[bonney]

It's been just over 18 months since op T2-5 spinal AVM- did not fully comprehend all that was happening - after experiencing massive chest pains, head pain and almost instant paralysis -rushed to hospital- diagnosis came within a few hours - really did think my number was up. Anyway 10 days of tests etc prep for op - what chance, can't recall now but given the choice between paraplegia and the chance of walking again took the latter. Day after op early morning visit by team of doctors . Q? could I move my big toe? predictably my mind wandered to all medical series I'd seen and here it was happening to me. All my mighty effort and YES that big toe moved ever so slightly! 12 more days in hosp then home - wheelchair bound - catheter tubes and all -moving around like a sloth dragging my right leg like a great lump - dull mind - angry- frustrated and all the rest. 15 months of physio - managed to relieve myself of the catherer after 4 months - though bladder/bowel situation not perfect certainly manageable.
Found friends help forthcoming in the first 6 months or so then petered off - now never see anyone - I guess they all got tired of helping - miss the intellectual exchange mostly- My 26 yo daughter is my carer - and though she's been great in last few months its obviously taxing on her emotionally. I do pretty much everything - housework - cooking - laundry- need help with pushing shopping trolley and find it extremely tiring if I have to go out anywhere - so tend to stay home. Thank G for the internet. My health condition has caused me to become alienated - seperated weird? I rarely mention it - and anyone asking why I limp and look in obvious pain I just say its a birth defect - found it pointless trying to explain - the glazed over look people give is enough to stymie conversation.
Can't abide self pity - though it may not seem like that given what I've said - but feel comfortable enough to share it among fellow sufferers of this condition.
My greatest difficulty is in dealing with the pain - never one for pills or the like -have to resort to pain killers just to get through the day- do take myself off them for short periods a week or so - but it gets to the point where I need a break from the relentless 'heaviness' of my body. Does anyone else experience this?
Specifically weakness of my left leg - can walk -have to laugh at myself when reminded of John Cleese the english comedian who did a skit of 'silly walk' well that's me. I take the dog out for a walk - at least this forces me out of the house and the exercise - and fortunately she likes to stop and sniff frequently so as a pair we do OK. It's the middle bit (abdomen) that's stiff and seems to have a life of its own - and my shoulders, arms loss of strength - surgery related to a degree - and the top centre spine and muscles around that are a veritable pain in the back - plus referred occassional pain in my left elbow and right sciatic nerve-
Now I've got all that off my chest - I keep myself as active as possible - truly I hope I haven't lost too many brain particles reasonably high IQ 120 or so. Was in the final stages of a masters degree with the view to PhD when AVM made itself known - don't feel I'll ever be able to complete what I had hoped for - anyway in the meantime have written 2 books, published one and hope to find a publisher for the other one day. Both non fiction about child welfare institutions in Australia - Forgotten Australians and Child Migrants- a disgraceful history in this country and one which I experienced first hand.
Would like to hear whether anyone else has problems with pain and how they manage- everything on the net concentrates on the medical side of things not on how to manage afterwards.
Thanks Steve for putting up the site and for sharing your story - knowing that you're not alone does matter.