Sandie's story was first published on the Brain & Spine Foundation website in 2011.
All about me
I live in Norfolk with Arf, my Hubby and my little girlie cat called Lucy.
Around 1995 – when we were on holiday in Yorkshire actually – I began to have spells of abject tiredness; balance problems and numbness in my legs.
My shoes would not keep hold of my feet! Embarrassing and upsetting because I appeared drunk and disorderly! The heat from having a bath affected me too; I thought it was the menopause looming so went to my GP and he agreed that it was indeed my entry into "my twilight years", together with panic attacks caused by anxiety. Oh my goodness - how I would come to resent that word!
(Many years ago I had a very painful divorce and suffered extreme anxiety; I was put on Valium and for 30 years subjected my body to daily cocktails of these pills. Luckily I managed to wean myself off these drugs in 2007 and have been free from them ever since.)
As the symptoms were sporadic and short-lived, I didn’t put that much importance on them. I managed to continue to work part-time in Retail and thought this was just the way it was.
Something going on in the back of my head
However! Around Christmas 1997, I was actually using a walking stick for balance. Don’t ask me why I suffered this because I honestly don't know – I think it was the continued diagnosis of anxiety and being told to "go away and enjoy myself"!
I trundled once again to my GP, where I couldn't even stand with my eyes shut without falling over. He was appalled that I had left it so long!
So I was referred to hospital to see a neurologist and after giving my medical history and going through some balance tests, he said ( and I remember this like yesterday), "I think you have something going on in the back of your head”. This was when thoughts of MS were mentioned.
Then followed a barrage of tests including a lumbar puncture, evoked potential and finally an MRI scan on my brain.
A tumour the size of a satsuma
I had a tumour the size of a satsuma sitting on the meninges at the back of my brain – scared didn’t even come near the feelings I had! In fact, I think I went into "this isn’t really happening to me" mode as I asked the Neurologist if I would have to go into hospital!
The hospital became my second home. My first sight of people with staples in their heads filled me with horror - would this be me?
After having an angiogram where they did a “map” of the arteries in my brain, they sat me and my husband Arf down and explained the risk of my bleeding on the operation table, as a large artery was feeding the tumour.
Now here comes the Sci-fi bit – they actually "super-glued" across this artery by going up into my brain via my groin – whilst I was awake! (This is known as embolisation).
I wasn’t overly frightened because I was on a massive dose of steroids to try and shrink the tumour and anyone who has been given steroids will know they make you feel almost invincible and always starving! My one thought was, though, "what happens when the glue wears off?" Obviously I was still in the land of "not me"!
They actually "purloined" a chap from Oxford to come and do this for me – how amazing was that? And...
It worked – the tumour began to shrink.
The actual operation took place on July 8th 1998 after weeks of waiting for an Intensive Care bed for when I came round from the Op. In fact, it all went sooooo well! After over 6 hours on the operation table, the tumour was out and it was BENIGN!
Recovering from the op
I didn’t need the bed and just stayed one night in "High Dependency". After a week in hospital, I was allowed home. And then the real hard work began.
My brain obviously swelled and I couldn’t see for a week or so; this was followed by months of learning to walk properly again and also dealing with short-term memory problems; small steps which took approximately 2 years. I was elated at how well and confident I was!
Diagnosed with MS
Then I began to have balance problems once again and had an MRI scan which proved negative so – wait for this – once again, anxiety was mentioned! But I was adamant something was wrong and after almost a year an MRI scan showed I had MS.
It was a cruel blow to my brain and also my soul! I became depressed because I couldn’t fight this; there was no cure; this was progressive. I thought my life was over and looked forward to days sitting in a wheelchair covered with a blanket. Then a wonderful Neuro Nurse called Wendy persuaded me to fight once again. "Use it or lose it," she said.
The challenge was back on!
It’s now been over 10 years since my diagnosis and although I am now 60+, I manage the MS well. I have a Personal Budget for Care and also for Health – I am on a small pilot scheme here in Norfolk called Personalisation, an initiative aiming for social care service users to have control over how money allocated to their care is spent.
Personalisation – the buzz word of the moment – has changed how I see myself. I chose my 2 Personal Assistants as well as how I spend the rest of my Care and Health budgets and I’ve taken part in 3 DVDs promoting Personalisation. You can find out more about Personalised Care here.
My husband Arf has been simply wonderful - everyone should have an Arf; he walks beside me, not behind nor in front but beside me. He allows me to be the best I can be.
My brain is toe-scrunchingly amazing! I respect it and nurture it. It is adaptable and can be self-healing; I am Sandie. I am unique!