Weekly roundup

It’s been another stupidly busy week.  I keep waiting for things to calm down a bit but it just doesn’t happen.  Running my own life and home, cooking like Delia on speed to prepare for my recuperation, looking after the dog and running my parents’ home and lives is just way too much for me but I can’t see a way out.  And before any of you tell me to get more help for my parents, it’s just not that easy.  Who do I get to put a new pull-out bin in their kitchen cupboard who will a) turn up and b) not charge more in labour than the sodding bin is worth?  Who do I get to do their online grocery shopping?  Who do I get to go to the Doctors or the Hospital with them?  Who do I get to buy their clothes online, then send them back when they don’t fit?  Who do I get to do their meter readings?  Etc. etc. etc.

I still haven’t heard a thing from the hospital.  They first found this ovarian mass in December.  It’s now March.  If this is me being treated as “a priority” I’d hate to see them treating someone who just has a cyst.   I must chase my GP up this week to find out what’s happening.  I shouldn’t have to do that though should I?

I had an unsettling experience at Camera Club last week.  They organize days out as a group and last week it was to the seaside.  I would have loved to go, but it would take an entire week’s worth of energy and ontop of everything else I have to do it’s not achievable.  So I said I wasn’t well enough.  One of the ladies pipes up “It’s only an hour away!  You have a car don’t you and can drive?  What’s the problem?”  It was said in such a challenging way I was taken aback.  Then I started trying to justify why I couldn’t go and realized halfway through I was wasting my breath.   I sat for the rest of the night fuming: at her for her lack of empathy and understanding and at myself for the way I reacted.  I still haven’t found a good way to deal with these situations, so I got pro-active.  I’ve designed some little leaflets explaining my illnesses which I’m going to keep in my bag to hand out in these situations.  It will mean I don’t have to explain and the other person might just learn something.

The Ehlers-Danlos one can be viewed online here: https://mastcellblog.files.wordpress.com/2015/09/eds-brochure-online.pdf  There is a printable version here: https://mastcellblog.files.wordpress.com/2015/09/eds-brochure-print-version.pdf (print on both sides of the paper, then fold into 3).  Both these links are available at the bottom of my Guide to EDS page.

The M.E. one can be viewed here: https://mastcellblog.files.wordpress.com/2015/09/me-brochure-online.pdf  There is a printable version here: https://mastcellblog.files.wordpress.com/2015/09/me-brochure-print-version.pdf  Again both these links are available at the bottom of my Guide to ME page.

I haven’t had time to do the MCAD one yet but will let you know when I have.

It’s Mother’s Day here in the UK.  I’m taking my parents out for lunch and would rather stick pins in my eyes.  My Dad can barely follow a conversation so it’s like talking to a child and my Mum will get drunk and be either overly jolly or overly morose and I will sit there hating her and trying not to let it show.  Being a dutiful daughter is fucking hard work on special days, where I just want everything to be ‘normal’.  It hasn’t helped that I am on day two of a hormone-induced migraine and feel like my head is exploding.

In between all this I have spent the week dreaming about a new house.  There is a small field in my village that I would just love to buy and build a little single story cottage on.  I lie in the bath at nights designing the cottage in my head and imagine mine and Bertie’s life there.  The field isn’t actually up for sale and even if it were I couldn’t afford to buy it let alone build a house on it, but a girl’s gotta have a dream or what’s the point?  And maybe the architect who draws up the plans might be handsome, middle-aged, single and up for marrying a sick girl……I haven’t given up on that dream either 😉



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