So Christmas is now a distant memory and I can’t say I’m sorry.
January is half way through and how’s it been ? Well still very up and down which I suppose is normal for me but something I find hard to accept and adapt to. Good days give me a reminder of how life used to be but it never lasts and leaves me feeling very sad. When I was first diagnosed with bowel disease 32 years ago, it was hell and I was ill all the time. I was on loads of medication plus steroids and it was a real struggle especially with a 2 year old to look after. But I seemed to cope better then than I do now despite the good days I now have. I think it’s because of the circumstances as to how I became ‘ill’ again, a routine op going wrong and leaving me with more problems than I ever envisaged. Plus of course I’m older and, like most of us, picked up quite a few knocks on this bumpy ride called life.
For new readers I have an enterocutaneous fistula. This means there is a connection between my bowel (entero) and my skin (cutaneous), also known as a catastrophic complication of surgery. In simple terms it is a right royal pain in the you know what. I have three small holes on my midline incision and have to wear a bag . This is of course in addition to my stoma bag which by the way is a joy compared the Devil Incarnate Fearsome Fistula. The fistula is high maintenance as the bags are prone to leakage. The fistula holes are in an awkward place and are recessed so just seep liquid which leaks through the sides of the bags. I’m in contact with all the stoma companies and they are great, very supportive. But it’s all trial and error and my postman is kept busy delivering endless bags and products, none of which have been that successful in all honesty. It does get me down and reduced me to tears when I have spent ages carefully applying the bag plus products only to kind it’s leaked a few hours later. Plus of course it’s not just the leaks, I could just about live with that. It’s the uncertainty of it, how I can be fine one day and in hospital the rest, how I’m dependant on painkillers now to get through the days. But this is how it is and I don’t have much choice, I just have to deal with it.
One of my fellow bloggers mentioned ‘stuckness’ and oh how I can relate to that. I’m completely lacking in motivation to change anything as there are a few things I could do to make life better for example lose weight as apart from the obvious health benefits, maybe the bags would stick better on a slimmer abdomen. Plus exercise as I do very little bordering on none. Both of these goals are essential for me really as I’m so unfit at the moment and even if I don’t have any more surgery, the fitter my body is the better I fight the constant pressure a fistula puts on my body. But again it’s hard to step out of my comfort zone, my retreat where I feel safe and cosy despite a rather turbulent relationship with my husband. He is fit and well and very very bored but that’s already been said. My life is busy enough for me, with us having our little granddaughter 2 afternoons a week, plus all the usual household chores. Not a very exciting life but I’ve had enough excitement for one lifetime, I now want quiet but he doesn’t , well not all the time. If I recovered or at least had some stability, I think I would higher the bar a bit and become more adventurous but for now, I need a simple quiet life. So we compromise and sometimes do separate things which is not normal for us but is working out ok 👍👍 I think we all need our own space occasionally . I have suggested a Man Shed but he hasn’t taken much interest 😫 maybe it was because of the suggested location – the moon ………😊
Tomorrow is doctor day. I see my GP in the afternoon for my blood test results then make the trek to Cardiff to see my consultant. Not sure what I will say to him as I know as long as I am –
Not losing weight
I’m stuck with it. As he knows and I know surgery is NOT the answer, especially not yet, there is no answer it seems. He can’t give me medication as there is no obvious underlying disease. Even though I feel as if I’m fighting a constant low level infection, my white blood count is ok so seemingly my body is fighting it. What frustrates me is you’d think seeing as he is a Professor, he would want to find out what has caused this yet he doesn’t seem to be looking very deeply. Of course that is probably a highly inaccurate assumption as I have no idea what research he has done into my case. Unfortunately owing to my ‘high anxiety’, he doesn’t tell me everything which is not always helpful. I need to impress upon him that a) I am only highly anxious because of what happened and the fact I have this demon within me & b) if he doesn’t tell me, I ask Dr Google which usually results in even more anxiety as Dr Google inevitably predicts certain death within the next 3 weeks. Sometimes it is far better to be ignorant and not have the personality that digs deeper than is recommended but I am what I am. On saying that without my Consultant, I don’t think I would have survived this far, he grounds me and puts things into perspective. He is very calming – the only time I saw fear and slight panic in his eyes was when I was in ICU with lungs that had failed, but that is understandable.
Once tomorrow is over, we are celebrating our beautiful granddaughters birthday on Friday and again on Saturday when I am one of the Nana bears in the Teddy Bears Tea Party. So on that note I will finish as I need to be somewhere else doing all things party related.
Easy for Audrey Hepburn who was beautiful and talented but I know what she means,. I’m ok, I’m kind and I do my best which is good enough for me , for now 💕