The delightfully 'outrageous flirt'
Lou has written some truly lovely things about me in
this post.
If I ever needed inspiration - Lou is giving it to me - in bucketloads!
I haven't really written much about this, so thought maybe now is the time.
I will try and cut a very long story short.
In May 1999 I felt like I was coming down with 'something' - not to let this deter me however I hit the clubs with a very dear friend who was visiting, on leave from the RAAF.
The next day I could barely move.
I had a rash.
My arms and legs were beyond heavy.
I managed to see a GP.
He 'had never seen anything like it before' (my rash).
I didn't improve.
I was getting pins and needles in my head/face.
I had black 'spots' in my vision (floaters).
My hands were turning blue.
My hands shook and I started dropping things.
From here I saw doctor after doctor -a neurologist (who told me I had a severe anxiety disorder, and basically to take a valium and get over it), a second neurologist - I flew to another state for this one - to be told I have migraine. I also saw a physician and several skin specialists - all very different diagnoses.
The fatigue lasted many months.
My weight plummeted. I weighed 52kg (114 pounds).
In the end I resigned myself to the fact that I was just mental, lazy, or simply undiagnosable.
As quickly as it arrived - one day I woke up and my arms felt really 'light'.
It was gone.
Approx 6 months later - it was back with a vengeance.
This led to further pointless doctors appointments.
Actually - the only doctor that ever believed this wasn't all 'in my head' was, interestingly, Z17 ADD specialist - a psychiatrist no less. I think he would have a very good idea of what crazy looked like. If it weren't for his support I may have gone over the edge because of the hell those doctors put me through.
Eventually, after many MRI's, blood tests, you name it - I saw a rheumatologist in around 2003.
He gave me a diagnosis of Lupus.
I honestly believe he told me this to shut me up.
After giving me the diagnosis, loosely based on symptoms alone (I have NEVER had a positive blood test for Lupus), I was put on plaquenil first, which didn't work, then steroids.
At the last visit rheumy told me to 'come back when your major organs start shutting down'. Nice.
I decided my GP was the best person to manage my medication.
The steroids worked well, it was amazing to feel 'normal' again.
These were increased from 30mg per day - to up to 75mg per day.
I ended up taking these for over 6 months.
Every day I could feel myself 'puffing up' a little.
In the end I had gained around 15kg (33lbs).
Coming off the steroids was awful - for the first few weeks it was much like being back to square one.
Emotionally - I was spent. Having spent such a long time feeling terrible, with breaks in between of feeling normal, and the scathing comments from these 'specialists' took their toll.
I even lost 'friends' over this.
People that didn't believe me.
People that told me I was 'depressed' (I did try anti-depressants for 12 months, just to prove a point - they didn't make the slightest bit of difference).
I am better off without ALL of them and haven't missed a single one.
I retreated into my shell.
I was always afraid of 'doing too much' for fear of bringing the fatigue back.
Thankfully, touch wood I haven't seen any sign of it's return.
I know the warnings - and heed them!
The pattern is usually a burst of energy which lasts for a few days - I start spring cleaning or something similar - then I fall into a heap.
I may never know what the cause of this was.
But I did find out who my friends were, and learnt how to 'cut people loose' whether they be doctors or 'friends'.
As for the doctors, in the end if I didn't like the way they treated me (the smart arsed comments, the 'oh here we go' or the 'hypochondriac' looks) - I simply refused to pay the bill.
So now, all that's left to finish is the weight I gained.
I think the steroids have mucked up my metabolism.
So as
Lou explained, the process is a slow one.
But I am as determined as I'll ever be to make it happen.
The support I am getting here on my blog is helping me so much.
Thank you
Lou,
G
xx