I wrote this at half one this morning and wasn’t sure if my ramblings should be published, but here goes……

The months between the residential course and the phone call with a date for the current stimulator trial have felt pregnant with emotions.  These have ranged from optimism to fear, caution to hope, an overwhelming, crippling realisation that this procedure will determine how I am able to live my life.  Then there are the hopes and expectations of others, all only wishing for the best for me, but some feeling impossibly high, maybe even untenable.  Failure does not feel like an option, but is a very real possible outcome and one that I have to face head on.  The pressure for a good outcome feels enormous and I am terrified of letting everyone down.

My physical condition has continued to deteriorate and I found recovery after the last surgery hard.  I had been determined after the first fusion that I would not have another operation, but then I felt pressurised into having a revision before anything else would be considered.  There comes a point where the patient with any chronic condition has a better comprehension of their own body than the medics around them.  I have always been very supple, or bendy as Dad would say, double jointed is another popular name used, but was only given a formal diagnosis a couple of years ago – probably because there was no formal diagnosis when I was a child.  Ehlers Danlos syndrome is a genetic condition which affects the connective tissues within the body, from loose joints & dislocations to detached retinas to more complex issues of the cardiac connective tissues.  So it was with some alarm that I listened to the specialist consultant at University College, London tell me that someone with my condition should not be having a fusion of any joints.  The rationale made perfect sense – a fusion of the vertebrae would serve only to destabilise the joints to either side as they became yet more mobile in an attempt to compensate for the site of the fusion.  The issue for me was that I had already been fused!

Then there was the occasion after the most recent extended fusion, when a physio declared that “we really needed to get some movement back into the bottom of my spine”, and that “this isn’t actually  nerve pain”. Excuse me?  Wasn’t the idea to prevent the spine from moving, hence the screws and concrete filler; as for a definition of nerve pain, I will take the consultant’s view of a damaged nerve root in combination with the feelings experienced in my body as the definitive.

I have suffered an increasing number of falls due to my leg caving in beneath me on top of an existing foot drop. Two stand out in recent weeks, the first of which occurred when my husband and the boys were away, leaving me home alone with my daughter. I had just gathered the washing in from the line on an August Saturday evening when, whoosh! Over I went straight down onto my coccyx on the concrete patio. The dog came pelting down the garden, I didn’t know that he could run that fast, and my daughter came running out.  She couldn’t get me up and ran along the road to fetch my friend and her 19 year old son, who duly arrived back uncertain what to expect.  At this moment the tears came and I felt I couldn’t go on –  my friend told me the next day that it was at this moment that the realization of the enormity of the situation hit her: just how much this was affecting me, both physically and emotionally.

The second big fall came the weekend prior to my hospital admission.  We had arrived at a hotel in Bournemouth for a weekend with family & friends and a dinner dance on the Saturday night.  The journey was a typical Friday evening – roadworks, heavy traffic etc etc, and despite our regular stops en route, by the time we drove into the car park I could no longer feel my leg or foot.  Diners in the hotel restaurant were treated to an almighty yell, to accompany their steaks and wine, as my leg failed me and, as if in slow motion, I toppled over and landed full length on my right side on the hard ground.  My brother was watching from the first floor and said that the scene had resembled something out of a Monty Python sketch, because my daughter ( 5 inches shorter than me)had been helping me but as I went over, she was too light to anchor me down – and instead her legs shot up into the air and she looked for all the world as if she had jumped me!! I couldn’t move for pain and  shock – talk about wanting the ground to swallow me.  Things were to go from bad to worse as  I discovered that I hadn’t picked up enough medication for the weekend and I began to feel slightly panicky.

So began my worst night – Duncan’s also!  Obviously I had really hurt myself from the fall, but just didn’t want a fuss.  But my leg pain was already going in overdrive during our meal and by the time that we went up to our room, I was feeling quite stressed.  When this pain takes grip there is nothing that will relieve it.  There have been nights like this in the past – I pace, I watch an amazing amount of rubbish TV on the ipad, I drink tea and at home I talk to the dog.  But this night was different and by 2.30am the only feeling that was completely engulfing me was an inability to carry on.  The pain and related irritation in my leg was at a level that I could no longer cope with, and once the tears started I could not control the sobs wracking through my body with almighty gasps. I’m not sure that anyone other than my fellow chronic pain sufferers will be able to have a grasp on the desperation I felt.  If my leg could have been removed I would have used a hacksaw myself; in those quiet hours of the early morning it is very easy to question oneself, and I can honestly say that I made a decision that night that I can’t live another 40 years like this.  Duncan made a more immediate decision and so it was at 2.45 am that the hotel porter was letting a deranged sobbing woman dressed in a nightie and leggings out into the pre-dawn morning.  The actual drive home was easy, but became busier as we approached the M 25 (what are all those people doing at 4 am??).  However we learnt the meaning of climbing the walls that night, as I experienced the worst car journey of my life  and was literally hanging onto the ceiling fabric from my nails.  I felt like I had gone completely mad.

Duncan did settle me eventually, and the funny side to the tale was that our eldest didn’t even realize we had arrived home until I walked into his room at 10 am that morning!  “I thought you went to Bournemouth!!”  This really fills us with confidence for future trips away……. We even managed to drive back for the dinner…..and Sunday was a beautiful day.

But take it from me that there is an unseen, unheard army of pain sufferers living out there.