Busy week last week for all sorts of reasons.  Trips to London, organising and attending a careers night, cinema, theatre, school meetings, catching up with old friends and a charity race night.  The Careers in Engineering was a great success – I did admit to not being an engineer, but to having some pretty good engineering inside of me!  Oh yes, and taking 3 generations of my engineering family with me – I managed to be the most embarrassing mum of all time for our student.  Dad came as a roving host and there was never a glass of red far from his side.  Dad, Duncan, Matthew and Daniel – couldn’t have done it without you.  Check out our pics:  Engineering photos kgs friends engineering.

I have been determined to live life as before and I so desperately want to be able to go out every day as when I was working, socialise, do what other people do.  But this week it felt like my wretched body let me down physically and mentally – Ehlers Danlos and chronic pain let me down.  I feel so frustrated: that I can’t have arrange a full week; that I felt panicked at the thought of a trip to the London theatre; that in the theatre I had to ask to swap seats as the draught from a fire exit door caused excruciating pain; that as the week progressed the exhaustion became more and more extreme; that by Thursday morning my physio was sticking needles into a shoulder muscle so tight from recurrent dislocations and stress; and that I constantly apologised and the tears flowed nightly.

The race night was a charity event in aid of research for Prada Willi syndrome Prada Willi syndrome.  It was organised by friends whose third baby was born with this metabolic condition for which there is no cure.  The hall was full and our local shops had been very supportive with donations of prizes and sponsoring horses – the support of so many friends and family was quite wonderful.  This little known condition and the research & support given by the charity definitely desrve a shout out.

I hate to move the spotlight back to me, but couldn’t help to notice again at said race night, how people don’t know how to react to the chronically ill.  (No, I’m afraid that is not me – I don’t look that good at any time!) I don’t usually describe myself as “ill”…….I don’t think of myself as “ill”,  and I am acutely aware that “friends” don’t know how to react to my disability now.  We know that others socialise without us now, and who can blame them?  When a 46 year old woman has to have her mum help her in the loo – although they were primary school toilets and very close to the ground – no wonder I needed help to sit down and then get up off the blinking thing again!
I equally know that other people can’t get their heads around the fact that I need so much help now – after all I don’t look sick, until I can’t stand up, have no balance  and my shoulder dislocates.

Yesterday my week finished or rather was finished off by a dog walk in the cold.  I know, I know – I shouldn’t have gone, but it was a beautiful day and I really wanted to get out.  Big mistake.  The cold permeated every part of me from my joints to my back to my foot.  How is it possible for internal titanium to feel cold?  I made it home just, then proceeded to scare hubbie and daughter by passing out and then stopping breathing – although as middle son would now point out in his very loud, deep voice I had to go and start again.  Charming!!

When I started this blog I wasn’t sure where it would take me – a good way to update friends and family after surgery; maybe to be able to offer a glimmer of help to others undergoing scs or experiencing chronic pain; what I hadn’t anticipated was how much I would enjoy writing again, how much I would enjoy & learn from other blogs and that I can vent my frustrations without being lynched by 3 teenagers!!!  Thanks if you are still with me.