Christmas Spirit

As we race towards Christmas with the speed and energy of a Meatloaf power ballad i'm confronted by the fact I've survived another year on this planet and moreso in the best (as far as i'm limited) of health and stress free in a long time. 
When you go through a traumatic illness, accident or life changing experience I like to say that it opens your eyes to the truth of what people go through, makes you a far less selfish person but of course I can only speak for myself.
I'm astounded at how easily I notice the shadows of hurt flickering behind peoples eyes. Sad stories playing on loop and transmitting silently to another through tone of voice, eye contact or a subtle smile that doesn't quite break across the cheeks.
Everybody has a sad tale to tell, some more than others. But those who have encountered utter pain need not speak a word, you will be read and understood.
Since my immune system has gone haywire, you'd hazard a guess that with nearly 4 years of regular hospital visits, stays and appointments I would be immune to the routine of going for my  consultations and would treat it with the nonchalance of fern cotton presenting Glasto. But no, far from a party in the mud and more like going back 18 years to the night before your A level results (or BTEC advanced if you were anything like me and found academia like wading through a swamp)
The trouble with me is that I have an overwhelming desire to care far too much about everything. Despite my husbands demands that I should 'not give a shiny what's sometimes i'm afraid it's just built in. So with a looming hospital appointments this week, my overactive imagination steps in and that suppressed but ever present thought of 'what if something isn't ok this time' starts doing it's little dance around my brain.  I ask for those that can see those invisible signs, just to smile and reconsider your actions, don't say those words of contempt, push past me in the busy shops or judge me because I'm a little bit quieter and more tired.  It makes my day that little easier,  you should know. You've been there too.

Everybody needs a hero

Today I'm going to tell you a tall tale about a little known superhero, although the tale isn't tall it is certainly true and worthy of a place on every comic book shop display shelf. It's a triumphant story of true love beating all the odds, tears, happiness and playing guitar down the phone. What is most exciting is that the story is only in it's first few chapters, what is yet to come for our hero and what monsters will he have to defeat to defend his one and only true love?
I am of course lovingly referring to the very handsome curly haired blue eyed boy that is Mark, my wonderful husband and often referred to as SuperMark.

I wish I had a time machine

Dear Claire,

If I start by rewinding back to this time five years ago, we are back in a year that seems so alien rolling off the tongue now we are in the millennial teens of 2013, we are hopping back to 2008 with a pointers inspired by the great unknowable power of hindsight.
You have a lovely little flat of your own, a very nice young man indeed, despite the sarcasm and lack of housekeeping skills (don't worry, plenty of time to sort that out later) and a great job you've had for just over a year.. and isn't that good? It's been an incredible year for you, you've worked very hard and you should be very proud of yourself.
Just eighteen months ago you were working in a shoe shop run by a gambler and living in a cold damp house with a promiscuous irishman, his gay brother and a hippy loner from new zealand.
In ten days time you move in with the love of your life and as fate would have it just to make it that touch more romantic, just in time for Christmas. Don't get too excited, there isn't a diamond ring in your Christmas cracker this year (it's a pink nintendo DS) but just hold your horses, all good things come to those who wait.  This one's a keeper, he just likes to bide his time (with everything) very annoying and frustrating right now but it's something that you will love very much.
 One thing you will have noticed by now is the joint pain, the endless pounding in your fingers and inability to straighten your left arm without a shock of white pain down it. Yeah, that's not normal and it's not just arthritis, you should go the doctors for them to keep an eye on it, there's probably not much they can do right now and be prepared for them to not believe you that much, as blood tests at this stage will not really show that much to build a case, but at least if you are repetitive in your visits you might get an answer sooner than I did.
My advice for the next few months is to gain a bit of perspective with work and ask those above to help, you've just done 12 days in a row without a day off correct? that is not acceptable and you have absolutely no idea the strain you will put on your body as you continue to do this for another year. Stop.  Now.  You will find the act of separating the two an arduous task, as you always want to do the best for everyone, including the people who pay your wages, but you're forgetting one vitally important thing. You have completely forsaken yourself.   Be selfish, rota days off and book holiday time, negotiate for staff, delegate tasks and stop doing everything yourself.  It is a shop, the staff will cope and the business will continue to run.. and we'll leave that part just there.

The language barrier.

Lupus suffers are often the masters of disguise, in our own little world what we say or do is not exactly what we mean.. and perhaps sometimes neither do others in our lives..

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

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.