really is not my best look! Post faint…

Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does.  The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week.  Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time!  But I’m upright today and so writing a very speedy post having missed out all week.

My Chariot!

Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!

My first forays with Motability

A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing.  I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope.  When it did flop through the letterbox, I couldn’t even open it, I felt that sick!  Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.Motability Forays

Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life.  But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to.  Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme  – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out!  But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.

I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car.  Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof.  The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.


The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs.  We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime.  For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!

Boot mounted wheelchair/scooter lift in action

The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep  – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.

Ramp adaptation for wheelchairs & scooters

However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.IMG_20170909_133122830

Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car.  The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme.  With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest.  The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might IMG_20170909_133108400just as well be turned off as I can no longer feel it.

Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!


Little post script……I saw a couple of great looking electric scooters too.  My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?IMG_20170909_161956070_HDR

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.



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

“How to be Disabled…According to Stock Photography” Hilarious article by Autostraddle author Carrie


I have just read this article in Autostraddle and it really made me laugh – the slightly dark, manic humour of a nurse and spoonie!  I want to share it with you…..but if you are a spoonie who is easily offended steer clear!!


“I have to take this moment to apologize. It turns out, dear readers, that I’ve been leading you astray. I thought I had this whole “being disabled” thing figured out — y’know, focusing on intersectionality, various forms of ableism, or political engagement — but nope! My mistake! Apparently I’ve been doing it wrong since birth and need to completely overhaul my approach. And who do I have to thank for such an urgent epiphany? The wide, wise world of Shutterstock.”…….

Full article at this link, do read to the end:

How to be Disabled, According to Stock Photography by Carrie


A Chronic Christmas – inconvenient illness for the holidays

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….



The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x









The beautiful Italian home of Audio Deva


Reading,Cake & having fun – with #wheelchair & #chronic illness! #TBConfacebook

What a week!  Challenging for various reasons – the tilt table test, a cardiac outpatient appointment where the results weren’t available, an almighty faint where the dog failed to break my fall and I cracked my head on the wood floor, and I think along with dislocating my shoulder I may have cracked my collar bone.  This meant rolling out & covering a 12 inch square cake with icing one handed – tricky!!

But the cake played a pivotal role in my weekend.  Earlier this year, not long after being persuaded onto facebook by the younger Sauls (who now regret it, ha, ha, ha), I stumbled upon “The Book Club on facebook” and sent a request to join the closed group.  I had no real idea what it involved, who might be a member or the expectations on me, but I have always been an avid reader.14222267_10154600381361495_2740355709948892258_n  Living with a head full of opiate shaped holes & Ehlers Danlos brain fog has meant that I have struggled to concentrate enough to enjoy reading for  a couple of years.  This last year has seen me come off of opiates completely and start to read again – joining both a local book group and the facebook group has played a massive part in this.  I have discovered authors & genres that I haven’t tried before, I have found netgalley & started writing book reviews again, and I have completely taken over the kindles at home as I have flooded the account with books from the Book Club & netgalley. I have fallen back in love with words.

Back to the cake then…..the Book Club on facebook has just celebrated its second birthday with a party in London.  A fantastic opportunity to meet on line friends, stalk & meet some of the many authors who belong and generally have a night out in a swanky London night spot.

This was a big deal for me as it was the first real event using my wheels!  I have been to the park and the cinema, but not to a social occasion.

The new wheels!

Many of the people who attended were alone and I commented to Duncan that they were pretty brave to attend a big event (about 250 people) like this not knowing a soul.  His response, as my carer & chauffeur for the night, was that I would have gone alone in the past and mingled & talked to anyone.  The old me….I am still struggling with this!  But we had a fantastic evening – don’t get me wrong it was hard, I had to really dig deep and was absolutely shattered by the end.  But I managed to wear some of my old clothes – so I have shifted a little of the weight gathered over the last few years of immobility – and with a slick of lipstick nearly passed for the old Claire.  We weren’t quite brave enough to attempt the train & tube yet with the wheelchair so drove, but we stayed the night in the student engineer’s flat which is up the road from the party venue, meaning that Duncan was drunk in charge of a wheelchair and hopeless at managing the kerbs around Kings Cross!  Of course we completely cramped our son’s style when his flatmate arrived home and we had to be introduced.  His friend asked at midnight if we had been to our party yet – how old did that make us feel as we were getting into our PJs??

The cake? you ask.  I made the birthday cake for the party – copying the group’s colours and logos, it was my guarantee to myself that I would go to this social if it killed me.  The lovely people that we met, the discussions of books, even the student flat, all proved that I am more than my ailments.  Oh….not forgetting that the party actually looked pretty good to the student son as he asked me to invite him to join the group the next day!  Thank you “The Book Club” admin – you don’t know how much this group has helped me this year x

Got myself some new wheels! #wheelchair #mobility

Yes, I’ve finally gone and one it and purchased some new wheels.  I think that any decent midlife crisis has new wheels as a prerequisite doesn’t it?  My new wheels are sleek black, with a red chassis, great suspension, smooth handling, top speed of…….getting a bit carried away here, I think.  No sports car for me or even a moped….but I have bitten the bullet and am the proud owner of a nearly new wheelchair.  I cannot believe that I am in my 40s and so excited by my new toy!!

