Update & thanks

Hey folks, hope you’re all happy & well. Sorry to begin on a negative note. I won’t sugar coat, the past couple of weeks for me have been pretty shitty. In that time I’ve seen a urology nurse specialist, a continence nurse specialist, a urology consultant, I’ve chased GPs on the telephone, attended a pre-op and on Friday I had surgery under general anaesthetic. So todays message will be brief as I’m not feeling entirely human right now. No photos either I’m afraid as I currently look like the Crypt Keeper, and trust me no one wants to see that!

It has also been a sad time due to a family bereavement; two days before my birthday a girl of only 15 died from neurofibromatosis type 1. This is a very rare and little known condition. My knowledge of it is limited and so I refer you to this website if you wish to learn more.

Furthermore, two days after my birthday is the anniversary of my Nans death. So all things considered, sadly I have not yet felt inclined to enter into the festive spirit. But I will now make the effort to try. Mom (yes, I say Mom rather than Mum. The latter seems too… posh?!) has already decorated our home both inside and out with lights and wreaths. Yesterday she and Dad put the tree up, a real one as always. You can’t beat a real tree!

To end more positively, Id like 2 say thankyou for the overwhelming response to my last post My life with Ullrich congenital muscular dystrophy. I hoped, but honestly never expected anyone to read it let alone relate to it. The feedback I have received, particularly on Facebook has been so kind and supportive. Your response has given me the much needed confidence to continue blogging. So I thank you all, sincerely.

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