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!


Compassionate Advocacy

Before I write my own piece this week, I want to share this video link with you.  I am aware that some people won’t want to watch and will dismiss it as sentimental.  But I view it as a celebration of 2 remarkable young women – and as we are bombarded with news daily of the harm that we are doing to each other, it is wonderful to remember the good that still exists in abundance.

Thanks to Hospitalprincessblog ( for sharing and Dysotonomia International

“Because Some Teachers Really Do Care”

I have introduced you to Ness at “The girl with the 5 lads” already and tonight I would like to point you to her end of term post entitled “Because some teachers really do care”.

Growing up can be a tricky time for any child moving into adolescence – dealing with growth, raging hormones (particularly aged 7 & again at 14), school work, new schools, exams, peer pressure, social media, etc! – but I believe that for a child with a close family member who has a chronic illness, there are inevitably additional challenges which will present in different ways.  Despite what some of our press would have us believe, there are still many hard working,  inspirational teachers out there who put the children first.

Read Ness’s lovely tribute here:


Fibromyalgia – mystery finally solved?

This is worth a read for those of you with fibromyalgia.  It can be found on the site Liberty Voice (link below) and was written by Rebecca Savastio in 2013.  Whilst a couple of years old, it it still receiving many views and opinions – decide for yourself:

“Researchers have found the main source of pain in Fibromyalgia patients, and contrary to what many believe, it does not stem from the brain. The findings mark the end of a decades-old mystery about the disease, which many doctors believed was conjured in patients’ imaginations. The mystery of Fibromyalgia has left millions of sufferers searching for hope in pain medications. Up until recently, many physicians thought that the disease was “imaginary” or psychological, but scientists have now revealed that the main source of pain stems from a most unlikely place- excess blood vessels in the hand…….”

Fibromyalgia Mystery Finally Solved!

To My Husband

For partners/lovers/best friends/carers everywhere – the most beautiful poem from Wendy who blogs at Picnic with Ants to her hubby. It says it all!

Picnic with Ants

hearts color copy2Everyday He Loves Me

He holds my hair as my world spins

leaving me a wretched mess.

He brings me food

washes my body

cares for our home

He holds me

comforts me

helps me fight my battles.

He kisses me

caresses me

loves every part of me

To him I am no burden

He loves me.

Everyday He Loves Me.

He watches me get my hopes up

and holds me when they fall.

The words are nice to hear,

but easy to say.

Every day, he shows he loves me.

How can I write a tribute to a man who has given me so much?

The words seem to lose their potency after leaving my heart.

How do I express how much I love him?

My heart swells with emotions and words that will not come forth.

This man who shows his love each and every day.

Sometimes my…

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Zombie Apocalypse, Chronic pain & sleep deprivation

I just had to share this great post from Sarah Anne at “The Pain Companion” with you.  If like me you suffer from nights broken by cups of tea, dodgy 4am tv & chick lit, all mixed with pain, you will appreciate this heartfelt post about the Zombie Apocalypse.