Page 1 of 1

Looking back Being a renal patient

Posted: Fri Dec 14, 2007 8:52 pm
by eliznew412
I have finished my CBT sessions at the renal unit but still do an update of the worksheet from time to time and it has become more of diary which I only fill in when I want to rather than need to. Filling it in tonight has helped me to realise how far I have come breaking out of isolation - also how vulnerable I was to the influence of doctors whilst I was a young child, adolescent and adult. I still get my 'deep' moments but don't seem to get the terrible panic times:

'It is remarkable that I don't panic anymore. Maybe I'm fatalistic and its just that expectations of me from family, any church contacts and even doctors is not as great as when I was young. Sometimes I do get negative and of course very concerned. There is a lot of practical housework to do as soon as I get home. I don't particularly like being busy all the time with no time to think and its not always healthy. There is a danger that in dealing with these slightly negative episodes by kind of withdrawing inside myself in the snippets of time I do have to think and getting deep in prayer that I appear to be incredibly resiliant. The reality is though that I'm just an ordinary human being. I'm a bit concerned that there is no-one | currently really talk to having become more distant from my sisters over time and they take little initiative in reaching out to me. I can be a bit niave about people and even about myself sometimes. There is still the pressure to keep myself to myself and only tell people the good news stuff going on - not the bad. I do hope that medics won't now treat me as though they've 'bagged' the Christmas turkey ie got me signed up for treatment and I don't have to human anymore. I don't think my current consultant is like that but God only help the 'systems' that we are all prone to follow. Was that a balanced thought? - I don't know. I think I'll return to these enteries a bit nearer Christmas! - & update this if I feel like it and am able to!

Whatever I go through at work or home inevitably I start thinking about impending treatment and weighing up if its worth it, what I'm worried/ concerned about. (Contary to my GP's concern and perhaps foollishly I don't think about the technical side of actual dialysis - just how I'll cope with housework, job & whether I'll be bullied or not) This is however a vast improvement on the automatic terror and assumptions about being stereotyped and bullied again by doctors. I hardly, even to this day dare remember Dr xxxx's (the Christian GP who frightened me) instensity and spiritual influence - to the point of bullying and his utterly stereotyped view of me. I am sure that God is very forgiving if I'm not but the most important thing is that attitudes shift. I do get small doses of stereotyping even now but at least I can stand up for myself a bit - and the reward for that is being stereotyped as a bit of a 'character' and premaddona! I'd love to resign from this particular weird unpaid job in my life - being a renal patient. I feel I'm getting a bit weary of it all. What a ridiculous faith Christianity is - fancy actually being daft enough to believe the harder I am pressed the greater the faith or at least the more easy it is to go into Jesus again. Sorry if that makes other people quiver at what a deep intense nutter I can be or 'pathetic' sweety I must sound but I've been very pushed round in the past and 'dipping' back into Jesus in my mind is something I do remember at times as well as the dreadful pressures and loneliness. I have no idea why us humans ever feel the need to 'test' each other out - yep I do it to others too. There is so much sinicism, questioning & testing that we end up bullying each other in just about every sphere of life except when going shopping and even then God help us in the January sales! At least I won't be in those - being skint!'

The background to the above is a bit complex but suffice it to say a Christian GP used to go to same church as I did and he was a Church elder there. I was young and a bit naive and had asked for a minitry of healing. I couldn't understand their stiff attitude that I 'wasn't ill enough' and also weirdly that if I had such a ministry then my then husband (who was quite abusive would also have to have a healing minstry. I'd so much wanted people to get alongside me and thats what I felt I would get with a ministry of healing. Instead they denied this to me, prinicapally because the Christian GP and Church elder was my doctor and he was unsupportive of my request. So not only had he persuaded me to keep a risk pregnancy but he had denied my the warmth of support of my own church - shocking.

I only relate snippets of my distress just to let folks know that such things happen and that if any churchgoers read this they may better understand the imporatance of not making people feel judged and just how wrong 'elders' or 'inistutions' of any sort can get things.

I am truly greatful though that I don't seem to get the nightmares of these memories of past abuse of the ex and apparent collusion from church people and doctors. It was no wonder I broke down.

As I told my current GP I can only thank God for having had a reasonable gentle, loving upbringing even if some fundmenatlists reckoned they weren't 'saved'. Sometimes the memory of their love was the only thing that reminded me of what love was. 'Good enough' family life ie not tooo..good and aspirational/ just loving is greatly underestimated and undervalued. Yet I still felt terrible tensions and isolation as an adolescent. Such are the stresses on having being diagnosed as child and being a 'lifer' as a renal patient. There is such a need for gentle support well at a less formal level than requiring a psychologist but a need for non-threatening paramedical people for renal patients to talk to - particular the 'lifers'.
I have been in touch with our local KPA - haven't heard anything - but this 'old bat' won't give up re emotional spiritual support/ or group in our renal unit - as long as I'm breathing!