Tuesday, 12 November 2013

Tis (almost) the season to be poorly..

As I looked out of the window yesterday morning at the first frost on the cars, it yet again reminded me that the worst of the winter months are yet to come, along with the busiest and most exhausting times at work. The times I'll need all the strength I can get but will have my energy tested to the limit with bugs, germs and aching bones from the cold.

How antimalarials started being used to treat lupus


http://www.lupus.org/blog/entry/why-are-treatments-developed-for-malaria-now-widely-used-for-lupus

Saturday, 9 November 2013

A Poem for my darling daughter Claire


A Poem for my darling daughter Claire

February 23, 2011 at 9:17pm
  
I remember the day you were born, it feels like yesterday
I looked into your beautiful face, you took my breathe away
I promised to protect you and love you your whole life through
Because you are my daughter, it’s what mothers do.

Friday, 8 November 2013

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The Incredible Power of Denial..

For today.... a few words from my husband.


It's early Febuary 2011, early evening. I'm stood in the back yard of the small terraced house me and Claire rented. The same terraced house I had proposed to her in on Christmas day, just over 12 months ago. It's five months until the wedding and Claire isn't there, she's in hospital.

Thursday, 7 November 2013

thursday turd-day

Absolutely exhausted so here's todays post in the format of my boring lupie day ( well hey it's a break from the drivelly moany stuff - I've got lupus, I feel tired, blah blah blah!)



Woke up at 7.38am despite the opportunity to lie in til 8.15 (flexi hr day at work)... somebody in the night clearly ripped me out of bed, threw me downstairs, made me run on a treadmill for an hour and punched me in the mouth. So as per usual woke up feeling like a bloody superstar with a burning cold sore - feel long hot shower is the only solution, did not

Tuesday, 5 November 2013

Don't tell me you're tired

Today I fear I may fail in my attempts to give you anything interesting to read. I'm on day four of five, not a regular occurrence, but it means today I have to dig into the depths of my energy reserves.
Battery levels are officially on low and the world is like that dreary slow voice you heard in your  headphones when your Walkman (for those that are old enough to remember) needed new AA's.
So today is a day of swamp walking (dead legs), fish bowl vision and speech that makes Lindsay Lohan look sober.
The main worry is the concentration, the fear of making a mistake and looking like an idiot. I have to just pray for the best and hope my lovely colleagues don't think i'm a grump.
I wish somebody could walk just one day in my shoes and see how difficult every step I take is and at the same time not wishing this selfish, consuming disease on anyone. I honestly think sometimes that whilst sympathetic, not many people actually understand how hard it is for me to work and function like everyone else. I put twice as much effort into everything I do just to be at the same level and speed, and to avoid massively the perception that I should be given an easier ride because of my illness.
Ultimately I don't have to justify my tiredness, I choose to explain as a reminder to why i'm going at a snails pace that day. So i'm going cut myself some slack, to work in management in a busy shop and stand on my feet 9 hours a day whilst having lupus, is bloody legendary. In the words of the long suffering SuperMark ( my husband).. "Lupus...only proper hard bastards get it."
You can tell he works in advertising..