Thursday, 28 April 2011

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


  1. Oh mercy Julie, I'm sorry that happened to you. I'll pray that the acupuncture works. If you don't mind sharing - what type of anti-depressant(s) did your doctor put you on? I have fibromyalgia and my new doctor wants to put me on Prozac which is a serotonin inhibitor. He has done a very good job of explaining just how it works for those with fibromyalgia but I'm kind of leary of taking it. I do have some confidence in him though because by just switching my migraine preventative medication from one blood pressure medicine to another, I haven't had a migraine in two months which is very rare for me. I'm just not much of a pill person and prefer to handle pain without them. Just wondered if the anti-depressant you took did anything for your pain? Good thoughts and prayers to you and big hugs!

  2. I am so sorry you have to cope with this - it sounds terrible, draining and debilitating as well as so horribly painful.

    I too have a health problem I 'work through' as Viv puts it - ME. Most of the time I remain positive and determined, but there are times when I rail against it and the limitations it imposes.

    Your post is far from self indulgent and I see no need for you to apologise for it - on the contrary, knowing what you are going through makes my respect for you increase!

  3. Wow Julie, I had no idea. It makes me want to slap myself for my petty complaints and so thankful that I do not suffer from pain. I love that you go on living your life in spite of the strength that requires. I'm sending a winged prayer off for you this morning...Thank-you for sharing

  4. Dearest Julie,

    I'm so sorry to hear about your daughter and all the pain(emotionally and physically) you have had to endure through the years.
    Telling your story helps with the healing (emotionally) and I will be praying for you for continued success with acupuncture.
    There is something to be said about alternative medicine!
    With all that you have had to endure, your art work is amazing!
    As for Norman, he sounds like one in a million!
    Thank you for sharing your story.

  5. Had to read this all through although you were so kind and informed me before. It is not a burden to know, rather a sign of your confidence to share what you're going through. I'm glad to read that you discovered one of the methods that have helped me tremendously. I send all my good wishes your way.

  6. Julie
    thank you for your reply...
    Please, please do not imply any negative reation to your words. Your life to me, is humbling and puts all my worries and woe very much into context. You are a brave and fantastic lady and I look forward very much to our future friendship.

  7. Dear Julie

    I ran over here from Viv's site, I'm amazed by your incredible attitude, your perserverance and talent. I thought i was going through a difficult time, but you have , with your honesty, made me feel centered. Better.

  8. I read Viv's blog and her blog brought me to you. I am so sorry for all you are going through. I think that it is good that you can "spill your guts and heart" there are those of us that will listen and will keep you in our thoughts. I think that you are brave and you are an inspiration. thank you for sharing and being honest.

  9. My dear you have certainly been dealt more pain and suffering than most of us could bear.
    That you have stayed positive and still remain creative amid the chaos is a true testament to your strong character.
    I hope the acupuncture will continue to bring some relief and that you find peace in the little characters we all enjoy...
    My deepest condolences to the loss of your beloved daughter.
    Sincerely, Susan

  10. Julie, I am so touched by your personal story. It puts my petty complaints into perspective. You are so strong to push through your pain and continue to create such wonders. I don't know about chronic pain but I have a friend who lost feeling in his right arm and it withered on him (he was driving cross country, and that's a long distance in the U.S. - he rested his arm on the window ledge and it went numb). He took up a sport that meant his right arm took a lot of jolts (holding a shield in sword battles) and he actually regained all feeling in his arm over time. It is now just fine. He attributes it to nerve regeneration, due to the continual jolts. I haven't the slightest idea how you might translate this to a real life experience, but it might be worth a thought. I'm a big believer in alternative measures. Good luck!

  11. Dear Julie, you are not a moaner, far from it!! In my view you suffer all your pain and sorrow with much dignity and a lot of stiff upper lip.

    Any way I am hoping the girls from Contemporary craft got in touch with you? I do not have your phone, they are coming over on Thursday if you want me to zip over and pick you up, so you can play with my art stuff too let me know.

    Big hug Joan

  12. Well now I have two women who I feel the greatest admiration for. I am very fortunate to be a friend of Viv's and despite her ongoing suffering she never gives a hint of what she is going through when we meet. Always a smile.. and I can imagine you have the same grace and dignity. I am so sorry to here of the dreadful misfortunes you have been dealt in life.. If this is any consolation, you have made others aware of the trivia in life that we all moan about and put it firmly into perspective. I do hope you find some peace from your pain.
    Michele x

  13. Julie

    thank you for making contact through linkedin

    I am enjoying reading your blog and truly appreciate how you feel with regard to living with disability and constant pain as this is also my own predicament. I dont mention it too often on my blog because I would just get people down having to read about such things and well I might even get myself down too. Like you if it was not for making my artwork - my life would be utterly miserable.

    Hope you feel a little better now although I do appreciate that its not the sort of health condition from which one is able to "recover".

    Take care



Welcome to one and all, please feel free to leave a few words..

I am always pleased to read what you have to say and will always try to answer any questions you have to ask. ~ Julie