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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!

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….

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 ……and 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…..