This morning, I was given permission to write my story...

It all started yesterday, I visited Viv at hensteeth, she had written a post about her condition, it touched a 'nerve' with me...  I left a short message to say that I understood and sent her my love.  This morning I have have opened my emails to find this short reply..

Hello Julie

Thanks so much for your comment.

Have you a similar condition then?  If you have. isn't it the pits?

Every day and particularly night... is a struggle.

If you fancy having a mutual moan :- please write.

Thanks again.

Viv x... 

Little did she know what she had let herself in for....


And as I said to Viv... Brace yourselves and make a pot of tea....... Here is my letter...

Hi Viv

Mutual moan.......

Here goes.... Brace yourself...... A pot of tea is required....

Three and a half years ago I had an operation on the right side of my neck to remove a lump fearing the worst and hoping that it was benign, which it was.  My problem is that the surgeon doing the operation accidentally cut through the spinal accessory nerve which let to my right arm not working, numbness behind my right ear and neck (I'm right handed), and in constant pain ever since.

Despite a repair to the nerve which has helped with movement but now as well as my neck numb, my right arm from under the arm where the Ulna nerve was taken for the repair, to the tip of my third and little fingers are also numb.  The pain in my neck and shoulder was relieved slightly and I have movement, but it is still relentless.

Sorry if I'm going on and on but it is so good to get this off my chest.

As you know that the pain killers that the doctors prescribe for nerve pain are anti-depressants, which left me a quivering wreck. suffering from panic attacks and walking around as if I was in a bubble while the world continued around me.  I was very frightened... Not good.  Others gave me heart palpitations, and a very sore stomach... It continued as I worked my way through the usual Amatriptyline, Dicloflex, Pregabalin and others.... to no avail.  So for a long time now I've relied on Ibuprofen and paracetamol, which I take in copious amounts which can't be good in the greater scheme of things.

The nights are the worst as I understand they are a problem for you too.  I wake constantly, walk the floors, read, watch awful early morning TV and listen to late night/early morning radio to distract my brain from the pain, I eventually give in and take more tablets... It drives me nuts.....!!!!!!

The exhaustion is beyond words, I walk around in a daze most days, my memory is rubbish and have to rely on lists, and if I loose or misplace one of them.. I'm sunk!

Simple tasks take forever, the ironing takes several attempts, the iron being heavy and the movements used cause great pain.  Hoovering, the same problems, cleaning the bath, unless Norman does it, (My darling husband) it's not good!  And takes forever, because I have to stop after a few seconds, then a break of sometimes an hour or more for the pain to subside, then try and attack it again... And it goes on, to clean the bathroom sometimes it can take all day... And shopping, another problem.  Someone suggested that we get it delivered.  The delivery charges from supermarkets are so expensive and without my wages, money is tighter than ever, look after the pennies and as my mum used to say, the recession hasn't helped the situation has it? Everything is getting so expensive, food is ridiculous, and petrol !!! I'm sure you understand all of this...

An how I miss work, after our beloved daughter Samantha was killed in a road accident work was my saviour, it saved me from going down a very, very deep dark hole.  The camaraderie and the conversation were a form of therapy for me.  When I hear people moaning about their jobs, I feel so sad and sorry, which is most unlike me.  My cup is definitely a cup half full... Thank goodness!

Norman has been a star, patient beyond the call of duty, never once getting cross, never moaning that he hasn't had a good nights sleep, never once suggesting that I go and sleep on the sofa.... Always there, when the pasta needs draining or the sheets need changing... Visits to the hospital etc, driving 99% of the time (I can only manage to drive short distances), he is truly my rock, my star.  Without him I'd be sunk.  What can I say about him, it brings tears to my eyes just writing this down.  I love him so much.  Without Norman, my wonderful supportive children and my friends, who knows?

There is some good news........

I have a wonderful acupuncturist who helps control my pain which gives me some relief, for which I am grateful.  This afternoon I shall be having several needles stuck in my neck and back, which in turn will be connected to an electrical appliance.  Oh, what joy!  It might be an area that you could look into it's worth a try, if you are like me you will try anything.  There have been times when I have wished that my right arm could be removed. which I know is daft, but pain does cause you to have these strange thoughts.

Another area that I have looked into which has helped is mind control, which again might seem far fetched to some.  For me , I use a distraction technique, like when a child is having a tantrum.  I try and force myself to carefully focus on something else, distracting myself from the pain that takes over.  It could be anything, the nearest thing, for instance, focus on a fir cone looking very carefully how it is constructed, all of the little sections, and the amazing spiral that nature has created....  It truly helps.  Another way is to sit quietly and concentrate on your breathing, concentrating and listening to every breath,  And thank goodness for my walking boots.. An excellent investment, I walk miles on bad days.

My art work has been a saviour, I can focus for short amounts of time, with Radio 2 or 4 to accompany me, I'm surprised at what I have achieved.  And the studio that Norman has built me... What can I say... Words are now failing me... I can hear you say in thank goodness for that.. He! he!

I am afraid that by now you will need a very large stiff drink, tea will not hit the mark, so bored with my rantings.  I thank you for this opportunity to write it all down. it's as if I needed permission to write... It's the very first time that I've written it down...

Thank you so much Viv, it has truly helped.

Sending my best wishes ~ Julie



Poor Viv,  and you my poor blogging friends, I appologise for this but it has helped, and I thank you for taking the time to read it even if you need a dark room and a large glass of wine to recover....  I shall tell you about my wonderful holiday and the inspirational artist that I met next time... x