My mood has not been helped by seeing the latest definitions for the disease that is making my life such a hell. It is officially called Chronic Kidney Disease, but on the table I have seen this morning the stage I am currently at is now seen as the Disease WILL progress. Plus it is now classed as End Stage Kidney Disease. This has hit me hard as I was not aware that my future was so defined already. I guess in the back of my mind I was hoping that one day I would wake up with more energy and a pair of kidneys that are behaving themselves and working in the way they were designed to...But that is never going to happen. I have to get my head round the idea that my immediate future is full of spending 3 days a week at William Harvey in order to stay alive. That is a decidedly depressing thought and not one I can think my way out of, whatever my family think or feel. If I could tell myself that my kidneys now work I really would. This constantly feeling run down and out of energy is horrible and there are very few people I would wish it upon.
The hardest thing about this is that I look absolutely fine whilst feeling dead on my feet...so on my really bad days I feel guilty that I can't do things - but if I try the following day (or more) I will be able to do even less; so I really do need to keep a close eye on how many spoons I have available each day and admit to myself that when I run out, that is it. I am not able to do/produce more.
I am also keeping a close eye on all the research into Mitochondrial DNA links to kidney disease. Which is one reason why Mikey's eating habits really worry me. His intake of salt is really not healthy and the lack of vegetables is crazy. I wish I could convince him; but it is really a matter of smashing my head against an immovable object. All that happens is that I end up with in hell of a stress headache.
This photo was taken on the "Wash Your Hands Round Britain Cruise" It is one of the few photos of me/the 2 or us, that I actually like. We really must get some more up to date photos done at some point including Mikey!!