Posted 23 October 2010 - 09:09 PM
This is how I introduced myself to the forum in May -
since I wrote it I spent 12 weeks in hospital after another emergency admission to hospital - My Cauda Equina not quite finished with me, I have lost some of the limited function I had and suffered damage to the nerves suppling my kidneys, it was good to write it all down then and good to revisit it today. I am moving on, I still think about suicide but I have a lot to be thankful for: this forum and all the brave people who visit it, my family which has now grown with the arrival in Sep of another granddaughter in New Zealand and especially today because for the first time I have looked after my third granddaughter and she is staying the night. Today has been a very good day.
Three years ago I was fit, active and in full time employment, life was being very good to me.
I am married, not for the first time - our combined family has 9 children with 6 still living at home, we have a partly renovated house and three beautiful grand daughters who light up our lives.
My first spinal injury resulted from a surfing accident just about three years ago - I was struck in the back of the neck by a surfer who was surfing in the bathing area. Apart from some spectacular bruising I felt fine after the accident, checked over by a doctor friend who was on holiday with us and just felt a bit stiff and uncomfortable. A few days later I began to get tingling in my R hand - over a period of about two weeks it spread to my whole arm along with terrible pain. It took six weeks for me to be seen at the spinal unit - a scan confirmed that I had a disc pressing on my spinal cord. For reasons I'm still not sure about no operation was offered and I learnt to live with the pain - which has been constant and debilitating. When it got to the point where I could only work and sleep with no energy for my family I gave up work.
This changed my life - and our family finances. I have always been an optimist, my new life gave me precious time with my eldest grand daughter and time to go and visit my daughter and grand daughter number two, in New Zealand just weeks after she was born. At home I spent a lot of time with my dying father iin law - I had a new routine, every day I went to the nursing home and gave Dad his breakfast, read the paper to him and my reward was to see the occasional smile and the infrequent but amazing moments of pure clarity from this lovely man who was being stolen by dimentia.
One day in September last year I hurt my back - doing nothing in particular, the pain was severe and broke through the armoury of medication I was taking for my arm/shoulder pain, my legs went numb, I had a loss of sensation in my saddle area. I rested, phoned the GP and was diagnosed muscle strain and given diazipam over the phone. Days pass in a fog of pain and pins and needles. Eventually a GP comes to the house, I am examined "have you had any incontinence" "no I have the opposite - no urge to empty bladder/bowels, I have to strain to pass urine" , GP sticks pins in me that I don't feel. I need an urgent MRI - a phone call will be made to spinal unit. I am afraid - instinct tells me something bad is happening. No word comes from GP or hospital - I am told an appointment will be sent in the post. It can't be that bad then, can it.
I struggle on I miss days with my father in law - too much pain to move. The consultant asks questions, no examination - "no I have not been incontinent, I have the oppisite blah blah" You will be sent an appointment for an MRI More weeks pass ..................................
The MRI technician is concerned - I am struggling to walk now, I have developed a shuffle, my good arm uses a crutch to support me - my feet hurt so much, I can't lift them up, I have had UTI's that have put me into a high fever, there is pus and blood in the urine that I struggle to pass. I have to wait for another appointment with the consultant. I go to my GP my bowels have stopped working - you are constipated its the pain killers, have laxatives. This becomes my dirty secret, the smearing, the knickers changed several times a day, and the strong perfume to cover up the smell of my rotting bowels.
My father in law has a chest infection - he has stopped smiling, it's time for him to go. For there own reasons the rest of the family won't/can't visit him, so I sit and talk to him. Christmas will be different this year, no cards are sent, the kids make mince pies and decorate a tree and I sit some more. I go back to see the consultant - the questions are repeated "no I'm not incontinent" "you need an urgent operation we will write to you". When the letter comes my husband cries - he will get his wife back at the end of January. On the 18th Dec my father in law is grey - he is going today maybe tomorrow. Family come, my new grand daughter lies asleep in his dying arms - the only cuddle they will ever have. Night falls and the family go away - I lie next to him and comfort him, my husband comes and we wait. In the early hours of the morning he slips away, his suffering ended at last.
Christmas is quiet and I am glad, I do the basics and I cry in pain - and the new year comes and we have a funeral to go to - I shuffle to the grave side and nobody thanks me for all the hand holding, sitting, breakfasts and talking I did. I don't mind it's what I do. My new career is caring for people.
Two days after the funeral - The pain reaches a new level - I stay in bed, the next day I sleep and get up in the evening to make dinner for my family the pain is like hot knives and I can't eat now it takes too much effort. I pass out, I vomit violently and wet myself. At last I can phone the hospital they will operate and take my pain away.
We arrive in the spinal unit after midnight - the registrar who examins me is concerned, he will phone the on call consultant. He comes back and says they need to do an MRI before they can operate, I cry out how long will it take, I think more days of this will be too much. I know I am really in trouble when he says there will be no wait - the radiographer is on his way now. A kind consultant waits for me when i come out of the MRI scanner - we are taking you to theatre now, we will do our best to save the nerves to your bladder - but it's not looking good.
The operation takes six hours - they untangle the delicate nerves from the disk material that is everywhere, I wake up and the pain is gone, I am so grateful. The physiotherapist comes and examines me, they let me rest. The consultant comes and tells me the damage is extensive and I may not make a full recovery - I don't understand.
They physio comes back - and brings an orthotist with her, they explain how they are going to fit splints to my paralysied feet, she asks how long have they been like this. I don't know - I remember the shuffle, how could I not notice that I couldn't lift them or move my toes.
The catheter comes out and I am encouraged to go to the toilet - they scan my bladder after I pee, there is 1.6L of retained urine - they put the catheter back.
The day I am due to go home - I have been shown how to self catheterise, I have splints that help me walk and a wheelchair is on order, there is equipment waiting at home. I can walk a little bit with my one crutch. A consultant is on ward round - she knows me well, she has been caring for my daughter for six years - she has scoliosis and hypermobility. She takes my notes and reads them - she is angry and tells me that I am her patient now, she holds my hands and asks me if anyone has told me I have CAUDA EQUINA SYNDROME, i say no and she tells me I must take advise about my case. I don't understand.
Back at home I use my lap top to look up CES and slowly it dawns on me that this is what I have and it should have been obvious to my GP and the consultant months ago.
I have had a long and difficult recovery - I am exhausted, I wake up and feel stiff and in pain all over my body, I am still suffering from frequent UTI's, night times are a blur of pain and stiffness, my husband has to carefully reposition me, empty my bladder and give me more pain relief.
I now have a diagnosis - Cauda Equina Syndrome, Fibromyalgia, Kidney reflux, an antibiotic resistant infection in my bladder and an Auto Immune Problem which is yet to be given a name.
I am living a life that is not mine yet - I am a prisoner in my bedroom a lot of the time, I have got used to the catheters and am very grateful for the wonderful anal irrigation system. Next week I will see a rehab specialist. I have had NU DRIVE fitted for my wheelchair which makes it possible for me to propel myself with my very weak right arm. I often think about suicide and then feel guilty, I think of my children and my grand daughters and then I cry.
Thank you for reading my story.
Life is not measured by the breaths we take, but by the moments that take our breath away