Making a little sense of my personal chaos

This blog is subtitled ‘A place to get my thoughts together’, and I haven’t used it as such for a while….maybe that’s why I have seemingly dozens of fragmented and unrelated ideas whizzing around in my brain, with not a coherent thought among them. I thought this meant it was time for a little writing therapy.

Self Frustration

I’m feeling pretty fed up that my New Year’s resolutions (damn, knew I shouldn’t have put them in black and white) are barely any nearer to completion, and May is approaching. I still have the car….I should have sold it over a year ago. The trouble is, it is always on the medium rather than the high priority list. Same with all my lofty ambitions to raise money for CLDF…they never make it onto the “bad shit will happen soon if you don’t do this now” list, which is the only one things ever get done from. Every time I think I am going to have a few days to breathe and to sort some of the backlog out, something scuppers my plans.

Oh, I so want to be an organised person! I have read and been given lots of tips and sound advice…but the one of the things none of them ever say is when I am supposed to find time to set it all up. Or how you get quickly back on an even keel after disruption to your routine, or how to be flexible enough that unplanned events do not upset it too much. I think I need one of these life coaching gurus or something….somebody help me!

Really, the trouble with me is that I want instant results. My organisation is much better than it was a year ago, but slow steps irritate me. I keep on wanting to wake up tomorrow and be instantly transformed into super mum. Silly I know. I shall continue doing what I am doing, which is getting up each day and doing my best, and trying to remember to count my many blessings.

Liver Disease

I have lots of our liver disease friends in my thoughts and prayers at the moment. Several children from Liver Families are acutely unwell at the moment. One has just received a new liver, and the family are anxiously waiting for their little one to stabilise. Another has anaphylactic reactions to … nothing. Another is having breathing problems, and needed to be resuscitated during a simple procedure.

Here in the UK, an adult BA patient who was transplanted a few years ago is very ill, and needs a second transplant urgently. I am also thinking of my dear friend Elly and her beautiful son Arthur, who has an endoscopy this week.

I won’t go on and on, but there are others too. Sometimes the difficult aspect of mutual support is that I am reminded of just how hard things could be for us in the future, and how suddenly your life can change in the world of liver disease. But it also makes me appreciate every day that Hannah is stable and healthy – and of course Caitlin too. I also appreciate the fact that here in the UK we have free access to good quality medical care.

I would never want to be without my ‘liver disease’ friends, who are some of the most incredible people I have ever encountered. They have given me knowledge, support, friendship and much, much more. The fact that I know they will be there for me if the road gets rockier for Hannah is an amazing comfort. I pray for strength and peace for them all and healing for their children.

Nervous

Our six months in liver disease limbo since last bloods and local clinic visit are almost at an end, and the next couple of months will give a slightly more accurate picture of how Hannah is progressing. I can see a healthy and happy child, but I am aware that appearances can be deceptive, and the paranoia is starting to rise.

Next week Hannah will have bloods, so that is the first thing for me to worry about. I can see she obviously isn’t jaundiced, but the others could be pretty much anything. I just hope they are stable and still normal! The local clinic visit is the following week, and then I will find out if her liver is more enlarged as I suspect, and whether that has any short term implications, and also if her spleen has become enlarged at all. More nerves there.

In July (I believe, although the appointment has not come through yet) we go over to Birmingham for the first time in a year. I think (!) that Hannah will be having an ultrasound and also the bile acid test then, and we will have a clinic appointment too. The ultrasound will tell us whether she has portal hypertension, so finally I confront my biggest fear head on for the first time.

In the meantime I am appreciating my blissful ignorance, and hoping that these are to be Hannah’s only encounters with hospital personnel in the near future.

I am also concerned about Caitlin and her recurrent constipation, and the lack of explanation for it. I have requested investigation by a paediatrician, as the GPs can’t do a whole lot except prescribe lactulose and senna, but four weeks later I am still awaiting even a letter to tell me when the appointment is. All I can do is try my best to keep her comfortable.

Resolution

More later. That helped.