My walking has really deteriorated over recent months, as on top of the nerve pain, my hips and knees have popped in and out like the hokey cokey. The problem with this is that my poor old ligaments are now so stretched that the muscles go into spasm to hold everything together – and the ligaments & muscles both hurt….like crazy!  On Sunday a short walk resulted in a well timed faint and resulting hip displacement which saw me being lugged like a sack of spuds from front door to the lounge.  Son number one announced that “Mum, you are too heavy” – charming! Nothing like a weight comment to make a girl feel good about herself.  Anyway this led to some serious ebay surfing and watching – not shoes this time sadly – and Duncan collected my wheels from a very kind couple last night.  The chair was only purchased 8 weeks ago for an elderly father, who has since passed away, but apparently they were very happy to hear how they have helped us out as finances are tight.

I attended my first governing body meeting of the school year last night, and by the end I could scarcely stand let alone walk to my friend’s car.  I don’t expect people who hardly know me to understand or even to appreciate how slow I am – most of them left together and of course were quicker than me – but how do you explain when one of them, who helped me to the car, commented that I seemed in a lot of pain? How do you explain that by the end of that 2 hours it was not only my back and leg hurting me, but my shoulders were screaming at me to such an extent that I couldn’t lean on my arms let alone pick my bag up? So instead a smile and innocuous comment along the lines of “there is always pain, but life goes on” and then I said that I was about to become the owner of a wheelchair….it really will make a difference on that walk between the front of the school and the year 6 building!

When I arrived home my chariot was awaiting me in the hall – apparently my lovely girl had already taken it for a spin up around the house.  Olly acted completely nonplussed by it – of course he had been embarrassed by pushing me in the hired one as a typical 17 year old lad – but then I caught him sitting in it in the dark last night trying to take the brakes off, ha, ha, ha!

So off for a spin in the park if my joint pain allows and the rain holds off……


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!


A Helping Hand – or Stick, or Crutch

I was getting ready to go out the other day, and as every self respecting girl (well girl in my head!) attempts to do I was trying to coordinate my wardrobe.  T shirt – check; jeans – check; jacket – check; shoes & handbag – check; nearly there…..walking stick – hang on a minute!  No blue walking stick!

I remember clearly a few years ago when a mum at the school told me that her daughter, a friend of my then “little” girl, had drawn a picture of a girl with a pink stick and declared “I want to have a pink sparkly stick when I grow up just like Lucy’s mummy!”.  If I’m honest at the time I didn’t know whether to laugh or cry.  My dad had thought it would be funny to buy me my first walking stick for my 40th birthday and I still wasn’t too sure just how hilarious this was – life begins at 40….but not sure a stick is every woman’s dream gift!!  But on the other hand how great that a little girl didn’t see me as some old crock who couldn’t walk properly, but rather she saw the pink, sparkly stick as a desirable item.  Well, what little girl wouldn’t covet something covered in pink & purple glitter and sparkle??

Since then my collection has grown, and I figure that if you need a walking stick at my age then it really should be snazzy…..and match your outfit.  Vanity? Definitely. Essential? Sadly these days, yes!  Over recent weeks the pain in my hip has become more troublesome and I am using the stick in the house now as well as outside – I have been a very proficient furniture walker.  I’m sure that my right side has been compensating for the nerve and chronic pain issues in my left side – resulting in a flare of EDS & dodgy collagen in my subluxing right hip joint.  This brings me full circle to my first point – that is that I am missing a blue themed walking stick in my collection!

For some fun I’ll show you the canes that I do have – please note that this is just my opinion of a brand that I own and I have not been paid to promote any manufacturer.  My walking sticks are manufactured by Switch sticks, a firm based in London, and are folding adjustable, stylish & affordable. They advertise as ” Switch Sticks are the range of award winning stylish walking sticks, crutches, seat sticks and accessories that keep you moving and looking good. They are tough, durable, lightweight aluminium and are height adjustable making them the perfect fit for most people.  With new designs twice a year Switch Sticks are the designer walking aids to be seen with and suitable for both men and women.”

The Switch stick folds up neatly for those who just need it for occasional use or wish to take an extra in a suitcase…..to colour coordinate, of course…..and comes with a wrist strap and carry pouch.  I’ll have a look and list some other similar makes too.  I really like the Switch because it is sturdy and has a great rubber foot, which can be renewed…..but I guess the greatest draw is the fab range of colours and patterns!!  They retail in the UK for £39.99 – https://www.switchsticks.co.uk

My range……


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When my body parts are really failing to synchronise and play ball, I use forearm crutches.  This particular brand was recommended to me by a friend who had seen a review on an EDS site.  They are manufactured in the UK and are aptly named the “smartcrutch”, as they have such obvious features for comfort that our good old NHS crutches lack.  A great rubber non slip foot, adjustable height, but also a good supporting forearm rest that is adjustable.  For those of us with dodgy wrists, elbows and/or shoulders this is a godsend to help relieve the pressure on joints and ligaments.  The forearm rest is padded and can be adjusted from a vertical angle through to a horizontal at 90 degrees to the floor, and is finished with an easy to grip rubberised handle which is also adjustable for different arm lengths.  Finally…..yes, they too come in a great range of colours!!  £89.99, but if registered disabled they will be VAT free.  What’s not to like??


Whilst I don’t use the crutches all the time, and my physio feels that they can actually put additional stress on the shoulder/pec major ligaments, when I do need extra support they are great and I do stand up straighter with them…..of course the tonne of titanium and electrode leads help with that too!!  I’ve given up explaining that the reason I’m so upright now is in order to get maximum contact between my scs electrode and my spinal cord.

Some other websites that I’ve found:





Meanwhile, I’m off to do a bit of colour coordinating…..where did I put my husband’s credit card??