10 Jun 2013

'If you were a horse they'd have you put down'

Monday 10th June 2013

I had my long awaited appointment at the Lupus unit at St Thomas' Hospital in London today (where I'm treated for my Lupus).  I was really looking forward to it as I was hoping the professor and I would discuss a new medication regime as I've been so unwell lately and thought my medication must not be working.  Well  it turns out it's not the medication that's wrong.  It's my brain.  Yep my brain is officially dodgy.

I was diagnosed today with Fibromyalgia.  I've long suspected I could have this but have never been formally diagnosed until today.  So I can add that to my ever increasing list of shitey illnesses.  If you are not aware, Fibromyalgia is an illness whereby the brain goes a bit weird and sends out pain signals to your fibrous tissues causing widespread (and sometimes severe pain) all over your body.  Other symptoms include extreme tiredness, IBS, memory problems, dizziness, sleep problems and headaches, all of which I have been experiencing for the past 6 months.  I've put a link below for more information....


So there you have it, I now have Systemic Lupus, Sjogrens Syndrome, APS AND Fibromyalgia.  There is no cure and its a life long thing.  Apparently to reduce the pain you have to reduce stress where possible, pace yourself and learn ways to relax, oh and do exercise (when you're not in severe pain) so I need to figure out how to relax as I'm not really sure I know how...

The doctor has prescribed me with an anti-depressant (a low dose) which has been proven to help your brain stop sending out random pain signals.  So I'm hoping this will provide some relief.  In a way I'm glad as at least all the pain etc isn't being caused by really active Lupus as when Lupus is active it can be dangerous and even fatal in that it can start attacking your organs so at least with this fibromyalgia business it doesn't cause any actual damage, it's just a bastard to live with.  So although it's shit to be diagnosed with an additional illness on top of everything else its good to know so that I can manage it, learn to deal with it and hopefully get it under control and kick it's fucking arse into oblivion .

Living with daily pain is hard work, its mentally challenging as well as physically because you got to try and keep your shit together otherwise you will just fall apart and its not nice for those around you to see.  I really hope I don't go down the depression route because its so easy when you live with chronic illness but somehow I've managed to keep my head above water so I just hope and pray I stay that way.

I dread the day I have a lupus flare up and a fibro flare up! Look at me already nicknaming it 'Fibro' it's like we go way back.  I think I need to give it a new name like fuckromyalgia or something.  It doesn't deserve a nice nickname.

As my charming Dad once put it 'If you were a horse darling, they'd have you put down.'  Gotta love him.

My mum came with me to the appointment today which was nice then we went to a couple of shops and she bought me a couple of nice tops and nice new dress so that cheered me up.  I got a new dress to wear on Friday (Sami's uni mate Matt and his fiance Jen are having an engagement party) so I'm looking forward to that.  Its nice having something to celebrate.  The only  thing I'm worried about is when I meet new people and get asked 'So what do you do for a living?'  I mean how am I supposed to reply to that? No one wants to hear well actually I spend most of my time crying in bed with severe pain from Lupus, Sjogrens and Fibromyalgia and my brain doesn't work! LOL! So I said to Sami I need to come up with something really obscure.  I think one suggestion was to say I'm a proctologist (thats an arse doctor to you and me) so if any of you have any better suggestions please let me know! I might say I'm a neurosurgeon. Although I don't think anyone would believe me with my ditzy personality!  So that's something I need to think about.

Right I'm going to go and have a bath and attempt this relaxation business....hopefully with my new tablets I'll be able to get a decent nights sleep and not wake up like a zombie.

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