Frustration

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.

images (13)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.

69070b88927cda934d5414958bc8427bI 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 theimages (15) 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 images (14)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.

 

 

 

You shoot me down, I won’t fall, I am titanium

images (3)At the moment my downfall seems to be my titanium.  Along with storms Abigail and Barney – who names these storms??  Isn’t Barney a big, purple dinosaur?  Every time that we have a storm, particularly wi
th high winds, a couple of things happen in our house.  The  first is that our crazy mutt stalks the house panting and it is the only time that he won’t  stay in the kitchen at night.  Thunder and lightening or fireworks – he’ll just go into the garden and have a really good bark and then settle down; but when the weather is windy he becomes so upset and agitated, that I have wondered if he experiences some sort of pain.  Do the changes in air pressure cause him a problem with his inner ears in the same way that an aircraft can for us?

The other thing that happens when the weather changes is that the pain in my lower back increases.  It is more than just a drop in the temperature increasing nerve pain.  I feel a growing pressure and coldness in the spine along the whole length of the fusion and nothing will ease it.  Officially I don’t believe that there is any research or medical evidence to explain or corroborate this, but just reading other experiences online makes me think that it can’t be coincidence that so many with metal implants experience these sensations.  I do have one friend who had a titanium plate put into her thigh at The National Orthopaedic Hospital at Stanmore and she was told by her surgeon that changes in air pressure can cause changes in the titanium.  Please don’t get me wrong, titanium has led  to some fantastic breakthroughs in surgery as it is a substance that causes very little reaction when implanted in the human body.  My own experience as a nurse was mainly in the use of osseo integrated implants for facial reconstruction – that is titanium studs anchored into the bones onto which false ears or noses, for example, were attached.  These were a true game changer in the treatment and enhancement of life quality for those undergoing major surgery for head & neck cancers.  The beauty of the titanium is that the bone actually grows into the metal – hence “osseo integrated” – and gives a solid base for prostheses.

When I had my first fusion I was told that the aim was for the pedicle screws to integrate with the spine, the rods to hold it all in place and eventually the bones would fuse with the help of a bone graft.  Unfortunately the bone graft did not take and the metalwork was not in the correct position- hence the need for a revision.  For me I believe that the fusion has increased my mobility problems, aggravated my hypermobile spine and left me more disabled – yes, I do regret having the second op and would urge anyone to think very carefully before undergoing surgery.  But sometimes it really isn’t that easy being in the patient’s seat – particularly when you feel desperate & it can seem like there aren’t many routes open to you.  I felt that my surgeon was only going to refer me for scs assessment after all surgical routes had been explored – so leaving me with no option but to undergo another fusion as a means to an end.  Whilst there should be an honest and open dialogue between patient and medic, it is still a case of our lives in their hands.

Back to David Guetta’s lyrics – but this time I can use them to describe me and my pain.  I am titanium as I battle constant pain:

Pain, “You shout it out,
But I can’t hear a word you say
I’m talking loud, not saying much
I’m criticized but all your bullets ricochet
You shoot me down, but I get up
I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium

images (4)
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
I am titanium”

24 years, 7 ops – but I won’t fall!