I have been a member now for a month and have mainly just been reading and finding out about all of you. Hearing about the struggles/problems and complications kidney disease has brought to your lives and your families lives has made me feel humble because here I was worrying over whether to disclose my personal problems and there you all are being open and honest and trusting! So here goes.
I have had an eating disorder for over 30 years. I don’t call it anorexia because it has evolved, let’s face it if it was anorexia I would have been dead a long time ago, but I learnt how to manage my life with it in it, whether that was disguising it, hiding it, putting on acts and being someone I wasn’t. Mainly leading a double life. It has been with me through 5jobs, two divorces, the birth of my son, the death of a sister, Mum turning from a highly intelligent human being to one struck down with dementia and becoming a child like person and in amongst that lot a 3 month stay in a hospital for eating disorders in ’91 and through all of those traumas it hasn’t budged from my side.
When I learnt I had kidney disease and the disbelief had died I knew deep down it was due to the eating problem, I never told anyone what I thought because I was and am so ashamed, ( that is why I am NOT on the transplant list and never will be, but that is another story for another time). I managed to keep my weight at around 39k for several years and then at the end of 2012 my weight started dropping not drastically but .1 or .2 every week or so. In July or so when it was about 36k Dr Heggarty spoke to me of her concern but I just made out that it was a blip and it would come good again. She gave me a month to turn it around and then action would be taken. I didn’t take her seriously, honestly believing I could carry on as I was, not realising I was actually in a very tight grip of anorexia. I am calling it that now because it was killing me. I was 35k and dropping and I was totally blind to what was happening. I had never been this low in weight and I was oblivious to the harm it was doing, physically I was a wreck, couldn’t walk up stairs, unable to lift or carry anything of any weight, showering was very scary, one slip….everything was an obstacle of some kind, mentally I was in my own cocoon, isn’t this what I had been striving for to lose weight and to become nothing?! I wasn’t going to stop now. Every offer to help I managed to deflect and have another day of anorexic toxicity, dragging me further away from reality.
Steps were taken unbeknown to me mental health were contacted and if it weren’t for my sister allowing me to live with her I would have been sectioned and taken away. That was last September I am now 42kish. I am not happy but I am here. The dialysis has become a nightmare, before it was a doddle because there was never a lot to come off, it was a red letter day if I took 1.5 off! At first as the weight went on I coped as it was below 40k but now it is much more difficult for me to stay calm and not panic and over react by trying to take too much off at dialysis. Subsequently I am wracked by cramps, which is not a new experience for me, but it is during dialysis! My joints are painful, my hands especially, I feel my bones are weakened and fragile. No muscles in my legs, can’t get up to stand on a chair and if I did couldn’t get down! So many obstacles to get over.
It has been a very rocky and difficult path and even though I feel stronger, I am haunted by the pull of anorexia/eating disorder. I realise I have a very long way to go yet getting there is all down to me in the end one meal at a time. I have found someone who is helping me, she is a balm to my panicked mind and I consider myself exceptionally lucky to have her to talk to. My life has been turned upside down since September as have those close to me. The support I have had from my sister and son has been tremendous although I am sure there have been times when she wished she hadn’t stepped in to help and I don’t blame her. After all she has lived with my problem for as long as me. She is no stranger to the eating disorder. My son astonished me with his support and understanding. He was the voice of reason when I found the going difficult. He is amazing . I only spent the first year of his life with him, whenever he was with me I tried so very hard to hide that side from him for so long that when all this came out I didn’t know how he’d react but he has come up trumps and I love him dearly.
Well that’s it, I hope I haven’t bored you all to tears, but as some of you know it is not only the kidney disease that has to be dealt with, other problems complicate our lives and can make living life that much harder.